I've put off writing this post because I don't want to think about Friday plus I don't want it to come across wrong. But I want my blog to chronicle this journey, the entire journey, with all its inevitable ups and downs-- Friday was definitely a down.
I've been flying under the radar for the first three weeks here. No doctors appointments at all: zip, zero, nada. It made me wonder more than once if any doctors at Duke realized I was here (or even cared I sometimes thought.) My lack of appointments has made my rehab sessions add up faster than usual however. I've already got 16 under my belt and only need 7 more to satisfy the minimal requirement before being listed. So that is a positive for sure. Well, I came in for a crash landing Friday morning.
At 8:00 a.m. I met with a new pulmonologist, Dr. Stephanie Norfolk. After a brief introduction, she got right down to business.
She was blunt. I failed to meet esophageal motility parameters set by the transplant team. If the medication I recently started didn't help my esophagus muscles move my food through better, I would be out of the program.
She saw my shock. I couldn't believe what I was hearing. Me, dropped from the transplant program for swallowing issues? WHAT??!! My deer-in-the-headlights look must have given her a clue that this was news to me. "Hasn't anyone told you this before now?" she asked. Something like, "Uh, No!" came out of my mouth.
She apologized for being blunt. "I am so sorry. If I had known no one had spoken to you about this problem before, I would have approached this conversation completely different." She took me by the hand as tears started to leak out of my eyes--that made me feel a bit better.
Then she was kind. She went on to explain that because my esophageal motility is 50% less than normal and going through the transplant slows motility even further (cut nerves and such) that if I were to go into surgery "as is" now, I would most likely come out with a feeding tube that I would never be able to get rid of. I would never be able to eat food again. Because that has happened to a few patients with motility like mine and a couple never even got to leave the hospital, the team no longer accepts patients like me. The quality of life post transplant is too low to justify the surgery.
So now I need a miracle. The medicine, Reglan (metoclopramide), has gnarly side effects which become more likely the longer a person is taking it. I had to suck up my courage just to take the first 1/2 dose. So far I have tolerated it well. I jump up to the full dose tomorrow. I will remain on it for 1 1/2 to 2 weeks before they repeat the esophageal manometry (EM) test I had during evaluation week. The doctor wants to make sure I'm on the Reglan long enough to get the full benefit of the drug. Let's just say the EM was not my favorite test experience. But I will do it again and pray that this medication works wonders and gives me a chance to move forward.
I also found out that I am negative for CMV, a virus 70-80% of the population tests positive for. Usually that is good news. However, since it is more likely I would receive donor lungs from someone who is already positive, my weakened immune system would be unable to fight it off. They do have a very expensive drug that I would have to take for the rest of my life to protect myself. Since I'm already asking for a miracle, I'm adding on the need for a CMV negative donor.
After talking to Dr. Norfolk, I spoke with a nutritionist. I need to put back on the weight I've lost since exercising so much. So bring on the extra food. Then I had an x-ray, blood gas draw, and a pulmonary function test (PFT).
My PFT only went down 1% from where it was in March. I am experiencing a miracle already by breathing so well, especially since I've been hospital-free since November. It is a tender mercy that I am grateful for. Rheid and I are staying positive and hope to hear good news soon.