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Post-transplant Bumps in the Road and Rewards: Part 1

Note:   Readers should always consult their physicians before taking any action (or inaction) which may affect their health or involve decision making.

“I am alive! I am here to enjoy and participate in my children’s lives.
I am a walking testimonial for overcoming adversary conditions both with doctors and with my own health.”

“I have a chance now to better utilize the life I have.
“I am able to provide some guidance, advise and an ear to others facing similar situations.”

“I would have the transplant again in a minute if I needed to. It was worth any amount of anything I had to do to be able to actually breath again!”

“I would do anything the doctors told me to do for this second chance at life.”

“Gosh . . . for those who are now suffering I say . . . go for it!”

“I had been attached to an O2 tank for nearly ten years. I think I aged 30 years in that time. Now I feel like I’m 25 all over again!”

“The good things (two years post):
     1. To be able to BREATHE again
     2. To be ALIVE
     3. To not worry about O2
     4. To be able to go to school.”

“Pre-transplant my FEV1 was 0.4 of a litre. Now I’m blowing 4.65 litres and it’s still improving.” (1 year post)

“I am still in awe of actually being able to breathe and do things on my own again.”  : )

“I’m just amazed that I’ve gone from 18% FEV1 to 67%! I guess it’s worth it!”

“Now I don’t have to shave my legs as often!”

“My complexion is great. I now have soft skin.”

“I now enjoy doing house work, I could not do it before transplant.”

“I can go shopping without any help!”

“I Have My Life Back!”

“I would do this again in a second; thanking God daily for the chance I have to be with my family and able to do all the things we are meant to do!” (5 years post)

“On the other hand, I am still feeling great and living a somewhat normal life. I exercise every day, golf, and keep up with the housework. My daughter, who was 2 when I was transplanted, is now 12 and I am able to take her to her various activities and help her with her schooling.” (10 years post)

“I would encourage anyone who is looking into transplant, to do so right away, and go in with a positive attitude.”

“I think the best part of my life since transplant is the fact that I can get air to my extremities, especially my toes! I was able to take a huge deep breath and feel it go through my body.” (5 years post)

“At the time of my transplant, my son was four. Up until the transplant, [name] could run, hide and take to the stairs to escape me. Normal boy behavior, BUT, after the day of miracles, I could catch the imp! You should have seen his face the day when I came up the steps after him, two at a time. Revenge!!!!”

“The pluses, however, are what you look for after. I was able to see my daughter (now 11 ½) grow into a beautiful young lady. I have enjoyed every minute of my 8 years and I’m still going pretty good.” (8 years post)

“What better gift to have then the gift of a new life!!!!!!”

Hi people! I wanted you all to know how absolutely incredible I have been doing! I can hardly believe it myself. I’m blowing a consistent 87% FEV1 on the spirometer (and getting better the more I do) blood pressure, temp, weight are all stable. I walk the dogs uphill and back :-) twice a day. . . . Yesterday I used an electric hedge trimmer on this fancy poodle tree for about an hour and a half!!!! Like I said, I can’t even believe it myself! I’m cruising up and down the long hallway singing and dancing (LITERALLY).  I’ve never felt so happy and complete in my entire life! and yes I’m being careful. I won’t go back to the treadmill ’til next week! ;-)  I’m using little 5 lb. handweights for shoulder rolls. I just love walking!!!

Everything is so alive and wonderful!! and then there is my boy, my heart . . . he is beside himself. It makes me almost cry everytime I think about what he has gone through with me and now by God’s miracle, he has a dad that he has never seen before!! There is so much to do!!!! and I am definitely getting stronger every day. I am so glad that I hit the treadmill so consistently before transplant, that really made a huge difference!! PLEASE pay attention to that if you are waiting . . . there is so much to say, and I’m sure I will forget most of it. :-)

I’m looking forward to getting rid of this prednisone belly. I’ve never had a gut before and it’s driving me nuts. They have lowered my pred twice so far and next week plan to lower it again. No sign of rejection. I did have the surgrery induced atrilfibulation (sp.) for a few days but am on beta blockers and things are steady freddy now. That is fully expected to go away also. I myself don’t expect a thing. I’m just doing what I’m supposed to do as hard as I can, and following orders. Can’t wait to go bike riding with Jr.!!

My whole life is 100% different. Things I had just forgotten about and assumed were gone forever are now possible. I know I am extremely fortunate, I haven’t had the terrible complications. My numbers are spectacular, I am having a blast without my tank and hose (ball and chain).  It’s so great to grab the groceries before Jr. can and leave him with nothing to carry! :-) He has been a trooper for the last five years without complaining at all. I am so lucky in so many ways.  I really want to do something worthwile with my life now. I could care less how I make a living (as long as it’s not unhealthy). I have a real drive to help others, be a great father, and just enjoy this gift. That’s the only way I can help looking at it, a gift and a miracle. Too many things went right at just the right time . . . but I’m going to do whatever necessary to take the best possible care of these lungs.

As for the pain, . . . I prefer painkillers . . . personal preference, I guess.  I’ve got it dialed in pretty accurately, so I’m plenty sharp and the pain is not bothering me. That is important. It’s not really about being comfortable as much as feeling like getting up and moving and being  able to cough when you need to. So I’m at a happy medium.

I can’t seem to slow down. There is so much to do. Just to be able to walk fast down the hallway is a thrill in itself everytime. But I’m working on it. I know my body needs some of that energy for healing. The actual incision looks like a little scratch that’s almost all healed. It’s amazing what they can do with the invisible stitch now. I had a little problem sleeping for the first two weeks, but that is getting better. As for all the pills, just pay attention, and it’s really no big deal at all. Not even a consideration when you compare the tradeoff! :-) Like I said, after only waiting four weeks with a beeper, and then getting a great pair of lungs, I can’t help but wonder if it’s really happened!! :-) I really feel stunned but I know it is a miracle. Yes, straight from the Creator and I thank him most of all!!!! Well I have to get out in the fresh air, take a walk. Thanks again everyone for your support!!!!!!!!! I will be saving the cards and emails and re-reading them from time to time.

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Updated May 24, 2005