12:24pm
TIL that when you get critically ill your pituitary gland can freak the fuck out and throw massive amounts of TSH into your system. Which is fine (I guess) if you have a thyroid but since N does not, he came into the hospital with a TSH of 36 and it climbed as high as 51. So the docs gave him a bunch of synthroid (thyroid hormones) to get his T3 and T4 back to acceptable levels… but the pituitary takes time to settle, so his TSH still looks stupidly high.
Lessons learned:
- Pituitary glands are panicky little idiots
- Watch the T3 and T4 numbers in the hospital not the TSH
***
1:54pm
Looks like we’re going to be here at least another week.
God I miss my CF friends so much right now
One of my friends — Aubrie — she got a lung transplant at like 22 years old. She married her best friend. She died the following Christmas. You think you’ve finished mourning someone when 30 years have passed and then someone mentions the upcoming holidays while you’re sitting bedside and it all comes back like it was yesterday.
And it’s so so easy to get mad about it. Barbie would have loved all this tech. Robin would have laughed himself silly. Hal would have been his curmudgeonly self. And the tech wasn’t there. Trikafta wasn’t there. So they’re gone now and all of the old support groups have died off or gone away.
I think it’s lonelier when I know what kind of support I could have had than if I had never known any of them.
And yet without them we wouldn’t have gotten this far.
I wonder if Kim’s son is still alive. I wonder if Barb’s dad ever finished his giant hoard of toothpaste. I wonder how I can find them or even if they want to be found.
***
5:15pm
🤦🏻♀️ OF COURSE the active cf community moved to reddit. I’m an idiot.
***
7:08pm
Nathaniel is out of his colonoscopy which was *almost* a success. They were able to scope his sigmoid (bottom), descending (left), and transverse (top) colon sections, but his ascending (right) colon section was *still* filled with, well, crap, so they need him to stay on a liquid diet this weekend (but thankfully not another weekend of golytely — I hope) and then they’ll try imaging the ascending colon early next week.
Why is this important? Well, for one, if there’s something unusual going on where the small intestine meets the colon, it could explain the abdominal pain he’s been having. And for another, colon cancer would disqualify him for a liver transplant so they have to ensure that there’s no cancer in there before he can get approved and on the list. The doc who stopped by said that so far they haven’t found anything that would either cause the pain (👍🏻) or that is cancerous (👎🏻) so we’re in mostly good shape there.
I don’t think he’s going to be thrilled that he’s going on a liquid diet for the weekend but I do think he’ll like it better than another weekend of prep.
Plus they’ve decided that his weight has fallen far enough that they’re going to put him back on the tube feedings since he has the Dobhoff (nasal gastric) tube in anyway. That’s great news for him because it means he can sleep while he eats.
The team is watching Nathaniel closely right now because in the last three days his liver decided to tag in the kidneys for shenanigans. Credit to the doctors: they jumped on the problem immediately, because if the kidneys go bad too then Nathaniel would need to have both liver and kidneys donated and that’s much harder to find (and survive) than liver alone.
The team is also leaning heavily toward evaluating Nathaniel for transplant inpatient. Once again, both good and bad. Good because it gets it done. Bad because the hospital strongly prefers to evaluate when someone is outpatient because it shows that they’re strong enough to walk around, feed themselves, etc. and having to be evaluated inpatient generally means the patient is sicker than others and (ironically) not as good a candidate. Part of the challenge in evaluating for transplant is that the people most likely to survive a liver transplant are healthy — which means they don’t need a liver transplant — and the people least likely to survive are the ones who desperately need that liver.
The guidelines and evaluation process is, to my knowledge, relatively standardized across hospitals and HUP is the 8th best hospital for a liver transplant in America, so I’m confident that whatever decision they make will be based on sound data. Oh, and a “no” doesn’t *necessarily* mean “no forever”, it could just mean “you need to get stronger first”.
So if transplant eval happens next week then we will be inundated with not only questions and examinations from the various medical departments themselves, there will also be a financial evaluation, an evaluation of Nathaniel’s medical insurance, instructions for things I have to do, a need for us to update his living will (and mine while we’re at it), etc. etc. etc.
It’s going to be a very busy week.
Here’s Nat now! Later all.