My CF Climb Story
Mary Had a Lung Transplant
I still have trouble saying that out loud, or even typing it - "Mary had a lung transplant"... It still seems so unreal, but it happened. Those of you that know Mar know that as of the beginning of May of last year she was in pretty decent health. She was running several miles a day a few times a week, had run a 5k just a few months before, had just started the new drug Symdeko, and had even had her best PFTs in months at her clinic appointment in the beginning of that May. We thought maybe the new drug was setting us up for at least stability after a rough 18 months.
But CF had other plans. A week or so after her positive clinic visit, she started to feel sick. She went on home IVs for what we thought was going to be a "normal" exacerbation. A couple days later, May 20th, she still felt worse, so we took her to the ER at Hahnemann for what we thought was going to be a "normal" hospitalization. Within a few days, breathing became so difficult for Mar that they put her on a Bi-Pap machine - a full face mask that's supposed to help with positive and negative air pressure. I don't know that either of us yet realized how serious this episode was getting or how quickly. She sent me a picture one night of her in the Bi-pap mask... the image haunts me to this day.
Things kept accelerating. A week later they had to intubate her. A few days later, while I was spending my first few hours at home in several days, her Dr. called me with an update. He said "This is it Erik. This is as far as her lungs will take her. We need to evaluate her for transplant. We're working on transferring her to Penn". It was always in the back of our minds. We knew transplant was the CF end game. But it wasn’t supposed to be now. It wasn't supposed to happen with no warning.
On May 30th they performed a tracheotomy to help stabilize Mar on the ventilator. At this point they had her in a medically induced coma so that she wouldn't fight the vent while it was breathing for her. The evening of May 30th she was transferred to Penn to start the lung transplant evaluation process. The next few days were a whirlwind of tests, questions, talking to drs, being terrified. On Thursdays all of the transplant team gets together to discuss pending cases, including Mar's. After the meeting, the CF transplant Dr came to us and said he had good news. Mar was approved for transplant and would be officially listed the next day. It was good news that she was listed, but at the same time seemed to be the final slamming of the door on any faint chance we might have imagined existed that we would get through this without a transplant.
Mary was listed for transplant the next day. She was listed at/near the top of the list for the region - meaning she was probably first in line, but also bringing home the point of just how sick she was. She was close to dying.
Less than 24 hours later, at 7:30am on Saturday June 10th, the Dr came in and told us they may have already found a match. Late Saturday night they took Mar for overnight surgery. As they wheeled her down the hallway to go to the OR, Mary's parents and I watched, and waved, and tried to smile to reassure her. She smiled back and gave us a thumbs up - to calm us down and because she was more prepared for this than any of us were.
Early Sunday morning the surgeon came to the waiting room, where we had "slept" as best we could, and told us the surgery was a success.
I will fast forward through the months of inpatient recovery and rehab. There were - and will be - lots of bumps along the way. Mar was inpatient for 68 days. She went through months of rehab. She had to learn to walk again. In January she had a major complication and was back on a ventilator for a few days. She’s had all kinds of ups and downs. Oh yeah, and then she was diagnosed with a type of cancer that can happen in transplant patients.
But Mar is alive. She is back home with me, and our cats and rabbits. She is back to work. She’s running again (up to 6 miles!). In October we are going on a vacation to Utah where we will go HIKING. She is kicking ass.
Without the hard work and dedication of the clinical staff, the support of our friends and family, the donations that support the research and science that make it all possible, and of course the selfless decision of Mary's donor and their family, Mar would not be alive today.
This is our story. One of tens of thousands. Please help us make this the most successful Stair Climb ever. Donate. Sign up. Raise even more money. Climb with me. Because Mary had a lung transplant.