Nothing much has been going on here. I go back to Seattle on the 4th of Feb. for the usual visit. I will have the ex-ray, blood work and breathing test done.
We are all doing well here and I am looking forward to doing some of the things that I haven't been able to do for a long time like working in the yard, washing the cars, etc. I know it sounds funny but I was so happy that I was able to sweep the garage floor and vacuum the other day :-). Its funny I catch myself some times not doing something or asking Deanna to do it because I couldnt do the task before the TX and then the light bulb comes on that I can do it now! The energy that I have now is so different than before and it feels so good to do things again and help out whereas I couldnt before. Deanna and my brother did everything up to the transplant. Now they can rest and I can take over :-).
I mailed off a letter to the donors family a few weeks ago but have not heard back from the agency that handles the contact with them. I am hoping they will respond, but I will understand if they have choose not too.
The new picture is my pill case, it holds all my meds in slots for each day and time slot for a week. Its kinda nifty to have and keeps you organized so you dont miss a dose. My regimin every day is to weigh myself in the morning, check my blood sugars 4 times a day, check my temperature morning & night, check my blood pressure morning & night, check my pulse morning & night and I have this little machine that I blow into that checks my breathing numbers I do that morning & night as well. My brother and Deanna tease me because I have this black carry- on like suit case with a handle and rollers that I wheel around the house with my stuff in it.
I can see how some one that did not have CF that wasnt used to a regiman of meds and dealing with taking care of your self in that way would be very over whelming to some one and scary to say the least. Looking at what was given to me, the trade off of what I have to do is just a small thing that I am more then willing to do for myself and my family. Some things that people dont know that a transplant is a trade off of sorts. Even though I was given a second chance and that my new lungs dont have CF anymore the rest of my body still does, so I still have to deal with having diabetes and also continue to have to take 12 enzyme pills with each meal to digest my food. The new things I have to deal with is the possibility of rejection of the new lungs. I guess to step back a few when I first was told that I needed to check into having a TX which was back in the fall of 2003 I wanted to talk with people that had had a transplant and not just any lung transplant patient but some one that had CF and that was around my age. The first thing I did was get on the web and read about lung transplant and what it detailed in terms of the process and outcome and survival rate after having one. Most the stuff you read is older stuff, trust me a single day makes a big difference interms of stats. And alot of the stuff sounds like its doom and gloom afterwards. At that time the survival rate for a person with a lung transplant was usually 5 years. So thats why i wanted to talk with real life people. I talked with many cfer's. I met poeple on the waiting list and ones that have been post transplant 10 years +. I wanted to make sure that I could take care of my family if I had it done. I wasn't afraid of the work that it would take after transplant in terms of the regimans and meds. So back to some of the new things i have to deal with. One is rejection, like i said above because of the rejection drugs that I have to take for life they will reek havic on my kidneys so thats one reason why i have a blood test every week to check the levels of the drugs in my system and kidney funtion. The longer a person lives with taking rejections drugs the greater the possibility of that person having to have a kidney transplant down the road. So thats why there is a very intense evaluation before the transplant to make sure every organ in your body can handle the surgery and the intense medication regimen.
Like every illness there are new drugs coming out all the time so tomorrow or some day there will be better drugs for transplant patients. Just like with CF when i was born i was not suppose to live past 10 but with each year and new drugs and new research the number kept increasing. Right now i think the medium age for some one to live with CF is 33 or 36. Just like not all CF patients are alike same with transplant patients and thats why I chose to talk with real people rather than read what its about in books or on the web. Its kinda funny before the transplant I never liked coffee I would drink it with a lot of added stuff on occasions and now I drink several cups a day still with added stuff in it though and also most of you know that I never talked about my CF it was something I kept private and now I cant shut up :-). Well I will post later and thanks for reading!
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