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Organ Donation and Transplant: What is Your story?

Transplants | Last Active: 5 days ago | Replies (94)

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@windwalker

Hi there! Facing an organ transplant can be a scary proposition. I feel like anybody facing this kind of surgery faces a lot of fear. There is fear of not finding a match, or finding a match in time; fear of rejecting the organ, fear of the other side effects that come with anti-rejection meds, etc. Several years back; I was pre-qualified for a double lung transplant because my lung function tests showed that I was entering a danger level for lung failure. That was in 2016. I was able to divert the need for transplant then, but, have been in a slow decline since then, and Mayo feels like I need to get listed now. I will begin my journey on May 16 with two weeks of pre-qualifying tests to see if I am still a candidate for a transplant. Lung transplants are particularly more difficult than other solid organ transplants in that the new lungs get exposed to foreign elements when a person breathes in outside air. I have learned that I am HLA Class 1 and Class 2 positive, which means I am autoimmune and will more than likely be constantly rejecting the new lungs. These genes are rare, as is my blood type B+ which will make cross-matching extremely difficult if not impossible. Mayo still thinks I should go for it, but I am worried about my quality of life if I do. I have been in Pulmonary Rehab for several months now and it has helped me a lot with energy and shortness of breath. My present plan that I follow is to stay as fit as possible and keep a positive attitude. I keep a sunny disposition and do not dwell on what may lie ahead. Today, I am breathing ok, I can walk, I can still go shopping (or other places), walk my dogs a mile each day...... so, I will just enjoy this day and be grateful that I am at this level, at this time. That is my story; anyone else out there with HLA (Human Leukocyte Antigens) complications?

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Replies to "Hi there! Facing an organ transplant can be a scary proposition. I feel like anybody facing..."

You have a wonderful attitude and approach! I am a heart/lung recipient. I do not have HLA. But I was very active prior to my transplant and am happy to report that one year later I am busy, fit and loving life. 5 months after transplant I was back riding my horses and today I walk my dog 30-60 min daily (depending on the weather), lift weights and do yoga. Trying to keep yourself as fit as possible prior to transplant is a great approach. Just like any surgery, the more in shape you are going in, the better the recovery. I couldn’t walk much more than a very slow 10-15 min prior to transplant.

I’m not going to lie though, the first 2 months post transplant I had NO muscles and no strength or stamina. And I lost a LOT of weight. Apparently common for lung transplants as we all laughed in respiratory rehab that we were back at HS weights. But months 4 thru 9 I made significant progress.
Good luck to you! And celebrate the small victories every day. That helped me a lot. I even wrote them down in my journal at night so I could look back and appreciate how far I had come.
Jackie

@windwalker, how is the evaluation going? Will you go home for the weekend or do you stay at Mayo Clinic for the full 2-week evaluation process?