ILD Support Group - Lung Transplant Recipient's Journey Post Transplant

Fast recap from yesterday: Ken knew he was ready for a lung transplant when he was so ill, he didn’t care if he lived or died. He told us that we would know when it was time. He was on the waiting list for lung transplants for only 19 days. The surgery happened. Here is the rest of the story:

Ken awoke at 8:30AM and thought, goodness, that didn't take too long. Well, it was not the next morning but a full 24 hours later. He immediately realized that he could breathe. It was so unreal and probably his most poignant memory. He had to be taught to breath with his diaphragm again as we with lung diseases breathe with our chest and never deeply.

He was in ICU and on pain medications for 3-4 days then moved to the "step down" unit where the complications began. His body produced fluid around the lungs causing him to be short of breath. He was in the hospital for 20 days just to drain off this fluid. Later, he was hospitalized 2-3 times because of this plural infusion but there was no sign of rejection. The issue with all the fluid production made him discouraged at times.

The surgery incision was like a clamshell under each armpit then meeting below the ribs. The sternum is cut so that the ribs remain intact; some rise to go toward the neck while the others go the other direction. He said it reminded him of a hood of a car.

When the sternum is cut, the vagus nerve is severed. This nerve automatically knows when the lungs need to be cleared by coughing. With the nerve cut, coughing had to be a retaught and practiced though it hurts! He coughed so hard one day that he blew out a stitch in the sac around the lung. A quick surgery fixed that.

He said it took a month post-transplant to begin to feel normal, six weeks before he could drive and four months before he was allowed back to pulmonary rehab.

The milestones are:

First 6 weeks he had to stay close to the hospital for doctor appointments twice a week and almost daily blood tests with random bronchoscopies. He had a doctor appointment and tests every three months.  After the first year, the appointments are at the 18-month mark then just every year afterwards unless a problem pops up.

Medication. He said that if he were to pay retail for them, they would cost about $90,000 per month. His insurance pays so he monthly co-payments run about $150.00 per month. The big three are Cellcept, Prednisone and Prograf, the latter one being the big anti rejection drug. The side effects are brutal and lots of other drugs are taken to address those problems.

The life of new lungs depends on the health of the recipient. Post transplant, 55% are alive after 5 years, 25% in 10 years and there are a few hearty souls 15-20 years out. And yes, they do re-transplants if the patient is well enough and meets all the other criteria.

He spoke about another woman who had her transplant around the same time and they became friends through the process. She loved to hike. The minute she was released, she walked in a forest and inhaled scedosporium, which compromised her lungs. She died. The first year survival rate is 88%.

Emotionally, he said he went through a bit of a tough times post transplant. He had shoulder pain from his arms being over his head for 6 hours and at times wondered why he actually went through with the transplants. He felt unworthy of new lungs and thought maybe they should have gone to someone younger. He felt awful that someone had to die in order for him to live. But, he settled it all and is checking things off his bucket list. Contact with the donor family really helped him. He also said that looking back, he would do it again in a minute.

Thought out the process, he had the total support of his partner, parents and especially his brother who was a colon/rectal cancer survivor.

And the big news? He is back to work.

He left us with this: Lung transplants are not a cure. They are a treatment that must be monitored the rest of your life.