← Return to Lung transplant: investigating the pros and cons of double transplant

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@zoeh I received a double ling transplant at Mayo Clinic in July 2016. The eval process is long but thorough as others have stated. The transplant centers are very cautious and want the best outcome for you they can accomplish. I am not having any issues with the anti rejection medications. The Drs. keep adjusting them post transplant until they find the right balance. 81/2 months out from transplant and they just adjusted my prednisone again yesterday.

My journey started with a diagnosis of Idiopathic Pulmonary Fibrous in April 2013 and being placed on the transplant list in Dec 2014. The battery of tests before being placed on the list took 6 days. It seemed like a lot at the time but it went pretty fast and was mostly painless, but tiring. My health remained pretty good and I continued to work until May of 2016 when my oxygen needs got to high to stay outpatient anymore. In the hospital they kept me doing pulmonary rehab (treadmill and recumbent bike) up to the day before surgery. There was also exercise using elastic bands to keep the arms, legs and core muscles as strong as possible. On July 4th we received notice that lungs were available and on July 5th the surgery was performed. Recovery went well mainly because they had kept me physically active as possible before surgery and I had a great surgeon. I was discharged on July 13th and back to pulmonary rehab on July 14th. Had to stay near the transplant center for 90 days post transplant to continue rehab, blood tests, x-rays, consultations and other tests. It started out as daily blood tests, rehab and twice weekly consults. Then it starts to taper off and gets to be further between appointments. After 90 days they basically released me to go home and continue recovery. Returned to work part time in October and am basically back to full time now. I continue to exercise and do home monitoring of blood pressure and spirometry. My appointments are basically two to three months apart now because I have a bronchialmalcia, part of the bronchial tube collapsed where it attaches to the esophagus. This is fairly common in lung transplants as they can not connect the small veins in that area. They do bronchoscopies to monitor for rejection, knock on wood so far no signs of that. All in all it has been a great journey and we are so thankful for the donor. With out her there is a good chance I would not be here today. Stay strong, think positive and exercise as much as possible. Best of luck to you.

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Replies to "@zoeh I received a double ling transplant at Mayo Clinic in July 2016. The eval process..."

Thank you, @timfair, for coming to Connect with this firsthand account of your journey. And what a journey you've been on! I am going to tag @dthoodjr who inquired about this 4 days ago. I hope that he will see it and gain some idea of what lies ahead.

I am happy for you and your loved ones that you are doing well. You speak volumes to all of us transplant patients when you say, "Stay strong, think positive and exercise as much as possible".

Tim, I would like to welcome you to Connect, and I invite you to return to any of our discussions about transplant anytime you want. It is always my pleasure to meet and greet a fellow transplant recipient. May you continue to enjoy life as you move forward.

Thank you for sharing your transplant experience. Which location did you have your surgery at? Terri M.