Update from the VA Hospital—the news is sub-optimal
Or, in Jimmy Carter’s wonderful phrase after the hostage rescue mission to Iran ended in disaster, right now my lung transplant from 12/23 is an “incomplete success,” despite doing so well the first six weeks. As you may know, I was de-saturating on my oxygen levels, so they put me back on O2 on Tuesday, April 1. But on Tuesday, April 8, I de-saturated to 76% just walking 15 feet with O2 at 5 LPM (90% and above is normal), so they ordered me to the VA ER and stuck me back inside. I’ll be here through at least Monday, so no political blog posts until I’m out a few days and get organized. I will, alas have to delete hundreds of emails when I get to them, but will try to read personal messages. Please hold all other email, unless you just have time to waste.
The doctors are fairly grim. They have not given up, but it’s clear they think they are losing this war. The transplant management pulmonologist said that, by “Very bad luck, you have fallen into that 2% of cases where there is so much slough (sluff—dead cells) that it will be a challenge to fix.” This was the case with the lung transplant patient they lost three years ago. Sough is the result of the tissue not getting enough blood and dying, they don’t know why, how or where. The hope is that by debriding it, healthy tissue will grow. But in my case, I’m getting a lot of scar tissue and the slough is also in the small bronchial tubes, where it is hard to debride. And slough is the perfect breeding ground for infection—I have pneumonia again, so I'm on a ton of antibiotics. He also said there is no chance of getting another lung. In my age group, the prognosis would be very poor and it’s a question of allocation of scarce resources, due to lack of donors. So one to a customer. We make this one work, or….
The transplant coordinator said that, “No one is throwing in any towels, but given your decline over the past ten weeks, if you reach a point where you want to talk to the palliative care team about end-of-life options, we will set it up. We want to meet your needs. This doesn’t mean you are giving up, just that you can make decisions now and know the options if you reach a point where you need them.” This makes sense, little as I—or Bonnie—wanted to hear it.
On Friday, I had my surgical bronchoscopy. Dr. Maloney did aggressive debriding of the slough, took out the mucus-clogged stent and replaced it, sucked out the junk and ballooned it five times, three in the small bronchial tubes where the biggest problem is. He said there is also healthy tissue under some area where there was slough, so that was good. His plan is to do a clean-out bronch this next week and another surgical bronch the following week. At that time, he will take out the stent and we will see how the lung does without it. If well, we may get back on track. If not…. He doesn’t say this will fix my problem, but at least he is still in the fight and has a plan, for now.
I remain confident in my healthcare team, who are top notch down through CNAs. But there are no guarantees and some things are in the hands of God.
This is all I know at this time, so there’s no use everyone sending me questions. If I learn new info, I will post it. As always, I thank everyone for the support, good thoughts and prayers. I will continues to go forward.