Keith, I'm sorry to hear that you are nearing the transplant stage, but happy that you came here for advice. There are many people who frequent the boards who have gone through this before.
So...my answers to your questions below!
What can I expect prop-oration; A general over view of the screening possesses.
My transplant screening was three days of non-stop tests. Various blood tests, a cardiac catheter, CT Scan of the chest, PFTs, etc. They test you for everything under the sun. After you go through the testing, your case is compiled with the team and basically goes to the transplant board meeting. They review your results and then decide if you are a good candidate for transplant.
Post op recovery; time spent in hospital, physical therapy, extra.
Everyone is different when it comes to this question. I was in the hospital for 9 days after my transplant. I then was able to go home and live in an apartment fairly close to my center. I had doctor appointments on Tuesdays and Thursdays (blood work, PFTS, doc visit, etc.) and rehab on Monday, Wednesday, and Friday. Recovery is literally a full time job! You will need help from family members afterwards to do certain things that might be hard as first. As the days went in, my doctor appointments became less frequent. I was encouraged to excercise often and get blood work every 6 weeks. Currently, I'm 6+ years out of my transplant. I see my doctors once every three months (as long as I'm not sick) and still get blood work every 6 to 8 weeks.
Daily work/chores on the new lungs.
There is not much daily work that needs to be done. I take medicine and 9 AM and 9 PM. I care for my blood sugar from my diabetes. I exercise 4 to 6 days a week, depending on what I have going on. I walk to work every day so this also helps as I am never sedentary. I would say, singlehandedly, exercise is the absolute most important part of your care post-transplant (aside from taking your meds). This will determine your long term success with your transplant.
Potential side effects from, the entire ordeal.
Diabetes was the major side effect that I experienced and still have 6 years later. In the beginning, the tips of my fingers were numb, I had trouble sleeping, and I had moon face from the predinisone (and prednisone stomach). Besides the diabetes, and the occassional sleepless night, I really do not notice any side effects at all. Again for this one, you will get different experiences from everyone. Everyone's bodies react differently to medications.
What kind of quality of life can I expect afterwords?
My quality of life is absolutely 100 percent amazing. I have been very lucky with my transplant and I find the entire experience very humbling. I work full time and live in the best city in the world. I am able to keep up with other people my age and do what I please. I can travel. Ski. love. Swim. Run. Jump. Skip. Laugh. And do this all without coughing!!
With that being said, transplant does have the same "roller coaster" feeling that CF does. I have run into various issues over the last 6 years that have to be dealt with immediately when they arise. One day I am fine and the next day I have something wrong that needs to be addressed. Some people may argue that you are trading one set of problems for another. In a sense that is true, however, you are getting a much better quality of life if all goes well. If I kept my old lungs and didn't go through with my transplant, I wouldn't have been trading a set of problems...I would have one big problem...I wouldn't be alive!!
All in all, this is a very manageable life and one that I enjoy so much more than I ever could have imagined.
