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
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