Today I'd like to start off by wishing my mom a Happy Birthday! I couln't ask for a more caring mother. She works so hard to look after everyone and I am so proud of her for what she has accomplished over the last year with her new healthy lifestyle and amazing success with her weight loss. I ha e truly never been so proud. Love you mom!
Yesterday was two months since coming in to the hospital and over a month since being activated on the transplant list. I am in the home stretch now hoping to be going home at the end of May or beginning of June. I am going to be done my 6 week physio program on May 31 and am getting things lined up to be able to go home. I will be going home with a feeding tube to help gain more weight and maintain what I have gained. I am waiting on approval for a BiPAP machine so my lungs can have a break at night and help me conserve the calories and energy I need to stay strong. I will have my PICC line in in case I end up needing anymore antibiotics as a regular IV won't last more then a couple of days bc of all the scar tissue from years of being poked and prodded. And I will be going home on oxygen 24/7. My need for oxygen has gone from 2 1/2 to 3 liters when I came in to 5 liters when at rest and 6-8 when walking. My oxygen company came here today to help set up a new portable machine so I can still go out and about and not have to worry about running out. The same machine I had before but this one would be able to give me more oxygen. The portable machines are nice bc they can be plugged into a vehicle, run off a battery or plug into the wall. Now here is the frustrating part. The portable machine only goes up to 5 liters and that is not continues flow that is with a pulse flow were you get a puff of air each time you take a breath. My body does not hold up my oxygen levels right now with the pulse setting and would need to be on continuous flow so therefore I am extremely frustrated as I will have to use cylinders to keep up with the oxygen I am now needing. I will have to get use to them but on six litres of oxygen they only last about an 1 hour to 1 1/2 hours and they have to be refilled by the oxygen provider so If I want to go anywhere I have to try and pack enough bottles to get me to and from my destination. I was planning on hanging out at the lake a lot this summer but my eight hour golf game is going to have to be cut down to an hour or two. The oxygen company can deliver full cylinders once a week but just to the town a d not directly to the lake. I hate this I feel like Im already starting to loose my independence and I haven't even left the hospital yet. My concentrator still works at home or plugged in but it is not portable. Also it will not be easy to drag the cylinders if I want to do simple stuff like go to the grocery store or visit anyone. I am so tired as it is having to drag them around is gonna be frustrating. But I'm go. A do what I have to do to stay healthy till a new heart/lungs arrive. I am also thinking I am going to have to hire someone to help me with just doing simple things that people take for granted. I am frustrated bc I enjoy being able to take care of myself and I e joy my independence. I am also frustrated bc my blood pressure is still really high and may have to stay or go on more blood pressure meds. I don't know if the high blood pressure plays a part I. My anxiety and stress lately or if Im just doing to much thinking lately.
Today was the first time I actually realized how sick I actually am and need a transplant sooner then later. I appear to look healthier then I have for a long time but these darn lungs are not keeping up very well. Maybe I just need to get home and get cuddles from my Kitty and puppy Ryder. My pets always make me happy!
Oh and I met with the Transplant Phychologist today got to talk to her about everything and anything it was nice never talked to a psychologist before but she had some good advice especially when it comes to thinking about myself and my health instead of taking other people's situations to heart. I have a heart for everything and everyone and I take it on even if it's just stuff I see on tv like the tornado in Oklahoma or family matter with a sister! I tend to worry more about them then myself but it truly is because I care so much. I have been trying to learn to not take everything in and send out good vibes and then just tell myself to not stress over it or to bring it to God in prayer!
On a more uplifting note I was visiting with one of the girls in my transplant group and her sister and when wee were walking back to our rooms a nice older guys stopped in the hallway like he knew one of us and said to us "oh wow look three angels" he made each of our night and we really appreciated the kind words. Made our night for sure. You have now idea how much words like that or just a smile can help make your day!
Thanks for reading tonight I do t usually get frustrated and try and feel strong but just needed a little vent session to get some stuff off my mind. Oh and don't forget everyone be kind to one another.
Wednesday 22 May 2013
Tuesday 21 May 2013
Random Ramblings! May 21, 2013
I want to start off by thanking everyone who has been supporting me while I go thru this next chapter of my life! Thank you to those of you who are reading this blog and sending me kind messages. I am a fighter, I am strong and I am not willing to let CF win. Thank you to those who have said I am an inspiration to them if I can help out just one person realize that in life there is only one guarantee and that is that we are all going to die but no one knows when that day will be so never take a moment for granted and take time to spend with the people who are most important to you. Slow down and realize what the true blessings in life are. And those blessings are up to you to decide! Anyways!
I wanted to tell you about a girl named Lorna whom I met over a month ago while hanging in the hospital here. All the years being in and out of hospital I have only met a few people with CF but have never really had the chance to really talk to someone about growing up with CF and living with CF. People with CF are not encouraged to hang out bc we can pass bugs to each other which is dangerous for our lungs. But now that I don't have CF lungs it is safe for us to visit and hang out. We are still cautious and don't go super close just In case but having someone here to talk about my disease and what I've gone thru my whole life is nice. We have talked about all growing up with CF and how both our pants treated us like we were normal kids and never held us back bc of our CF. We discussed how as a teenager with CF all we wanted to do was be normal like our friends. Go out, date, not have to do physio, do daily breathing treatments. We talked about different treatments we went thru and compared. Lorna is 39 and has been waiting for the past ten years for a lung transplant. She was farely healthy growing up and would have the odd hospital visit for a tune-up. She even has a 14 year old daughter. She said when she was pregnant with her she felt her healthiest. But CF started to take It's toll. Lorna has been in the hospital since December and is still waiting for a transplant so she can start to live a normal life. If that is even in the vocabulary of someone growing up with a terminal disease. I can say that my last twelve years may not be your normal but it has defiantly been my normal. For people living with CF the hospital becomes your second home and the nurses are more then just a caregiver they become friends. Lorna is now going to have the same transplant that gave me my life back on June 7,2013. After all the years of waiting she finally will be able to breath. Her mom and sister are donating one of their lobes to her. She is super excited to be able to leave the hospital and live a "normal life" I can see after being here as long as she has I'd be super excited to move on with my life. Lorna has also taught me a few things about being in the hospital like you are aloud to sleep in if you haven't gotten a good night sleep. When we first met she told me she didn't get up till 10 every morning and I asked how do you do that cause I'm woken up at 7:30 to get my vital signs taken. And she says I just tell them to go away and come back later. She even has on her white bored "please let Lorna sleep" I know there have been a few nurses probably get scared by the morning ray of sunshine I'm sure Lorna is when being woken up after spending the night trying to get to get to sleep from having to deal with couphing all night. I sure don't miss that. She is also a typical CF patient pretty much taking control of her own medical care. We tend to like to run our own IVs, hook up our own tube feeds, do our own meds, and some set our own schedules. Lorna also makes and changes her own bed, has her own fridge, kurig machine, and her room decorated with pictures from family and friends. And in till I met her I had no idea family or friends can actually stay in the room overnight with you even if you share a room. Her fiancé even snuggles with her in the little hospital beds. They stay up late and sleep in during the day. To bad I didn't meet her earlier I may have know more but have always been a very compliant patient and am kinda like to follow the rules. She's trying to change me into a "rule breaker" lol I believe she even told my nurse to let me sleep in one day bc I was complaining about being so tired so she asked me who my nurse was and the next day it was a Sunday I got to sleep till 9:30. Lorna is in awesome shape and tries really hard at the gym to build muscle and get strong. We compared our weights we were doing for leg press and I was excited bc I went from 40 lbs to 65 lbs and Lorna is shorter then me and weighed about what I weighed when she was admitted but now she is a healthy 112 lbs which she looks really good. Anyways her weight on the leg press is 200lbs so I got a bit of ways to go. Also I never knew there was a pool here till she told me she goes in the pool every Thursday and does extra exercises. Lorna is a super girl and reminds me of how sick I was when I had my transplant 12 years ago. She has the typical CF cough were everyone takes a double look when your out of the hospital and wonders why you aren't I. The hospital and while in the hospital people think you have smokers cough or really bad pneumonia but not people it's just CF and it's what CF ers deal with when they grow up. I am 34 and Lorna 39 and in CF years we are pretty much considered seniors. Without advances in lung transplant neither her nor I would have or had the option of the living lobar lung transplant that has given me over twelve years and will allow Lorna to live her life. As of today's date May 21, 2013 her countdown to a new life with her fiancé, daughter and family has began. 17 days!!!! Please Pray for Lorna and her family and that they can have the same joyment my family and I received after having a successful transplant.
Today was another weigh in 39.4(87 lbs)Happy Dance I am almost close to my goal of 40kg I wanted to gain before going home to continue to gain weight. I am glad that I have made such great steps in gaining back my weight and getting stronger. Looks like I'm starting to see the end of the tunnel and back to life at home and start my life for a chance at beginning to live again!
I wanted to tell you about a girl named Lorna whom I met over a month ago while hanging in the hospital here. All the years being in and out of hospital I have only met a few people with CF but have never really had the chance to really talk to someone about growing up with CF and living with CF. People with CF are not encouraged to hang out bc we can pass bugs to each other which is dangerous for our lungs. But now that I don't have CF lungs it is safe for us to visit and hang out. We are still cautious and don't go super close just In case but having someone here to talk about my disease and what I've gone thru my whole life is nice. We have talked about all growing up with CF and how both our pants treated us like we were normal kids and never held us back bc of our CF. We discussed how as a teenager with CF all we wanted to do was be normal like our friends. Go out, date, not have to do physio, do daily breathing treatments. We talked about different treatments we went thru and compared. Lorna is 39 and has been waiting for the past ten years for a lung transplant. She was farely healthy growing up and would have the odd hospital visit for a tune-up. She even has a 14 year old daughter. She said when she was pregnant with her she felt her healthiest. But CF started to take It's toll. Lorna has been in the hospital since December and is still waiting for a transplant so she can start to live a normal life. If that is even in the vocabulary of someone growing up with a terminal disease. I can say that my last twelve years may not be your normal but it has defiantly been my normal. For people living with CF the hospital becomes your second home and the nurses are more then just a caregiver they become friends. Lorna is now going to have the same transplant that gave me my life back on June 7,2013. After all the years of waiting she finally will be able to breath. Her mom and sister are donating one of their lobes to her. She is super excited to be able to leave the hospital and live a "normal life" I can see after being here as long as she has I'd be super excited to move on with my life. Lorna has also taught me a few things about being in the hospital like you are aloud to sleep in if you haven't gotten a good night sleep. When we first met she told me she didn't get up till 10 every morning and I asked how do you do that cause I'm woken up at 7:30 to get my vital signs taken. And she says I just tell them to go away and come back later. She even has on her white bored "please let Lorna sleep" I know there have been a few nurses probably get scared by the morning ray of sunshine I'm sure Lorna is when being woken up after spending the night trying to get to get to sleep from having to deal with couphing all night. I sure don't miss that. She is also a typical CF patient pretty much taking control of her own medical care. We tend to like to run our own IVs, hook up our own tube feeds, do our own meds, and some set our own schedules. Lorna also makes and changes her own bed, has her own fridge, kurig machine, and her room decorated with pictures from family and friends. And in till I met her I had no idea family or friends can actually stay in the room overnight with you even if you share a room. Her fiancé even snuggles with her in the little hospital beds. They stay up late and sleep in during the day. To bad I didn't meet her earlier I may have know more but have always been a very compliant patient and am kinda like to follow the rules. She's trying to change me into a "rule breaker" lol I believe she even told my nurse to let me sleep in one day bc I was complaining about being so tired so she asked me who my nurse was and the next day it was a Sunday I got to sleep till 9:30. Lorna is in awesome shape and tries really hard at the gym to build muscle and get strong. We compared our weights we were doing for leg press and I was excited bc I went from 40 lbs to 65 lbs and Lorna is shorter then me and weighed about what I weighed when she was admitted but now she is a healthy 112 lbs which she looks really good. Anyways her weight on the leg press is 200lbs so I got a bit of ways to go. Also I never knew there was a pool here till she told me she goes in the pool every Thursday and does extra exercises. Lorna is a super girl and reminds me of how sick I was when I had my transplant 12 years ago. She has the typical CF cough were everyone takes a double look when your out of the hospital and wonders why you aren't I. The hospital and while in the hospital people think you have smokers cough or really bad pneumonia but not people it's just CF and it's what CF ers deal with when they grow up. I am 34 and Lorna 39 and in CF years we are pretty much considered seniors. Without advances in lung transplant neither her nor I would have or had the option of the living lobar lung transplant that has given me over twelve years and will allow Lorna to live her life. As of today's date May 21, 2013 her countdown to a new life with her fiancé, daughter and family has began. 17 days!!!! Please Pray for Lorna and her family and that they can have the same joyment my family and I received after having a successful transplant.
Today was another weigh in 39.4(87 lbs)Happy Dance I am almost close to my goal of 40kg I wanted to gain before going home to continue to gain weight. I am glad that I have made such great steps in gaining back my weight and getting stronger. Looks like I'm starting to see the end of the tunnel and back to life at home and start my life for a chance at beginning to live again!
Tuesday 14 May 2013
Hospital Life- May 6-12, 2013
It's been another busy week for me and I am totally exhausted. Going to physio and working out in the gym to get stronger really tires me out but I know I have to keep it up to get stronger before my transplant. I am really starting to see signs of improvement and even notice I am actually starting to build some muscle and am able to walk faster and at a higher grade on the treadmill. Even though I am completely exhausted I know it is important to push myself so I have a fighting chance of a better out come after transplant.
There have been a lot of advancements in transplant since I had my living donor lung transplant over 12 years ago now. There is a new machie that is the only portable lung machine in Canada right hear at the U of A Hospital. Toronto has one but it's not portable I don't have the name of the machine right now but will get it. The machine is used when retrieving organs from an organ donor. It is used to keep lungs alive while they are being transported to the recipient. The doctors are able to treat the lungs as if they are alive and treat them with antibiotics and cleaning them before they are transplanted. This gives the lungs a longer life span outside the human body and allows for the lungs to come from further away and other provinces. Giving the lungs a better chance of being good for transplant.
I got weighed on Tuesday and haven't gained anything so now I am getting tube feeds at night that are 2000 calories at night and I eat about 1500 calories or more a day. So I'm hoping the new 3500 calorie diet will help me continue with weight gain. I'm up about 7 pounds since coming in.
I've been going on a few passes now that the weather is nicer out I can enjoy going out for a few hours to visit with family and friends and eat non hospital food. I went on a pass the other day to my sister-in-laws house and had Viatnamese food and hung out on the deck and visited. The weather was so beautiful. Also went out for the afternoon on Sunday Mothers Day with my friend Janice. We went to the Sugar Bowl it is a Resteraunt that is located in the university district and has been featured on "you got to eat here" Canadian version of diners,drive-ins and dives. They are famous for there freshly made cinnamon buns and homemade chicken &waffles with maple butter syrup. It was 29 degrees out a very hot day so there patio was supper busy and the Resteraunt wad as well. It reminded me of eating at a Resteraunt in Mexico because it was so open and airy. They didn't have any cinnamon buns available bc they had sold out and I didn't try the chicken and waffles bc the special sounded really good and it was. It was a brunch type menu on Sundays and the special was brussel sproats, grilled tomatoes, eggs, sausage and a bunch of other healthystuff! Then it was so hot out we went to lulu lemon to find some capris. Umm I gotna few nice pieces and went up a size in my shirts I no longer wear the smallest size there. Woop Woop. Sunday was also the end of nurses appreciation week so I ordered Crave Cupcakes for the nurses from Edmonton crave but got a call in the morning that there oven had broke down. So i had them specially delivered from Calgary they are so delicious and so worth it. Also got a beautiful diamond Thomas Sabo charm from Janice to go with my other beautiful charms. Also for Mothers Day got a beautiful bunch of vase of flowers from my "son" Ryder. Or for those of you who dont lknoew he is our dog and like my son. He is very spoiled and well behaved but sometimes I think he believes he's human as he would never be caught sleeping outside, or without his huge dog bed. He often sneaks into bed of our families when they let him have sleep overs. I am really missing him especially when I see the compassion hospital dogs that
Are brought around the hospital for patients. And I really miss my cat "Kitty" she is a Siamese and really likes me so I think she is stressed out thinking she is stuck with having to be the only female feline in the house right now.
On May 20 it will be two months in the hospital I have come a longnway from when I first came in. When I came in I could barely walk to the bathroom and back without being out of breath. I still get shortness of breath but not as bad as it was. I went for pulmonary function tests the other week and it showed a slight improvement. Only about 1% but they didn't go down so that was posative. My lungs will never recover until I have the transplant but doing exercise has helped with some improvement. I have two weeks left of the physio program and then I can possibly see a light at the end of the tunnel to going home. I will be going home with the feeding tube,ByPAP machine, PICC line and oxygen but it is to all help me with the ultimate goal of staying healthy enough for transplant. I have to get everything set up bf I am able to go home the home tue feeding program, the BIPAP approval, PICC line flushes and because I now required 5 to 8 liters of oxygen they have to figure out different setup that I had when at home. I have gone from needing 2 liters to 5 liters at rest and 3 to 6-8 liters while walking or doing activity.
I can't remember if I explained this before yet but if I have sorry just wanted to re send. In regards to me receiving a transplant weather it be heart/lung transplant or lungs where they fix my mitro valve I only qualify for organs from a donor who is declared "brain dead" and cannot get another living donor transplant. Though I have had over 12 years success with my living donor transplant it is a once in a life time opportunity and there are risks involved with the living donors. When I had the transplant I only had about 6 months till my lungs would have failed so at the time it was the only option. Also I believe that they do not do living donor twice bc it is a riskier surgery the second time around. Since being given the news that I need another transplant I have been thinking how unprepared I was the last time I had a transplant. I never thought about doing up a personal directory, a will, thinking about what I would want if It ever came to the point were I got to sick to make my own decisions, how is my husband going to know all the passwords for the banking will he even be able to pay the bills. I think it is smart for everyone to talk to there family about end of life decisions and what not because you never know when your time will be. I was thinking if I don't even know what I'd want at the end of my life how will my family know. There are so many questions when it comes to filing out a personal directive and you almost have to have a many education on what options that are available. The hospital usually gives anyone a personal directive to fill out before any major surgery or to anyone who is terminally I'll or older. Something for everyone to think about doing. And even talking to family about funeral plans is a good idea as well I don't have a clue what myself or people in my family would want. I'm not thinking of all this stuff bc I think I'm not going to make it to a transplant but simply bc it's important stuff to think about. Stuff like this is especially important if you have children.
Ok folks that is all for tonight I had to take a sleeping pill tonight to help me sleep and it's kicking in. So will update more tomorrow. I have to remember to tell you about my friend Lorna whom Ive come to know while being in the hospital she is waiting for a lung transplant as well will write more about her tomorrow. Her story is pretty amazing as well!
There have been a lot of advancements in transplant since I had my living donor lung transplant over 12 years ago now. There is a new machie that is the only portable lung machine in Canada right hear at the U of A Hospital. Toronto has one but it's not portable I don't have the name of the machine right now but will get it. The machine is used when retrieving organs from an organ donor. It is used to keep lungs alive while they are being transported to the recipient. The doctors are able to treat the lungs as if they are alive and treat them with antibiotics and cleaning them before they are transplanted. This gives the lungs a longer life span outside the human body and allows for the lungs to come from further away and other provinces. Giving the lungs a better chance of being good for transplant.
I got weighed on Tuesday and haven't gained anything so now I am getting tube feeds at night that are 2000 calories at night and I eat about 1500 calories or more a day. So I'm hoping the new 3500 calorie diet will help me continue with weight gain. I'm up about 7 pounds since coming in.
I've been going on a few passes now that the weather is nicer out I can enjoy going out for a few hours to visit with family and friends and eat non hospital food. I went on a pass the other day to my sister-in-laws house and had Viatnamese food and hung out on the deck and visited. The weather was so beautiful. Also went out for the afternoon on Sunday Mothers Day with my friend Janice. We went to the Sugar Bowl it is a Resteraunt that is located in the university district and has been featured on "you got to eat here" Canadian version of diners,drive-ins and dives. They are famous for there freshly made cinnamon buns and homemade chicken &waffles with maple butter syrup. It was 29 degrees out a very hot day so there patio was supper busy and the Resteraunt wad as well. It reminded me of eating at a Resteraunt in Mexico because it was so open and airy. They didn't have any cinnamon buns available bc they had sold out and I didn't try the chicken and waffles bc the special sounded really good and it was. It was a brunch type menu on Sundays and the special was brussel sproats, grilled tomatoes, eggs, sausage and a bunch of other healthystuff! Then it was so hot out we went to lulu lemon to find some capris. Umm I gotna few nice pieces and went up a size in my shirts I no longer wear the smallest size there. Woop Woop. Sunday was also the end of nurses appreciation week so I ordered Crave Cupcakes for the nurses from Edmonton crave but got a call in the morning that there oven had broke down. So i had them specially delivered from Calgary they are so delicious and so worth it. Also got a beautiful diamond Thomas Sabo charm from Janice to go with my other beautiful charms. Also for Mothers Day got a beautiful bunch of vase of flowers from my "son" Ryder. Or for those of you who dont lknoew he is our dog and like my son. He is very spoiled and well behaved but sometimes I think he believes he's human as he would never be caught sleeping outside, or without his huge dog bed. He often sneaks into bed of our families when they let him have sleep overs. I am really missing him especially when I see the compassion hospital dogs that
Are brought around the hospital for patients. And I really miss my cat "Kitty" she is a Siamese and really likes me so I think she is stressed out thinking she is stuck with having to be the only female feline in the house right now.
On May 20 it will be two months in the hospital I have come a longnway from when I first came in. When I came in I could barely walk to the bathroom and back without being out of breath. I still get shortness of breath but not as bad as it was. I went for pulmonary function tests the other week and it showed a slight improvement. Only about 1% but they didn't go down so that was posative. My lungs will never recover until I have the transplant but doing exercise has helped with some improvement. I have two weeks left of the physio program and then I can possibly see a light at the end of the tunnel to going home. I will be going home with the feeding tube,ByPAP machine, PICC line and oxygen but it is to all help me with the ultimate goal of staying healthy enough for transplant. I have to get everything set up bf I am able to go home the home tue feeding program, the BIPAP approval, PICC line flushes and because I now required 5 to 8 liters of oxygen they have to figure out different setup that I had when at home. I have gone from needing 2 liters to 5 liters at rest and 3 to 6-8 liters while walking or doing activity.
I can't remember if I explained this before yet but if I have sorry just wanted to re send. In regards to me receiving a transplant weather it be heart/lung transplant or lungs where they fix my mitro valve I only qualify for organs from a donor who is declared "brain dead" and cannot get another living donor transplant. Though I have had over 12 years success with my living donor transplant it is a once in a life time opportunity and there are risks involved with the living donors. When I had the transplant I only had about 6 months till my lungs would have failed so at the time it was the only option. Also I believe that they do not do living donor twice bc it is a riskier surgery the second time around. Since being given the news that I need another transplant I have been thinking how unprepared I was the last time I had a transplant. I never thought about doing up a personal directory, a will, thinking about what I would want if It ever came to the point were I got to sick to make my own decisions, how is my husband going to know all the passwords for the banking will he even be able to pay the bills. I think it is smart for everyone to talk to there family about end of life decisions and what not because you never know when your time will be. I was thinking if I don't even know what I'd want at the end of my life how will my family know. There are so many questions when it comes to filing out a personal directive and you almost have to have a many education on what options that are available. The hospital usually gives anyone a personal directive to fill out before any major surgery or to anyone who is terminally I'll or older. Something for everyone to think about doing. And even talking to family about funeral plans is a good idea as well I don't have a clue what myself or people in my family would want. I'm not thinking of all this stuff bc I think I'm not going to make it to a transplant but simply bc it's important stuff to think about. Stuff like this is especially important if you have children.
Ok folks that is all for tonight I had to take a sleeping pill tonight to help me sleep and it's kicking in. So will update more tomorrow. I have to remember to tell you about my friend Lorna whom Ive come to know while being in the hospital she is waiting for a lung transplant as well will write more about her tomorrow. Her story is pretty amazing as well!
Monday 6 May 2013
Yeah it's Thursday! May 2, 2013
Today I am still feeling completely worn out and exhausted but I managed to drag my but out of bed and to physio. I get picked up by a porter everyday except weekends at 10:30. Once I get to the gym they take my vitals and I start my work out 20 minutes on the treadmill at a 1.4 speed. Slowly getting my speed up as I do my daily routine. I am now up to doing a few more exercises which include
Started. Now at
Vertical bench 10 lbs. 20 lbs
Vertical row. 20 lbs. 25 lbs
Leg press. 45 lbs. 60 lbs
Leg curls. 20 lbs. 20 lbs
Lat pulls. 5 lbs
Triceps. 5 lbs
Step ups. 10 each leg
Heel raises. 20
The weights are not much but I have to post them so I can reference back when I'm near the end of my program and lifting WAY more!!
While on the treadmill I after 11 minutes I felt like I was going to pass out not sure what was happening I was really light headed and had to sit down for ten minutes to rest. I started having to bring a snack to the gym bc my blood sugars are always low after I work out. I had just started working out and checked my sugars before I got there so I don't think I was feeling light headed bc of my sugars but who knows.
The rest of the day was pretty uneventful tried to get some rest but couldn't so I'll super exhausted tonight.
Started. Now at
Vertical bench 10 lbs. 20 lbs
Vertical row. 20 lbs. 25 lbs
Leg press. 45 lbs. 60 lbs
Leg curls. 20 lbs. 20 lbs
Lat pulls. 5 lbs
Triceps. 5 lbs
Step ups. 10 each leg
Heel raises. 20
The weights are not much but I have to post them so I can reference back when I'm near the end of my program and lifting WAY more!!
While on the treadmill I after 11 minutes I felt like I was going to pass out not sure what was happening I was really light headed and had to sit down for ten minutes to rest. I started having to bring a snack to the gym bc my blood sugars are always low after I work out. I had just started working out and checked my sugars before I got there so I don't think I was feeling light headed bc of my sugars but who knows.
The rest of the day was pretty uneventful tried to get some rest but couldn't so I'll super exhausted tonight.
ICU Tour May 1, 2013
Today I went to the gym early at 9:15 so I could join In on the ICU tour that was happening at 11.
When I had my transplant 12 years ago I was in the ICU that was located on there third floor of the hospital in the middle so there were only windows on one side. The ICU I was in had about 7 beds in a large room that were seperated by hospital curtains. It also had two private rooms that had their own tvs. I was in the main open area when I first woke up then was moved to a private room about three days later so I could watch tv while I was awake. The new ICU where you go if you have any surgery involving the chest or cardio vascular system is located in the new heart institute. We were able to go into the ICU and see someone who had just come out of having surgery and was just waking up. The new ICU now has all private rooms that are spacious and bright. The rooms had huge windows and the one we saw had a nice view. There looks like there is less equipment in the room. Equipment has become more technology advanced and made smaller. The equipment that I would most likely be hooked up to will be a ventilator, IV, chest tubes (pleurovacs),epidural, a central line in my main artery in my neck, and an IV line possibly in my wrist for taking blood pressure and blood and a catheter so I don't have to go pee while hooked up to all the equipment. I had to get up a few times last time I was in the ICU and having to drag all the equipment sucks. Usually after a lung transplant they try and get you up and moving right away even walking as soon as they can so fluid doesn't get on the lungs and turn into pneumonia. The average stay in the ICU is 3-5 days and then I would go to a recovery unit for a bit before going to my current unit to complete recovery.
After the tour we met so we could talk about and get answers to any questions we had for the recipient transplant coordinator. She went over the process that happens when you get a call that organs are available.
1. Is the official phone call were a transplant coordinator will call and let us know that there are lungs available and let us know how much time we have to get to the hospital. It depends on were you live were you will be picked up. In Alberta recipients can only get the helicopter in the province of Alberta so I would have to go to the nearest Alberta airport and the helicopter would arrange to pick me up. In the other provinces such as Saskatchewan the recipient has to make arrangements before the six week program is finished with there province to register and get picked up only in sk. I cannot be any further then 2 hours away from Alberta and if I am I have to let the transplant coordinator know and then they would put me on hold on the transplant list. So guess I'm stuck in Alberta for the next while till I get a call. Also there are rules when traveling in the air ambulance like how much weight can be brought onto the plane and only one person can come with me as the support person. I don't know much about that part yet because I haven't met with the coordinator yet to talk about all of that. I will be meeting with her before I leave.
2. Exceptional release- this is were the transplant coordinator let's me know depending on the condition of the lungs and the timing weather or not they have been able to test for different diseases and what not. For example they don't have enough time usually to test the donor for stds, some infections and stuff like that. Basically it is them letting us know that there are possibilities of certain things wrong with the lungs and I am aware of them and agree to the transplant still. They want to get the organs in the sooner the better because the least amount if time outside the body the better. They can treat with medications and such after the transplant if any thing were to show up or they haven't received results on.
3. While I am getting flown to the hospital there is a special team that flys to retrieve the donor organs. This is when they get more information and get to see the organs to make a decision weather or not that they will be a suitable match or if there is something wrong with them and they are not able to use them. This is called a dry run if something happens to the organs and they are not able to be used. Depending on were the organs are usually the recipient me will be at the hospital before the organs. Getting test and ready for the transplant. If the organs are going to be awhile to get then it may be even possible to drive because I only live two and a half hours away from the hospital. This would be better to me as I Love to Fly! NOT
When I had my transplant 12 years ago I was in the ICU that was located on there third floor of the hospital in the middle so there were only windows on one side. The ICU I was in had about 7 beds in a large room that were seperated by hospital curtains. It also had two private rooms that had their own tvs. I was in the main open area when I first woke up then was moved to a private room about three days later so I could watch tv while I was awake. The new ICU where you go if you have any surgery involving the chest or cardio vascular system is located in the new heart institute. We were able to go into the ICU and see someone who had just come out of having surgery and was just waking up. The new ICU now has all private rooms that are spacious and bright. The rooms had huge windows and the one we saw had a nice view. There looks like there is less equipment in the room. Equipment has become more technology advanced and made smaller. The equipment that I would most likely be hooked up to will be a ventilator, IV, chest tubes (pleurovacs),epidural, a central line in my main artery in my neck, and an IV line possibly in my wrist for taking blood pressure and blood and a catheter so I don't have to go pee while hooked up to all the equipment. I had to get up a few times last time I was in the ICU and having to drag all the equipment sucks. Usually after a lung transplant they try and get you up and moving right away even walking as soon as they can so fluid doesn't get on the lungs and turn into pneumonia. The average stay in the ICU is 3-5 days and then I would go to a recovery unit for a bit before going to my current unit to complete recovery.
After the tour we met so we could talk about and get answers to any questions we had for the recipient transplant coordinator. She went over the process that happens when you get a call that organs are available.
1. Is the official phone call were a transplant coordinator will call and let us know that there are lungs available and let us know how much time we have to get to the hospital. It depends on were you live were you will be picked up. In Alberta recipients can only get the helicopter in the province of Alberta so I would have to go to the nearest Alberta airport and the helicopter would arrange to pick me up. In the other provinces such as Saskatchewan the recipient has to make arrangements before the six week program is finished with there province to register and get picked up only in sk. I cannot be any further then 2 hours away from Alberta and if I am I have to let the transplant coordinator know and then they would put me on hold on the transplant list. So guess I'm stuck in Alberta for the next while till I get a call. Also there are rules when traveling in the air ambulance like how much weight can be brought onto the plane and only one person can come with me as the support person. I don't know much about that part yet because I haven't met with the coordinator yet to talk about all of that. I will be meeting with her before I leave.
2. Exceptional release- this is were the transplant coordinator let's me know depending on the condition of the lungs and the timing weather or not they have been able to test for different diseases and what not. For example they don't have enough time usually to test the donor for stds, some infections and stuff like that. Basically it is them letting us know that there are possibilities of certain things wrong with the lungs and I am aware of them and agree to the transplant still. They want to get the organs in the sooner the better because the least amount if time outside the body the better. They can treat with medications and such after the transplant if any thing were to show up or they haven't received results on.
3. While I am getting flown to the hospital there is a special team that flys to retrieve the donor organs. This is when they get more information and get to see the organs to make a decision weather or not that they will be a suitable match or if there is something wrong with them and they are not able to use them. This is called a dry run if something happens to the organs and they are not able to be used. Depending on were the organs are usually the recipient me will be at the hospital before the organs. Getting test and ready for the transplant. If the organs are going to be awhile to get then it may be even possible to drive because I only live two and a half hours away from the hospital. This would be better to me as I Love to Fly! NOT
Support Group Meeting April 30,2013
Today I had a support group class were we were all officially introduced to one another. Just the people waiting for transplants were part of the group. Most people have a support person with them weather it's their husban,wife,child, brother,sister or a friend. They are there to help with the process of waiting for transplant and are generally the person who is going to be with them after the transplant. Helping them make it to appointments, meals and groceries, keeping a person motivated to go to physio every day, tasks such as bathing and getting dressed. What ever kind of support a person would require before and after transplant. They have separate support group for the support people. The social worker and hospital Chaplin were the ones heading the meeting. Everyone went around and introduced themselves and said where they were from and told a bit about themselves and how they deal with there disease if they wanted to. Most people were pretty open with everything and talked about there disease and asked questions. Some in the group just listened. And I well I cried while each person told their story. I'm not use to hearing people talk about them being sick. It's usually me that is telling everyone about my life. One lady talked about how she has to still be sting because she is the mom and wants to be there still for her children and how she coulnt believe that she needed a transplant already. It hadn't sunk into her mind yet that she was as sick as she was and was needing a transplant. Another man was told two years ago that he needed a transplant and had worked around chemicals his whole life so he thought he was to blame for his disease and didn't deserve a transplant. He said he had nothing to live for before but now he has grandchildren and had a reason to live so just recently started the transplant process. Another lady younger then me talked about how she felt guilt for not being able to help her husband out at their business that they owned and how she found out that she had a rare lung disease and not to long after found out she needs a transplant. Another lady talked about smoking, drinking and doing drugs and that friends were bad influences on her. After she cleaned up she found out the damage that had been done to her lungs and she two needed a transplant. Everyone had a unique story of why they were all their now awaiting for a lung transplant. Also the previous group joined the class and spoke about how the program has helped them and what they were going to do to keep sting after going home. When it came to me speaking I had to apologize. "I am usually the strong one" "I don't cry" but when it was my turn to talk and tell my story I was ok I think because I had heard my story before several times. Hearing there stories for the first time just got me especially when I realized I have something in common with everyone of them.
I had a surprise visit tonight with my friends dad who I grew up beside and think of them as my second family. I had an awesome supper Gordon brought me take out from the Keg. I got a steak,baked potato,mushrooms,veggies,bread,ceaser salad and an awesome shrimp appetizer. And I ate pretty much all of it. To top it all off he even went and bought me some new workout gear from lulu lemon for the gym. Love the new gear! Truly an amazing family friend!
I had a surprise visit tonight with my friends dad who I grew up beside and think of them as my second family. I had an awesome supper Gordon brought me take out from the Keg. I got a steak,baked potato,mushrooms,veggies,bread,ceaser salad and an awesome shrimp appetizer. And I ate pretty much all of it. To top it all off he even went and bought me some new workout gear from lulu lemon for the gym. Love the new gear! Truly an amazing family friend!
Family Visit! April 27-28 2013
Had an awesome weekend visiting with the family!
Dad, Mom, Rod, Brandi, Tabitha, Jaimie, Dallyn, Jake, Hadley and of course Ryder all came for a visit.
I got to go on a pass and we all went for supper at one of our favorite Restaurant "The Continental Treat" it's on Whyte ave. It has been there for forty years or so and is hard to notice but it's has the best dill pickle soup in town! It serves polish food like weinersnitzel, lamb, and all different types of food and I haven't had anything bad from there yet. Defiantly recommend worth a visit!
After supper we all went to the hotel across from the hospital to visit at the hotel rooms my parents, brother-in-law, sister and kids were staying at. I got a super deal on the hotel rooms for them thru hotels.com I get deals from them when purchasing hotel rooms and they had a deal on for the rooms only ended up costing them around $14.00 yes that's fourteen dollars! Score prob never have that happen again two room suites for the price of a meal. It was nice just to sit around and talk and hang out with everyone. I brought Jakes birthday gift for him to open because I missed his birthday and wanted to watch him open it. He was so excited to get a truck with a quad and dirt bike with his own dog and hunter. We found it at cabbalas awhile back and thought it would be a perfect gift for him. Also I bought him a huge pop up book at the hospital that Tabitha thanked me for. She said thanks I already feel like a packed mule with having to carry around all the baby stuff and now Jake was probably going to want her to pack the book that was probably almost the same size as Him. Your Welcome Taba! Spent some of the night trying to figure out how to make bracelets from a kit Dallyn picked out. Finally Dallyn just took the kit and figured it out himself and made me a nice bracelet that I wear on my right arm!
While we where at the hospital waiting for everyone to get there before going for supper we got to watch the stars air ambulance land twice on top of the hospital. The one time the helicopter had to go in for a second attempt can't say for sure but it looked windy up there. Tried to get it on video but it's a much better view live.
When Rod and Ryder got hear I was so excited to see him he was quit excited to see me as well. It has a nice day out so we hung outside while we waited for everyone to get here. Ryder sure does get a lot of attention from all the patients walking by. Some of them are scared and totally walk as far away from him as possible but others and kids got a few good pets in.
I truly enjoyed spending time with family couldn't of asked for a better weekend wished the girls were here as well and we could all had some good visits and laughs and a few tears!
Dad, Mom, Rod, Brandi, Tabitha, Jaimie, Dallyn, Jake, Hadley and of course Ryder all came for a visit.
I got to go on a pass and we all went for supper at one of our favorite Restaurant "The Continental Treat" it's on Whyte ave. It has been there for forty years or so and is hard to notice but it's has the best dill pickle soup in town! It serves polish food like weinersnitzel, lamb, and all different types of food and I haven't had anything bad from there yet. Defiantly recommend worth a visit!
After supper we all went to the hotel across from the hospital to visit at the hotel rooms my parents, brother-in-law, sister and kids were staying at. I got a super deal on the hotel rooms for them thru hotels.com I get deals from them when purchasing hotel rooms and they had a deal on for the rooms only ended up costing them around $14.00 yes that's fourteen dollars! Score prob never have that happen again two room suites for the price of a meal. It was nice just to sit around and talk and hang out with everyone. I brought Jakes birthday gift for him to open because I missed his birthday and wanted to watch him open it. He was so excited to get a truck with a quad and dirt bike with his own dog and hunter. We found it at cabbalas awhile back and thought it would be a perfect gift for him. Also I bought him a huge pop up book at the hospital that Tabitha thanked me for. She said thanks I already feel like a packed mule with having to carry around all the baby stuff and now Jake was probably going to want her to pack the book that was probably almost the same size as Him. Your Welcome Taba! Spent some of the night trying to figure out how to make bracelets from a kit Dallyn picked out. Finally Dallyn just took the kit and figured it out himself and made me a nice bracelet that I wear on my right arm!
While we where at the hospital waiting for everyone to get there before going for supper we got to watch the stars air ambulance land twice on top of the hospital. The one time the helicopter had to go in for a second attempt can't say for sure but it looked windy up there. Tried to get it on video but it's a much better view live.
When Rod and Ryder got hear I was so excited to see him he was quit excited to see me as well. It has a nice day out so we hung outside while we waited for everyone to get here. Ryder sure does get a lot of attention from all the patients walking by. Some of them are scared and totally walk as far away from him as possible but others and kids got a few good pets in.
I truly enjoyed spending time with family couldn't of asked for a better weekend wished the girls were here as well and we could all had some good visits and laughs and a few tears!
Begining to feel like Work! April 24-26, 2013
I'm gonna start off by saying I have had to read my previous posts to see were I left off and I realized Wow my spelling really is terrible. I'm gonna blame it on the ipad. I think most people get the jyste of what I am trying to say. Hopefully! I'm beginning to feel like being here is like having a job everything is so scheduled and busy for me it seems like I haven't had time to relax lately. I'm even having to work my schedule around my visitors. But keeping busy defiantly helps pass the time and keep my mind occupied. I have officially started the 6 week physio program with a new group of people. Even though I've already been exercising at the gym for a week now Thursday April 25 was the first class with the new group of people waiting for lung transplants. There are 7 in the group with people from all around Alberta and Saskatchewan. Our first class together was Wellness Through Relaxation. It taught us different ways to relax and try to be stress free. Everyone introduced themselves in the class but it was a very quiet group. Not sure what has happened to me but I've gone from being super shy when I was in high school not that long ago! Ok maybe it was a w years ago to being able to be the most talkative person in the class. I am the only one in the group waiting for a second transplant everyone is waiting for there first so they don't know what to expect. So I thought I would speak up and tell them a bit about my transplant and what I have gone thru. They said it helped a lot knowing I had my transplant 12 years ago and have such a positive attitude towards everything I explained that rest is really important and being stress free. Or trying to at least. The occupational therapist did an exercise at the end of the class were we closed our eyes and listened to a short story she read out loud. I so almost fell asleep and was really into it I love using different relaxation techniques they really help with stress. This week my blood pressure has still been really high so my doctor increased my Ramapril and put me on another blood pressure pill Metoporal. My dr said my blood pressure is high bc one of my anti rejection drugs Tacrolimus is actually at a normal level and one of the side effects is high blood pressure. This usually happens when I'm in the hospital then when I am home I just take a low dosage blood pressure pill. I think while in hospital though it is pretty easy to take my pills at the exact same time everyday and have blood levels drawn at the right time as well. Were at home it isn't always an exact time between when I take my pills in the morning and whe. I get called in to get my blood taken. That wait can sometimes be an hour or more. I had a discussion with my doctor about waiting for organs to become available and how lots of people put there life on hold while waiting for a transplant because they think the organs will come and that just isn't always the case. He said not to put my life on hold just continue living as much as possible and don't wait to do things. Also don't over do it either make sure to know the limits if I am feeling unwell or tired be sure to rest as well. I believe it is important to spend time with family and friends and take it one day at a time enjoying every moment. Well that's all I have in me Tonight will update more tomorrow
Friday 3 May 2013
Lazy Friday! And Latest Weight Report! May 3, 2013
Today was my day to relax I took a day off from my daily routine and just caught up on rest and some relaxation. I didn't sleep very good last night I think I got about three hours sleep.
I have been getting my blood sugars tested at 3am for the past few nights because I have been having high blood sugars during the night so my insulin was adjusted and I have to be tested for the next few days to make sure I'm not getting to much insulin and I am going low in the middle of the night.
I have also not been able to wear the BiPAP machine very long at night because it makes my mouth and throat very dry and the hospital being so dry doesn't help much. There is a humitifier attached to it by the machine they had me on only has two settings making it to warm for me at the lowest setting. So tonight I am being put on a machine that is much smaller and is more like the one that I will have at home if I end up needing it at home. It has alot more settings for the humidity so hoping it is more cool and humid when I try it out tonight. Still has the same fighter pilot mask though so will prob only be able to go on shorter misisons!
I woke up a few times during the night and couldn't fall back alseep and then at 6am I was woken up so I could get a Blood Gas done while wearing the BiPAP machine to see what my oxygen levels are in my blood. They take the blood from the main artery in my wrist so doesn't feel all that nice especially if a nerve is hit. I have a pretty high pain tolerance and the Respitory Therapist doing it did a good job this morning my wrist is just a little bruised and sore.
So at 7 I am woken up again for my vital signs to be taken, then at 7:30 it is weigh in now a daily event. Then at 8 I am woken up again and told my breakfast is there and I need to take my blood sugars and do my meds. Then again at 8:30 I am told that my tube feed needs to be disconnected bc it was almost empty so I had to get up and unhook and flush it. I am so exhausted from the week that I just need to get a solid hour sleep. So after I eat my breakfast and can hardly stay awake. I let my nurse know that I am to exhausted and will not be going to physio today. So around 10:30 I finally crash and am not woken up till noon when I am reminded that my lunch is waiting and I need to check my blood sugars! Not complaining but sometime a girl has got to get her beauty sleep.
I got to see my Dr today bc of my morning schedule of classes and physio I have missed him for the last four days so today I wanted to see what the plan is for a going home date. My nutritionist had told me that possibly in a week or two was the rumor but after discussing it with my dr he suggested that I stay till I am at least finished my 6week program and I am a bit stronger and have put on more weight. So now looking like till the beginning of June. I'm not pushing to go home yet and agree with the doctor that I need to be good and sting before I leave incase I get the call for a transplant or if I get any type of infection. Also waiting on approval for home tube feed supplies and BiPAP approval
Dietitian came in today and went over a few thing with regard to the home nutrition program. She also has been getting me weighed daily to see if there is a trend happening with my weight. I know your all waiting for the number but you'll have to wait a few more sentences. I am currently still getting an additional 1500 calories a night on top of the approx 1500 calories I get during the day. The dietician wants me to increase to an extra can of formula during the day to see if the extra 500 calories will work. So now the weigh in reports.
April 26- 36.4 kg (80.1 pounds)
April 27- 36.3 kg (79.9 pounds)
April 30- 37.8 kg (83.2 pounds)
May 1- 37.1 kg (81.6 pounds)
May. 5- 37.1 kg (81.6 pounds)
So when getting weighed daily it is usually up and down but I'm averaging about two pounds a week which is an ideal weight gain amount per week. Hoping for it to go up a bit faster though.
Hope everyone has a wonderful weekend.
I have been getting my blood sugars tested at 3am for the past few nights because I have been having high blood sugars during the night so my insulin was adjusted and I have to be tested for the next few days to make sure I'm not getting to much insulin and I am going low in the middle of the night.
I have also not been able to wear the BiPAP machine very long at night because it makes my mouth and throat very dry and the hospital being so dry doesn't help much. There is a humitifier attached to it by the machine they had me on only has two settings making it to warm for me at the lowest setting. So tonight I am being put on a machine that is much smaller and is more like the one that I will have at home if I end up needing it at home. It has alot more settings for the humidity so hoping it is more cool and humid when I try it out tonight. Still has the same fighter pilot mask though so will prob only be able to go on shorter misisons!
I woke up a few times during the night and couldn't fall back alseep and then at 6am I was woken up so I could get a Blood Gas done while wearing the BiPAP machine to see what my oxygen levels are in my blood. They take the blood from the main artery in my wrist so doesn't feel all that nice especially if a nerve is hit. I have a pretty high pain tolerance and the Respitory Therapist doing it did a good job this morning my wrist is just a little bruised and sore.
So at 7 I am woken up again for my vital signs to be taken, then at 7:30 it is weigh in now a daily event. Then at 8 I am woken up again and told my breakfast is there and I need to take my blood sugars and do my meds. Then again at 8:30 I am told that my tube feed needs to be disconnected bc it was almost empty so I had to get up and unhook and flush it. I am so exhausted from the week that I just need to get a solid hour sleep. So after I eat my breakfast and can hardly stay awake. I let my nurse know that I am to exhausted and will not be going to physio today. So around 10:30 I finally crash and am not woken up till noon when I am reminded that my lunch is waiting and I need to check my blood sugars! Not complaining but sometime a girl has got to get her beauty sleep.
I got to see my Dr today bc of my morning schedule of classes and physio I have missed him for the last four days so today I wanted to see what the plan is for a going home date. My nutritionist had told me that possibly in a week or two was the rumor but after discussing it with my dr he suggested that I stay till I am at least finished my 6week program and I am a bit stronger and have put on more weight. So now looking like till the beginning of June. I'm not pushing to go home yet and agree with the doctor that I need to be good and sting before I leave incase I get the call for a transplant or if I get any type of infection. Also waiting on approval for home tube feed supplies and BiPAP approval
Dietitian came in today and went over a few thing with regard to the home nutrition program. She also has been getting me weighed daily to see if there is a trend happening with my weight. I know your all waiting for the number but you'll have to wait a few more sentences. I am currently still getting an additional 1500 calories a night on top of the approx 1500 calories I get during the day. The dietician wants me to increase to an extra can of formula during the day to see if the extra 500 calories will work. So now the weigh in reports.
April 26- 36.4 kg (80.1 pounds)
April 27- 36.3 kg (79.9 pounds)
April 30- 37.8 kg (83.2 pounds)
May 1- 37.1 kg (81.6 pounds)
May. 5- 37.1 kg (81.6 pounds)
So when getting weighed daily it is usually up and down but I'm averaging about two pounds a week which is an ideal weight gain amount per week. Hoping for it to go up a bit faster though.
Hope everyone has a wonderful weekend.
Wednesday 24 April 2013
Tuesday April 23, 2013- Woop Woop Weigh in day!
This WEEK IS ORGAN AND TISSUE DONATION AWARENESS WEEK IF YOU WANT TO BE AN ORGAN DONOR LOOK INTO YOUR SPECIFIC PROVINCE OR COUNTRIES POLICIES ON HOW TO BECOME AN ORGAN DONOR.
"LEAVE YOUR ORGANS HERE ON EARTH CAUSE HEAVEN KNOWS YOU DON'T NEED THEM THERE"
So this morning is the official third weigh in since I've started on tube feeds and yup Woop Woop I went from 35.8 kg (78.8 pounds) to 37 kg (81.4 pounds) since Friday. So 1.2 kg or 2.6 pounds. Must be all the body building I've been doing at the gym. My base line weight is apprix 42kg (92 pounds) so if I can at least make it back to my base line and beyond it will give me more of a chance to be stronger after transplant. Pretty soon everyone can call e "Fat Ames" referenced from pitch perfect which I'm sure you have all seen!
Today I had a busy morning i actually feel like I haven't stopped all day. It started off waking up getting usual vital signs and meds and just as I was starting my breakfast the Occupational Therapist came in to show me what programs were on the 6 week transplant exercise and getting ready for transplant schedule. I had done soe of the classes in the past with my first transplant but they didn't really offer as much as they do now. They even now have support group classes were you can listen and learn from others in the group. I am sneaking in on a few of the other groups classes while I'm in here and then will be officially with abgroup who is there for there 6 week pre transplant evaluations and some needing second transplants. So today while I was half way thru my breakfast at 9:15 I was told that a porter would be here to pick me up at 9:30 instead of 9:45 like originally planned. So yup 15 minutes to get my butt out of bed and try and get ready. NO shower for this stinky lady then other gym members may not have appreciated me today!
The class I took today was about an hour long and it was about sleep habits and hygiene and different ways to get proper sleep and how important it is to nap when needed and different thing that can be done to helpvfall asleep or things to do not before bed. Found out that the bedroomis only to be used for two things sleeping and sex. Anything else should take place in a different room so your mind can feel at rest when walking into the bedroom. Watching tv and IPads are no nos but they work for some people as I learnt today the majority if the people in my group dont have problems sleeping. We had to discuss what our nightly routines are when getting ready for bed and people said they have a light snack, watch tv, go on there computers and some even said they relax down stairs and both eventually fall asleep in there chairs and then eventually just move up to bed. I was the youngest person in the class so I told them what I have been doing for awhile especially since getting sick. I usually have a bath with candles every night and just meditateband relax that way I'm relaxed beforeni go to bed. Sometime I read as well and well ya sometimes I amto relaxed and fall asleep that's when I k ow it's been a good bath. Don't worry o always wake up before my face hits the water. Still It takes my mind about an hour to calm Dow. Before I can actually fall asleep once I am in bed. And our nightly routine is running the fan it tends to calm me as well and. Drown out another noises especially Rod and Ryders snoring! Man some nights they are so loud I have to go sleep Donwn stairs.
Anyways the gym was better then yesterday at least I checked the incline on the tread mill before realizing that is was up a bit half way thru my workoutnlike yesterday. Today i only had time to go on the tread mill for 20 minutes bf it was time to go back to my room for lunch. Good thing I didn't do weights today because when I got back up to my room my sugars were 2.4 just a little on the low side prob would have passed out had I stayed working out.
My diabetes has been really well controlled now that then insulin has been tweaked like 20 times. Right now I only have to take three needles a day. It sounds like list but before I was up to 4-5 needles. And I only have to take it once in morning once at night and once at supper depending on what my blood sugar is. So as long as I eat breakfast and lunch I'm good and don't have to take anything not even with snacks. Always a plus when there are less needles involved.
Today I started yet another job! So body builder in the morning, fighter pilot at night and now pop star during the day. They finally found an oxy Arm aka the Britney. It looks like the microphone head piece she wears during concerts. Yo can either direct the oxygen flow towards mouth or nose and it kept my oxygen levels up all day tomorrow I will test walking arond with it on to see if my levels are still good. This is giving my nose a break from the nasal canulas and hopefully it heals. I will post picture on face book and eventually here but for now on Facebook is were the pictures are at under "hospital life" album.
Monday April 22, 2013- a Bit of a rough Day!
Monday April 20, 2013
Well last night I finally got a good nights sleep. I switched up some of my care so the nurses and Respitory Therapist don't have to come in my room every hour. So now it's every two hours! I am a super light sleeper so I wake up at the slightest sound or I can just feel if someone is in the room I think it's my sixth sense. So my nightly routine is the 7:00 shift change nurse comes in and takes my vital signs. Blood pressure, pulse, oxygen sat and checks my respiratory rate. When checking a persons respiratory rate a nurse usually pretends they are taking your pulse but they are really trying to count how many breaths per minute. Anyways I know the trick especially when the nurse isn't even looking at a clock. So it's always hard to get a proper rate on me because I'm always thinking should I breathe now or am I breathing to fast. So I'm sure I've never had a proper respiratory rate for years. Anyways after vitals are done and they check my meds I'm usually free till 8:00pm then the respiratory therapist comes in and rechecks my oxygen sats and sees what my current oxygen rate is set at. They also turn on the Mission Machine and ask me what time I usually want to go on the Missio (BiPAP) at and I usually go on about 10:30 or 11 depending on how busy my nurse is because I cannot talk with the BiPAP machine on so I wait till I'm done with my nightly routing before I get the mask on. Then at 9:00 my nurse comes in and hooks me up to my tube feed so I can get my extra 1500 calories In for the night. So ya thats approx 3000-3500 calories a day. Then sometime between all of that I get ready for bed. At 10-10:30 my Respitory therapist helps set up the BiPAP machine and then between 11 and midnight I am hooked up to an IV med they have to flush my line and hook it up usually takes about 15 minutes. I take off the BiPAP during this because I hate not being able to talk while so eo es in the room. I enjoy talking with the nurses at night bc they seem to have a bit more time and I learn about there lives like one of my nurses is from Polland and he was talking about the war there and what his country and family went thru. Reminded me of the Band of Brothers movie all the stuff he was telling me about. Very interesting So now midnight it's sleep time. It usually takes my mind about an hour or so to relax and fall asleep. Then at 3am my nurse comes in to test my nightly blood sugar test at 3am so I am awake for another 15-20 minutes before I fall back asleep. Then at 7-7:30am I am woken up for blood test every second day or so and at 8am the new morning shift starts with a new set of vital, meds, unhook feeding tube, hook up another IV med, reorder any meds that are needed, eat breakfast(if you know me I usually eat my meals cold bc I take my time and enjoy my food), sometimes I get a shower in depending on when the nurse disconnects me if I'm disconnected to late I don't have time for a shower bc I have to walk down to Physio at 10:15 and then I'm there till 11:45 or noon before I get back to my room. Then I have my lunch till about 1. If I'm lucky I get to go for pulmonary function tests,x-rays or what ever tests the docs decide to send me for. So around 3 I am either trying to have a nap, drawing, face booking, trying to update my blog, message people, return phone calls and wait for visits from friends. Then its supper again and I am trying to relax after the day or get caught up with emails and some paper work. Usually I fit in a few more phone calls to my Hubby,family and friends. Oh and during the day and evening I fit in time to eat more food and snacks when ever I can. So when people ask me if I'm bored or what I do all day that's just a glimpse. Usually a few visits with other Dr and nurses from transplant team as well. So anyways I changed my IV med in the morning to come an hour earlier might as well get it at 7 I'm prob gonna have to wake up shortly anyways. So now that my med is changed I actually have time to shower in the morning before having to go to physio. And now at night I get hooked up to my IV the same time as my feeding tube at nine so the nurse just has to sneak in and hang a med instead of having to wake me up to flush and hook up my line. And so I can have at least 6 hours sleep at night instead of the three interrupted hours I was getting. I stopped getting my blood sugars tested at 3am. Not sure why I didn't think of all that earlier when I was having troubles sleeping.
Today my blood pressure has been high all day and most of the afternoon yesterday. Values of 146/102 if you know anything that's a little high for little ol me. I do take a blood pressure pill but sometimes the different meds I'm on in the hospital make my blood pressure spike so will prob be put on yet another pill. Also I have Ben more short of breath yesterday and today. Even walking to the bathroom gets me winded. I have been walking down to physio the last few times because the porter either tries to pick me up to early when I'm not ready or they don't have a proper time slot for me. Anyways I walked down today and had my oxygen level at 6 which is what I usually have my concentrator on while I'm walking and I'm on 4 liters when I'm at rest. I walked downstairs to physio and by the time I got down there I was feeling even more short of breath. The therapist tested my oxygen sats and they were at 76% normal is above 92%. Usually when I walk my sats drop a bit but not quit that much and it usually comes up once I sit for a moment. Today though I had to go up to 8 liters and wear a full face mask instead of my nasal canulas. I usually do better on the mask because I tend to be a mouth breather when walking or doing exercises that involve the bike or treadmill. Usually I've been going on tread mill for 20 minute at a 1.2 slow pace but usually I just prop my book on the tread mill and walk the full 20 minutes without stopping today was rough though. My sats eventually came back up to above the 90's but I would walk for about 5 minutes and have to stop because I was so out of breath and I felt really warm with the face mask on. My blood pressure was also high so my heart was working hard at physio today as well. I made it the 20 minutes thru physio and started to feel a bit better and the mask was helping keep my sats up so I decided to try the bike for 10 minutes. Nope that didn't happen after two minutes I just couldn't take it and had to stop. The therapist decided I should just continue onto doing my arm and leg exercise. I had trouble with them as well today but was able to take breaks between my sets of 10. Not sure if the lazy weekend set me back or there is an infection brewing going for x-rays tomorrow to check things out.
I have been having issues with my nose being dry since having to wear and require more oxygen. So last night I was blowing my nose and I had dried blood come out this has been happening for a week now. I had asked about getting nasal gel to help with the dryness but kinda forgot to remind to get it. So when I went to blow my stuffy nos I noticed it felt like the air was going between both nostrils. Upon further investigation I realize I have a hole between my septum. Like really what is this. I asked the doctor about it and he said he has never heard of it except in Cocaine users. Hmmm I hope he doesn't think I'm a druggy! Besides the legal prescription drugs I'm on. Anyways I looked online and talked to an RT and found out info about it. It can happen when on nasal Canual oxygen tubing I had the short ones in so then oxygen was directed at my septula and wears it down if it is weak If the hole gets bad some times plastic surgery is involved but right now it isn't really any concern. They gave me the nasal gel and are looking forbad different type of tubing called the BRITNEY. It's like a micro phone she would wear on stage and the oxygen can be directed at either the nose or mouth and is hooked up like a blue tooth device. so I never thought I would be so busy in the hospital. Fighter pilot at nit and pop star during the day. What else can I do while I pass the time in here.
My cousin Jenn and Marcel came for a visit tonight and brought me Thai food from Thai Valley Grill the first time I tried food from this week was the other week when Amy A came to visit me and brought me salad rolls with peanut and spicy ginger sauce and she also ordered me a chicken stir fry and coconut rice. It was so good that I have been trying to get someone to drop me off more. So when Jenn asked me if I wanted anything I said yes then exact same order Amy A brought me. It was delicious again. Thanks for the visit Jenn and thanks for introducing my to take out food other then "Swiss Chalet" Amy!
Hoping tomorrow will be a better day. Well it's midnight and no one should bother me till morning now so this chicks going to hit the sack and hope for another good night sleep. Good night everyone. I must be a sucker for working or keeping busy bc I asked Rod to put together the tax stuff and i could get it done bf the dead line. Either that or im a sucker for punishment. Oh and blogging must be helping my mind bc my blood pressure has dropped a a bit tonight but oxygen is up to 6 liters still. Will get it all straightened out tomorrow.
A Week in Review- April 15-19, 2013
So I have to start off by saying I am super behind with keeping everyone caught up but I have been so busy. I know your probably all thinking "what do you do all day". Well here it goes this is my week in review. Oh and hoping to be able to publish this tonight I have been having trouble sleeping so finally got a sleeping pills to help so if I fall asleep in the middle of writing or start sounding crazy we will blame it on the meds!
Update a few days later! Ok so the sleeping pill kicked in and I fell asleep was not able to complete much of my week in review. Feeling good tonight though so will be totally caught up!
I started going to physio this week. It is part of the six week program that lung transplant patients take before they qualify for the actual transplant. It is a way to build up the body so it is in the best shape possible for transplant. Also it is a way of seeing weather or not a patient can commit to something and they to be willing to try as hard as you can because after transplant it is a life time commitment. And if you don't pass the program then the candidate more then likely will not qualify because they will not take proper care of themselves after transplant. Not only is it an exercise program but they offer lots of classes like sleep hygiene and getting proper rest, wellness thru relaxation, emotional and spiritual well being, tour of the new ICU unit, wellness thru activity management, nutrition,what to expect after transplant, physio home program, as well there are support programs for patients and support person. A lot has changed in the last 12 years in shards to this program. They set it up with groups so you actually spend six weeks with people and I imagine make god friends. Also it helps to talk to people about what one another are going thru. When I originally went thru the program I just remember going to the gym every mon-fri and filing out a few papers with regards to physical and emotional well being. I am not doing all the classes but just the ones that I feel would benefit from or need a refresher. I think I got the what to expect after transplant covered having gone 12 years now. Also I don't actually have to do the full six week classes or physio because they already know my commitment and my success with the previous transplant shows that I can do it!
So I started going to the gym on Monday my official group doesn't start till next week so I will join them in classes then but for now I am just concentrating on getting stronger. Monday was a little rough I went on the exercise bike for about ten minutes but had to stop several times because my oxygen sats kept dropping to the low 70's normal is above 90. And I was having extreme difficult breathing and I wasn't even peddling that hard at all. I had been basically in bed and not able to walk around to much since coming in so it may take a bit to get back on track. I did ten minutes on the bike. Then I went and did four different weight machines leg press 45 pounds, vertical row 20 pounds, vertical press 20 pounds and leg curls 20 pounds. Physio therapist told me to only do 2 sets of ten but I pushed and did three sets of ten. Taking longer breaks in between. I was just happy to be finally getting some exercise in. I go to physio from 10:30 till about noon. By the time the porter took me back to my room I was so tired I crashed till 4:00. Tuesday was a better day we tried to switch my Basel prongs to a mask to see if it would help while I went on the treadmill. And it worked my sats stayed up at about 94% I guess I'm a mouth breather when I am walking so the mask is ideal for me. Except for the fact that it makes me feel real
hot and a bit claustrophobic. I walked on the treadmill for 20 minutes at only 1.0 but I didn't stop so I felt good. And I continued with the same weights as the previous day. By weds I was starting to get the routine down and starting to show some improvements in my energy I was no longer exhausted after spending the morning at the gym. well a little tired but not as bad as the first couple days. I have kept all my weights the same as they don't want me to hurt myself the first week.
Monday I also finally got a PICC line in after waiting for three days. I've had several in the past and because my veins are so abused over the years it's hard to get a good vein that will last for more then a day or two. The last time I got a PICC line in they had trouble getting a line in my right arm because of the different pathways my veins have created over the years. I guess a persons body adapts to things and can actually build new paths for veins to get around scar tissue and what not. After two try's the dr tried my right arm and said that my veins were more messed up on that side and had five pathways instead of the two or maybe three that most people have. They put In one with three ports last time and when it was put in I think a vein was nicked or something because for over a week my whole arm was bruised and swollen. So this time I asked if the dr could review my last PICC line procedure and he decided to try my left arm again also he out in a pediatric PICC because I also have tiny veins imagine that me having tiny viens! Lol the first attempt didn't work because he was having trouble getting the line around the arm pit area. Keep in mind the only drugs I get for pain for this procedure is a needle to numb the insertion site. It's actually not painful at all maybe it is for some people but I think I have a high pain tolerance then most people. Having not felt any pain after my transplant at all I was on some good pain medication then though. Anyways after about ten minutes the dr tried again and was able to get the line to sit were it is supposed to be just above the main heart artery. A PICC line is a plastic line that goes thru a main vein to deliver antibiotics and they last a lot longer then an IV if you want more info them there is always google sorry don't have the time to explain everything and am very grateful for google sometimes. So the PICC line went in good but I wasn't to impressed when I noticed that one with only a single lumen was put in. The dr said that it could always be placed if I needed to use it for more then just blood products. Usually they would put one with two to four lumens in depending on what is needed with just one it can basically only be used for medication and blood withdrawals. But cannot be used if I need blood products, medications that cannot be mixed, CT Scan dies or any other products that I may need in the future was thinking should have confirmed what they were going to do. The dr also told me that he didn't want to do the one with more ends on it bc they are bigger and didn't want to mess up any of my veins in case I really need them for transplant. Just hoping I don't have to get any other products bc it would be a waste of a PICC line. It sometimes sucks being a professional patient with over 25 years experience because I know to much and when I try and tell a dr or nurse what to do or they are not doing something right some of them dont like it. The student nurses however love me because I teach them how to run IVs and what normal routines are and stuff like that. I pretty much do a lot of my own care like I just do self meds because it's easier then having to wait for my meds every day to arrive if a nurse is busy. I put in my orders to my nurse every night and they stock my supply. I only like doing them when I'm feeling good though because when I'm not feeling well I like to be looked after. You know when I start feeling better because I start doing things on my own I now just hook up the BiPAP every night and am able to take it on and off when needed. As well I have learned a lot of tricks over the past years like how to get around the security features on the IV and fix them myself but this is not unusual for us professional patients. Nurses like patients like me because even though I have a lot of care needs I am a pretty easy patient. Years ago before they switched out the tvs for newer ones I even figured out how to get free tv that must have been when I was a lot bored and younger then I am now. And I didn't consider it stealing bc the tv lady new I was doing it and let me get away with it I had no money for the crazy prices they charge for tv rentals. You'd be amazed at what you can learn or pick up after the years spent In hospitals.
So it's almost 11:30 and I'm getting tired so this should be pretty caught up will add more during the week now that I feel like Im somewhat caught up. I have a lot more to talk about though and hope im not boring anyone to
Much with information over load. I don't like to read blogs that much that are long winded and have no pictures myself so got to work on that. Good Night Everyone and special thoughts and prayers go out to all my fellow Cysters and Fibros in hospital waiting for a chance to be able to take there first real breath! Oh I've met a few people in here waiting for transplant and one girl waiting for a living lobar lung transplant like the one I had but I'm go. A have to leave you all hanging for a day or so cause this chicks tired.
Sunday 21 April 2013
Weekend April 12-14, 2013
Friday April 12, 2013
Well today was my fat Friday which is wear I get woken up at 7:30am to hop onba scale and see if I gained any weight since Tuesday. They are very particular that I get weighed at the same time every Tuesday and Friday and before I put any food in me. So today I weighed in at 35.8 kg (78.7 pounds) that is up .6 of a pound from last Tuesday when I weighed in at 35.5 kg (78.1 pounds). So it's not much but I'll take it bc it's going higher. Next weigh in is Tuesday so this weekend I'm going to just try and lay around and get fat! As per my physio therapist instructions.
I had a busy weekend with lots of visitors. Enjoyed it very much and am so appreciative for the visits and the gifts everyone has been bringing me. I feel to spoiled!
So now I guess I should explain my new nightly fighter pilot job and missions. The BiPAP machine mask covers my nose and mouth and makes me feel and look like I'm training to be a fighter pilot. So far I am able to wear the mask for about three hours a night it makes me feel super closterfobic and it drys out my nose and mouth so Im trying to get use to it. Been using it about three nights now. Not sure if it is working or not yet. I basically fall asleep with it off and wake up three hours later and have to take it off it's like wind blowing in your fad while your trying to sleep. And the smallest mast they have is still super huge on me. Pictures posted on Facebook under my Hospital stay album. It is hard to get adjusted to how to breath with it I keep trying to think of how I am breathing and weather I should be breathing thru my mouth or nose. It doesn't really matter but when I breath thru my mouth I get more air into my lungs. So I'm having trouble falling asleep but once I'm asleep I'm fine and I just breathe naturally. Also when I'm sleeping with it on I dream I'm a fighter pilot I almost crashed the plane so when I woke up I had to take it off right away. Hmmm maybe some of the meds are kicking In a little to goods.
I can't write my blog without writing about Ryders adventure this weekend. For those of you that don't Ryder is my 140 pound Bull Mastiff he is like my child. Anyways on Friday while I was visiting with Gina and Leanne my Kinette friends my cell rings and I didn't recognize the number so I didn't answer it. But then they called right back so I answered my cell and the guy on the other line asked if I was missing a dog. I said I don't know if I'm missing a dog he is currently at my parents house this weekend. I asked the guy if he could stay were he was at till I could contact my dad who was watching him. Funny thing though about 20 minutes before I received the phone call I had a feeling and thoughtn I would text my dad and ask him how Ryder was doing. He texted me back and said "we are at the shop with the dogs" and Tabitha texted me as well and said "we are just working on a goup project" I didn't get that text till later on anyways. I called my dad and when he answered the phone I could tell he seemed really worried and panicked. I Told him I just got a call that someone found Ryder in the ditch on the highway. That's what the guy told me when I talked to him. Right away my heart sank as so did my dads. Thank God he was in the ditch but not hurt. He had just crossed highway 16 and was hanging out between the two major highways. My dad explained to me that they had been looking for him for a couple hours and were so worried that they were going to have to call me and tell me they lost my SON. Anyways needless to say Ryder didn't leave my parents site for the rest of the weekend. I had also literally just got him micro chipped and tags put on him about a week or so before I came into the hospital. I would not imagine what would have happened had there been no tags on him. Oh and while Ryder was on his adventure he somehow got some oil on his paws and got it all over my mom and dads house. So needless to say mom and dad prob didn't have then best experience this weekend. I am so happy everything turned out and Ryder was safe. Don't worry dad Ryder is still going to come for sleep overs at grandpa and grandmas.
Anyways not much happens around here on weekends in regards to test and what not. Just get a lot of time to get in visits!
So Im off on a Mission for the night hope everyone had a good weekend! Good night!
Monday 15 April 2013
Back to Familiar Grounds- April 11-12,2013
April 11,2013
So the past couple of days I have been having more trouble breathing. Just getting up to walk to the washroom is a struggle. I am having to take three different puffers several times a day just to catch my breath. It takes a good 10 minutes for me to recover from walking that short distance. So Dr Weinkauf one of the three transplant docs decided I may have an infection coming and should get on top of it. So after being here for three weeks I am now for the first time having to get IV meds. This is very strange for me not to have had any IV meds since arriving usually they are piling them up on me as soon as I get in. So I am now on piperacillin one of the many go to drugs I get when there is an infection brewing. Also he increased my steroid dosage from my regular 5mg a day to 20 mg a day. The bonus of getting extra prednisone is it usually works pretty good for opening up the lungs and helping me breath and it makes me hungry all the time so now my appetite is starting to increase which is nice because honestly I need something to help get me past the same boring menus that haven't changed in the past 12 years that I have been coming to this hospital. It is good that I get to some what pick what I want to eat but am limited to option there as well. Also he suggested that I try going on a bipap machine at night to see if it will help get some more air down into my lungs while I'm sleeping possibly helping with my fatigue during the day and maybe help open up some of my lobe. BiPAP therapy is positive airway pressure that helps open up the lungs when breathing I. And out. The BiPAP machine is used to detect how much pressure a patient needs and supplies the adequate amount of air pressure on inhalation and exhalation. The dual settings of a BiPAP machine helps get more air into and out of the lungs without the normal muscular activity needed to do so. I agreed that I would be will to try the BiPAP machine right now I'm willing to try anything to get some relief. I had been put on a BiPAP machine several years ago before my lung transplant but refused to wear it more then 5 minutes because the mask made me claustrophobic and the dr who was treating me at the time was a resident and didn't know really any of my previous medical history. So in order to be on the BiPAP machine I had to be moved to a different unit the same unit that I have spent most of my time while in the hospital. So much time before transplant that I have been in every room on the ward but one. This ward is the pulmonary medicine ward where there are respiratory therapists there 24/7 to run and monitor the patients on BiPAP and ventilators and such. So on my way back to 5E3 "were everybody knows my name and things are always the same".
When I was first admitted to hospital I packed 1 bag but enough stuff that if I was going to stay awhile I should be good. Well I guess not bc the three weeks I was on the gastro ward I have some how collected enough stuff to fill 6-7 hospital bags a full cart of stuff. Better then last time I was in I had my own office set up photocopier, fax machine, lap top the works for my own in patient office. So I thought this time I was doing a lot better.
I know I have a lot more to say but I am super exhausted after the day and wanted to post something on my blog last night but a weeks worth of info is a lot. I thought I would get it done tonight but that's gonna be mission impossible. So for now I leave you all with my current up date and hope to get the rest done tomorrow then hopefully things will slow down here a bit and I can update it every two days instead of once a week. I know that the people that are following my blog are waiting patiently for me to post more news so here is some more hope you enjoy! Good Night and God Bless. I'm off on a mission now (will explain that in my next entry) Also pictures to come soon as well.
I know finally an update! April 7-April 10, 2013
Over twelve years ago I would have given anything to just have one more year. I was waiting on the transplant list and my life had come to the point were Cystic Fibrosis was winning the battle I had fough my whole life. I was listed on the transplant list approx June 2000 and was pretty much living in the hospital I'd be out for a week and back in the hospital for a month. When I was home I had lost my independence I had meals on wheels coming to my house and home care helping clean I basically only had energy to lay on the couch all day. But when I was feeling well I thought hey maybe I'm gonna beat this and would-be able to go out and enjoy somewhat of a normal life until the next time I got a lung infection and was back in the hospital. Soon after being listed for transplant the doctor told us about the option of a Living Donor Transplant which we ended up doing because my time was running out and I only had 3 to 6 months survival without the transplant. Two very caring, courageous, and giving men, My dad and Richard gave me one of there lobes for me to live and gave me a second chance at life. A year after the Living Lobar Lung transplant I was living a pretty "normal" life I was taking more medication and it was a bit of work doing personalcrecord keeping but I was now breathing free and able to finally go out and enjoy life. Actually I couldn't wait to start life again start dreaming of realizing those dreams. I went to college, travelled, got married, started a company with my husband, got to meet my now 3 nieces and 3 nephews. Also I got to do lots of public speaking to tell my story. I have done so much I wanted a year, then when that came I just wanted 5 years and now I realize how time truly does fly and I am wanting more. I enjoy life and want to live. And now I am told that I may possibly get a third chance at life. It is hard for me to think that I am possibly going to be given a third chance at life. Especially when there are people who don't even barely get a first chance at life. My life even though I have always been given a timeline. "your only going to live to 9, you won't make it through your teens, forget about seeing your thirties. I'm now 34 and can't imagine how blessed I have been over my life even though most people consider me sick and say that poor girl I consider it a blessing bc withoutnthe struggles I have been throughout my life I would not be the "Strong, Insperational" person I am today and thank everyone for your kind thoughts and prayers. My view on life is that God has already set a plan out for my life and even though not everyone would agree that Cystic Fibrosis, Diabeties, Cervical Cancer, Hysterectomy, and not being able to have my own children (besides my furry ones) isn't fair I believe it is all in the plans and have never judged for the plan that was set out for me. I have 100% trust in God and have never been angry for the cards I have been dealt. There is always someone who is worse off.
April 6-7, 2013
So to begin my updates from over the past week. On the weekend of April 6-7 I finally got to meet my new adorable nephew Hadley Ames who I've already prob already wrote this but I was honored when Tabitha named him after me by giving him the middle name Ames. Even though Tabitha reminds me of being a child and my mom using my middle name only when I was in trouble. Oh I can hear it now "Amy Louise" put that back or get down from there. So sorry Hadley Ames you may only be reminded of your amazing Auntie Amie when your momma is yelling at you. Lol Taba. Oh and for those of you that don't know I spelt my name Amy up top because that is how my mom had originally wanted to register my name at birth but bc of a mix up I ended up being Aime on my birth certificate and now bc I didn't think that made sense in grade four and I wanted a longer longer name I started spelling it Amie and still spell it that way to this day. It was exciting to visit with mom and Tabitha as well but the goal was to meet Hadley!
The next day two out of my three favorite nieces and one of my two favorite sisters came for a visit. Brandi my sister and Chayce and Kamryn my nieces. They got to dress up in there yellow hospital gowns and gloves and visit with me in my room. After about 2 minutes the girls were bored and wanted to tour the "club med"I have been hangin at. So we went down for a tour. First a bite to eat at the delicious cafeteria "hmmm" then we start to make our way to the healing gardens in the Heart Institute part of the hospital. And the questions start. Auntie Amie what's wrong with that person, imagine if this was your real house, were do the kids hang out, can we hang out there It's my turn to push the wheel chair. They were so excited that I was having trouble keeping up with both of them talking and trying to figure out this hospital life I have been living the past three weeks. Oh and Kamryn had to make sure I was strong enough to hold Hadley when he was here because he was 9 pounds and I'm not very muscular. Lol love kids questions always make me smile.
Monday, April 8,2013
Today I finally meet with my surgeon Dr Mullen who did my first transplant. I had been waiting for him to go over my scans and test results. This only being the third time I've seen him since after my surgery I was so glad to see the kind caring man who had a HUGE part I'm my transplant being a success. He was happy to see me again and even though could have been under different circumstances we were glad to be finally meeting up for a long over due chat. He told me that he would be willing to do a re transplant but there would be a few more complications then the first. First of all I have been on anti rejection drugs for twelve years now which I will always be on but can cause complications when there are new organs introduced as well as how they can affect different areas of the body, scar tissue from the previous could be an issue when trying to remove and re hook up then new and old lungs if there is anyone I can have confidence in Dr Mullen is defiantly known as being a well qualified surgeon and would be the only surgeon who would be willing to do a re transplant. He tells me that In an ideal world he would like to do a heart/lung transplant because it would be a better surgery for me to remove my lungs and brokencheart. But this isn't always the case and bc of the shortage of organs they may have to take the first type of organs that come in either heart/lungs, double lungs, or a single lobe. If only lungs or a single lobe are available he will repair my mitro valve while I am having my transplant. He tells me that there is going to be a bored meeting the next day with everyone who would-be involved to discuss my case. He reminds me that my biggest struggle will be getting organs.
Tuesday, April 9, 2013
Today is the day that everyone involved in Transplant meets and discuss their cases and the one case will be mine. The transplant team consists of my pulmonologists, surgeon, nurses, physio, social worker, hospital clergy staff and who ever else is involved. The feed back that I received is everyone was in support of me having a second transplant and bc of the success of my first transplant and the way I have taken care of myself they all liked my positive outlook on life.
Weds April 10, 2013
So as of today I was officially activated on the transplant list as a stage 2 which is the most critical need for organs list. For those of you who don't know how the Active Transplant List works this is what I have learned. When organs are available within Alberta they are checked against the people on the list waiting for organs from Alberta and if a match is found they give the organs to the person who is in most need or the sickest perso. If two people are good matches they consider who is the most critical and in need and who will have the best chance of survival or who the organs will most benefit. In most causes the persons size and blood type are the most important and they also do matching and some sort of tissue matching with both donor and recipients antibodies. I am going to still face the same harsh reality I faced with the first transplant. I am small, and my body has a lot more anti bodies against other peoples tissue then normal because of the years of anti rejection treatments and my built up of more anti bodies towards more people's tissues. And if organs are not needed in the province that they are in they are offered to another province or state that has someone who matches they will send organs out that way if the time applys to getting the organs to the recipient on time. I guess Edmonton receives a lot of organs from BC and California because of the closeness to Alberta. Also some people are not aware of the process whe. Someone becomes an organ donor. First of all the medical team looking after the potential donor and the transplant do not work together until a final decision is made and the donormis considered to be "brain dead" at this time the only thing keeping the donor alive is the life support system. If there is any brain activity at all the patient is not considered a donor. If the donor has organ failure bf there brain is considered not active then they do not qualify as a donor because you are still considered alive if there is any brain function at all even though there is virtually no chance of surviving and the person will pass away they must be 100% no brain activity. So the donation rate is not very high because of the person have to be legally brain dead and they have to let there family know there wishes. There are some provinces that have moved to a donor registration like Ontario and have a higher donation rate then some of the other provinces without registration. This information is as accurate as I know it to be if anything is not please let me know ASAP. Please if you have questions about organ donation please feel free to email me or just ask and I can give forget you the information you are looking for. Most Importantly if you are wanting to be an organ donor please either register if you are in a province that has registry and/or let your family know what your thoughts and wishes are for donation if your life ever came to that because your family if the one who ultimately has the final say unless you have some how expressed it thru registration or thru a document of some short. Don't take your organs to heaven with you. Heaven knows we need them here.
I was so into talking about and trying to inform everyone about organ and tissue donation that I forgot to explain how I am being listed on the transplant list. I am being listed as needing one of three of the following options and I explained it above kind of I think. Anyways ideally they would like a heart/lung transplant were if the organs came as a set it would be safest for the surgeon to remove my scared lungs and leaky heart and put it all in as one package. That way the surgeon is not dealing with the scar tissue and having it affect all the different hook ups that need to be done, second is a double ling transplant where they would replace my current lobes with a full set of lungs and repair or replace my mitro valve in my heart. And thirdly just a single left lung transplant which would have two lobes so I would end up with two lobes on the left. And one on the right so one more lobe then I have been working with the past 12 years and again they would repair or replace my mitro valve. The surgeon said that they need to list me the three different ways because I will have a greater chance of receiving organs and because of the rare chance that organs of my size and tissue type don't come along very often they aren't going to take any chances.
Tuesday 9 April 2013
Yikes AWAKE during Surgery!- April 5, 2013
Today I try to sleep in a bit I have been getting tube feeds nightly so I'm still getting use to being hooked up at night. It makes it interesting trying to go to washroom at night between the oxygen cord and the IV pole with the tube feed machine and the two plug ind everything gets tangled and if anyone knows after having a hysterectomy and radiation and chemotherapy near my bladder I cannot hold it very long so ya it's usually a mad dash to the washroom tripping over all the cords. Even had to leave the door open a few times. Did I mention the people on the glass elevators have a clear view to my room and bathroom. Just hoping no one is on the elevators at 3am. So maybe a bit to much info. Anyways the tube feedings are going well except I don't feell as hungry in the morning for breakfast which is my favorite meal here. I'm usually hungry by lunch,snack time,supper,more snacks, and more baked goodies and snacks from friends and family. There's no way im not gaining any weight.
At 10:30 a porter for physio shows up to take me for a six minute walk test. I am thinking I don't think I'm going to be able to do a walk test bc I am still in pain from the feeding tube procedure. The Porter said well it's booked so I need to take you down. I'm thinking ok this may be a waste of time but I have not seen any of my physio friends for a few years so I'm willing to go down. When I get there there's no physiotherapists that I recognize so they say we will try the walk test and see how I do. This involves walking around a hallway and see how many laps I can do in 6 minutes. I get this test once a year and the last time I was able to do 7 laps. This time i have an oxygen bottle to pull which causes more strain on my stomach. I start the walk and am barely halfway around and I start a coughing attack which is worse on my stomach. I keep walking though I am in pain and really short of breathe the pain is actually so bad I start to cry. Another physiotherapists sees me struggling and gets me a chair right away. They hook me up to an oxygen sats monitor And my sats are 71 which is really low if you don't know about oxygen numbers. Above 90 is a good number for me but ideally 95 or above is the norm. So we rebook the walk test for Monday by then my stomach should be better.
This afternoon I met with the anesthesiologist Dr Finning who was there for my transplant 12 years ago. He basically reminded me what his job was keeping me asleep and safe during the transplant. And he reminded me of the different lines that they put in during the procedure. They will put in a blood pressure line into my artery in my wrist and a catheter into my vein in my neck and I will have chest tubes, a catheter and possible more IVs depending on what is needed during procedure. Most of this I remember. He also tells me about being on a heart lung by-pass machine for the duration of the surgery. This is a machine that takes over for the heart and lungs and the blood is ran thru the machine instead of thru my heart and lungs. Then he tells me or warns me that there is a possibility that I may be awake for part of the surgery. Wait a minute AWAKE during the surgery! I guess sometimes they have to back off some of the anesthetics to see how my new organs are going to work this is usually just for a few minutes and then they give me more anesthetic. I may or may not remember this but he has to tell me about it incase I freak out and that can be dangerous. I won't be able to move or do anything just hear stuff but if this happened and I didn't know what was going on I could panic and cause my blood pressure to become unstable. I don't remember being told this before but that was 12 years ago so my memories not super good. I always said that I remember hearing music during my last transplant. I remember hearing the same song over and over so I don't know if it really happened or not.
Getting excited for tomorrow and probably won't be able to sleep I get to meet the newest member of the family this weekend Hadley Ames Ballan was born March 27, 2013 while I was here so ya going to have an exciting weekend.
Saturday 6 April 2013
Who Ever Said You Get Sleep in a Hospital-April 4, 2013
I had a terrible sleep last night or wait a minute I didn't sleep at all I had to be woken up every hour to have my blood sugars tested bc they decided to put me on an insulin drip while I was not able to eat those few days and until I can eat again not till 5pm tonight. Haven't eaten since Tuesday! Every time they took my blood sugars they had to adjust the insulin dose I was receiving. oh and I was thawing up from the pain medication I was getting so that was fun as well
And they come tell me at 8:15 that I am booked downstairs for an ultrasound and x-ray. Might I add I am in pain from my procedure yesterday. I am getting gravol and Dilaudid which are helping but basically make me fall fast asleep.
The ultra sound is part of my transplant work up. They tech takes images of all of my organs including my carotid artery to make sure they are fine and my artery is going to be ok for getting another catheter put in when a second transplant happens.
I have x-rays of my back, spine and jaw. This measures the size of my chest cavity and spine and my jaw to make sure the tubes will have no problem with getting the tubes down during transplant surgery. I am downstairs having these tests for over 3 hours.
That was my day today probably going to sleep for most of the day from the lack of sleep last night and the cocktail of painkillers. Oh ya I'm so not complaining about anything just trying to keep this blog honest with everything.
Today I get a Feeding Tube and Hopefully on My Way to Fatsville- April 3,2013
So finally today is the day I get a feeding tube put in my stomach that will hopefully eventually lead to me putting on some weight for transplant. I know most people wouldn't post this but my current weight is 75 pounds and I am hoping to get up to at least 90 or as much as I can.
So I am waiting no breakfast,no snack, no lunch! They better not cancel on me I'm trying to gain weight not go on a three day fast. Finally at 3 they call for me to go down to radiology. Usually the gastro team is responsible for putting in feeding tubes but they are doing mine in radiology because they cannot give me general anesthetic bc I am currently on 4 liters oxygen and it could be dangerous if I am put to sleep. So I get to be awake during the procedure. I have confirmed with my transplant dr and my gastro doc that I would be given some sort of sedation and also trying to confirm if it was the kind that makes you not remember. Neither could confirm but said they would make me comfortable in radiology. Ok so I'm going to be awake and going to remember them insterting a tube into my stomache. Now I'm a bit nervous ok I'm nervous as heck.
So they bring me into the room I recognize as the room that I previously had my PICC line put in as well as a catheter in my arty when I had to do plasmapheresis. The dr starts by asking me some of my medical history and if I ever had any surgeries on my stomach. Nope just appendix, hysterectomy,gallbladder, previous feeding tube (also known as my second belly button, and yup no stomach surgeries. Dr told me the x-ray shows that my liver is a little inflated and goes bellow my ribs into the area where they needed to put a tube in. They where going to do an ultra sound and see what they had to work with. Dr asks do I have any questions Yup what are you doing for sedation and will I remember this procedure. Yup I'm gonna remember the procedure but should not feel any pain this was guaranteed by the "Angel" pain med nurse.
As I get on the table I am shaking like crazy. They look at the ultra sound and said it looks like there was a good area to work with and they would be putting three needles into my stomach. Two to stitch the tube to the stomach lining and another one to puncture a hole for the tube to be put thru. Ok were are these sedatives they told me I would be getting. Ok so I finally get some the dr tells the nurse to start with a small does bc I'm small I'm thinking why not start with the normal dose bc I'm still shaking and nervous. She gives me half the does and nothing happens I am a bit calm but there's no way this is how I'm going to be during this. Then the dr says I don't think it's affecting her go ahead and give the remainder of the dose. Yup that worked I felt like I could fall asleep but did not just staired up and didn't think what was happening. And about 15 minutes later there done I couldn't believe it done so fast. So Yup I was panicking for no reason. Felt nothing what so ever. Man I over think stuff and work myself out for no reason. I actually do it every time I go in that room to have a line inserted and every time nothing it's not painful and procedure is way quicker then I think.
So in 36 hours I can start eating while I sleep!
Thursday 4 April 2013
More tests results and finally NG tube is a success- April 2. 2013
Finally I get the NG tube in today. The nurse that did it was good and gentle and it went in with ease. After the nurse sets it all up she tells me this was only her second time doing one! Man is she ever lucky she did a good job. Lol so bc they couldn't get the NG tube put in they decided to book it tomorrow instead of today. So now I have to fast till my feeding tube procedure.
I also had a cardiologist come speak with me regarding my test results from my Echocardiogram. I have always had a slight heart murmur or leak in my left value but it was never anything to be concerned about bc lots of people have them and they don't even know it. I guess the leak has gotten bigger so now my heart is pumping blood from the left atrium to the left ventricle and blood is flowing back into the left atrium making my heart pump more blood the is needed and if it gets worse or doesn't get fixed there is potential for heart failure. Awesome first my lungs and no my heart. So now the surgeons have to look into two different options for my transplant either I have a lung transplant and they fix the valve at the same time or I go on the list for a double lung/ heart transplant. The surgeon is deciding what is going to be the best option for me.
So I had to start fasting again at 6pm and I only got supper today to eat bc they thought I may still be getting the feeding tube today so now I wait again till tomorrow to have my procedure. Now I have to start the IV meds all over again. And now I have to hurry up and wait
NG Tube-0 Fainting Nurse-Priceless-April 1,2013
Hope Everyone had a Wonderful Easter Weekend and hopefully you didn't fall for any April Fool Jokes!
Today I am getting prepared to get my feeding tube put in so I can try and become a "Fatty" and put on the weight I will need to go thru transplant.
So I start to fast at 6pm and am only aloud sips of water so I can take my medications. I am also starting an IV medication called Pepcid (famotidine) which reduces the acid in my stomach. I also have to get an NG tube put down my nose so that it can be completely empty and have no fluids. The NG tube usually hurts my throat but I can handle it for a couple days. It also gets in the way when trying to sleep or walk around. Actually the last time I had an NG tube in I accidentally pulled it out by getting the cord caught on the edge of the toilet seat. Yikes!
So at 9pm the nurses are finally ready to insert the NG tube which I am not looking forward to but have had them several times before so I'm a pro at getting one put in. My nurse and a student who is working her first shift prepare to put the NG tube in. The student nurse just stands back and watches. So my nose has been really dry and stuffy because of the oxygen I now have to wear 24 hrs a day. The nurse tried my right nostril and could not abet the tube put in so I let her try again but on the left side. So she attempts to put it in the left side and all of a sudden I start couphing up blood because she nicked the back of my nose it was almost in but she had to stop and attend to the student nurse who almost passed out hit the floor. The nurse ran over and caught her. She couldn't even stand her legs where like jello and she had no clue where she was. The nurses had to call the medical team to come and see what was wrong with her. She ended up having to go to emergency and eventually came back up stairs to work. She had panicked when she saw the blood coming out of my mouth and she hadn't seen that before. So I'm hoping it wasn't a sign that she chose the wrong career. So since it took so long for them to attend to the student nurse they are going to try and put the tube in tomorrow morning.
Monday 1 April 2013
A New Adventure To Begin- April 1, 2013
So today is April Fools day so I waited till afternoon to post this blog!
I Have decided to go ahead and continue with the testing to prepare for me to be listed for TRANSPLANT!!
Tomorrow is the first step to get me fat! I am getting a feeding tube put in and hoping this will help me gain some weight. As I said in the previous post my body is using up most of my calories and energy to breath. So I need to eat 24 hours a day to help with this issue. I will eat normally during the day and the tube feed will be done at night.
So I am asking for your prayers for the road I am about to travel down again and hope that second time is actually a charm!
Hope you all enjoy my blog and I will try and keep you all posted on any new news.
Finally Some Answers-March 28,2013
Finally talked to my dr today and he had a meeting with my surgeon about me. My surgeon looked at my scans and said that he is willing to do a transplant. He is known as the best lung surgeon here and did my first living lobar lung transplant. He is the only one that would be willing to do the surgery bc of the risks. Dr also told me there is nothing else they can do in regards to try and stop the rejection and don't want to risk my Body getting more because it wouldn't be good if I had the transplant and killing more of my immune system will not benefit me right now. I was also told that in order to qualify I need to put on some weight so I'm booked to get another feeding tube put in tomorrow April 2,2013 hoping this will help me put on weight bc I have been eating pretty much everything on my meal tray and still managed to lose weight bc of my breathing difficult my body is using most of my food energy to breath. When my Dr of 12 years was telling me the news either it's a transplant or lung failure he had tears in his eyes. Man how do Dr deal with having to give their patients this kind of news! So I called my parents and my husband and told them they needed to come in for the Easter weekend so my dr could explain what was going on with my lungs. I had prepared my family back in December that this day was coming but having to call my mom and tell her the news and my Dr wanted to speak with them was one of the most difficult thing for me to do.
Also Surgeon has to come up with a plan to decide if it is better for me to have a lung transplant or heart/lung transplant because of the scar tissue it may be easier to put in a set of lungs and heart instead of trying to piece in new lungs. But they still have to look into both surgeries.
My parents and husband came in on Saturday March 30 to get the news and details of the plans for my future. My Dr explained to them pretty much what I wrote in the previous paragraph. They all handled the news really well and we were really strong with only a few tears shed. It is best to be totally honest with family as to what is going on with my health so they can better prepare for the future as well.
I didn't tell my sister Tabitha till last night March 31 bc I wanted her to enjoy her new bundle of joy. Back in December I told her that I was probably heading towards a transplant but wasn't sure if when the time came if I would consider another transplant. But when I told Tabitha I assured her that I was willing to do anything to be on this earth longer. I still haven't told my sister Brandi till tonight because she has been stressed out so I want to wait till she is feeling a bit better.
I believe that God already has a plan laid out for me so whether or not I decide to go on the transplant list it is already planned out for me. I am so grateful that God had a plan for me to enjoy so many things over the past 12 years. I am grateful I got to travel, get married, meet my 3 nieces and 3 nephews,and have a pretty healthy life over those years. Nothing was ever taken for granted.
Test Results Back-March 26,2013
In June to Sept of 2011 I was in the hospital for six weeks dealing with rejection of my left lung. My body had built up anti bodies towards my donor Richards lobe so after getting blood from both my donors Richard who flew down from Florida and my dad the test results came back that my body was building up the anti bodies towards Richards lobe. So they tried four different anti rejection treatments trying to stop the lung from being rejected. They were able to slow down the rejection but wernt able to stop it soon enough to do some damage to the left lobe
March 26, 2013
Now my test results showed on my lung scan that my left lobe is starting to die. My heart is pumping blood to the lobe but the lobe is not able to return oxygenated blood to my heart causing my right lobe to have to do most of the work for breathing. My left lobe is functioning at about 10% and my right lobe is just slightly reduced. I am waiting to get copies of my test results so I can better explain everything or make sure I'm not explaining it wrong. Most people including Pope Francis can live off of one lung but because I only have lobes and one isn't functioning well I am guessing my lungs are functioning at about 15-20% of what a normal persons lungs would be. So my Dr explained to me that he needed my transplant surgeon to look at the scans to see if anything can be done. He also explained to me that I am kind of stuck between a rock and a hard place that I will more then likely need another transplant to survive or I can just live out my life until my lungs eventually fail. A second transplant is risky bc of scar tissue from my first transplant,the rejection drugs I've been on for the past 12 years,diabeties, stomach issue, and when I battled cervical cancer the chemotherapy and radiation affects cells in the body as well. My first transplant I had a 95% chance of surviving one year for a second transplant it's about 75% bc of all the mentioned risks. Also it was tough to get a lung transplant the first time and I eventually had to do a living lobar so If I go on the transplant list again I would have even less of a chance of getting lungs then the first transplant bc my body has built up anti bodies towards certain people's blood and tissue so I would have to wait for lungs that would be the proper size, blood and tissue type. And I don't even know if my surgeon would be willing to do another transplant. So still a bit in the air with whats happening till thunders and surgeon can meet.
Subscribe to:
Posts (Atom)