My Story From The Begining

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!

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