Lung transplant: investigating the pros and cons of double transplant

@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.

@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.

I have my initial appointment for lung transplant eval in April. Was told to be prepared for 2 weeks of testing and evaluation. What takes so long?

I have my initial appointment for lung transplant eval in April. Was told to be prepared for 2 weeks of testing and evaluation. What takes so long?

Hi there. I just turned 63 on Dec 13. Was told yesterday that I need to get listed for a transplant. I am in the same boat you are in. I was almost listed in 2016, but was put on the wait and see list. I am also at 29%. Living with a transplant is no picnic either. It is hard work to stave off infections, cancer, and organ rejection. I want to fight to stay on this earth as long as possible for my daughter. Are you being seen at Mayo?