Reflections on being at Duke Hospital for the first time in 9 years

jon-nyc · 5 Jul 2025, 12:47

‘Regular’ treatment besides the meds are frequent visits, they started quarterly then went to every six months while I was more stable and are now roughly three times a year since my lung function has been sliding a bit (more in that in a minute).

Typical visit is labs, chest xray, pulmonary function tests (PFTs), and a chat with the doctor. At home I do monthly labs at a local quest or Labcorp and quarterly infusions of Immunoglobulin g (IVIg). That’s standard.

The monthly labs give them feedback about tacrolimus levels (the main immunosuppressant) which they use to manage my dosing; kidney function, (the meds destroy your kidneys over time, I’ve been stable on the edge between stage 2-3 chronic kidney disease [CKD] for years); and things like white blood cell count (we want that low but not too low). Also in my particular case we monitor liver enzymes since my underlying disease (Alpha-1 Antitrypsin Deficiency AATD) can damage the liver.

When they wheeled me into OR 9 years ago I was at 14% lung function. I plateaued post transplant at 106% (it can be over 100 since it’s a comparison to median value for my age, height, and sex). It stayed over 100% until I got Covid the first time in 2023, after which it dropped and stabilized, as expected. Last fall I got Covid again and walking pneumonia at the same time. It dropped, never stabilized, and kept dropping. They decided that could be early chronic rejection and decided to give me this one-off treatment to shock the hell out of my immune system to hopefully stop it.

The treatment is called RatG, which stands for Rabbit Anti-Thymocyte Globulin.

They actually put human T-cells into rabbits, the rabbits immune system recognizes them as foreign, and make antibodies against them. They then harvest the antibodies and inject them into me. So I literally have rabbit-produced antibodies against human T-cells in my blood stream right now, actively killing my T-cells.

The reason I’m in the hospital is there’s a tiny chance I could have a bad reaction but that seems not to be in the cards.

89th

Wow thanks for typing that out, hopefully others learned something too. Amazing science… whether it’s the stupid meds to fight off my shingles earlier this year or even a recent infection in which an antibiotic stopped it quickly… or the 1000x more complex scenario you’re dealing with, it shows how humans can live so much longer as compared to 100+ years ago when these modern marvels weren’t in place.

Anyway, thanks for sharing.

taiwan_girl

@89th said in Reflections on being at Duke Hospital for the first time in 9 years:

it shows how humans can live so much longer as compared to 100+ years ago when these modern marvels weren’t in place.

Yup, and I am sure that people 100 years or so in the future will look back at medical in 2025 and laugh at how primitive it was.

blondie

Good luck with your treatment @jon-nyc .

jon-nyc · 5 Aug 2025, 22:29

I tolerated it so well they let me out right after my infusion finished rather than keeping me overnight just in case.

I did have a last minute incident. They took out the PICC line and wrapped it per protocol and gave me my discharge papers. As I was getting my things together to leave my room it suddenly started gushing blood. I put a towel on it, raised it, and called for help. They sorted me out and rewrapoed it but the floor looked like a crime scene. Mostly because it was wrapped so well a whole lot of blood was behind the plastic and when it finally burst a ton came out.

But I’m good and sitting in my hotel thinking about where to go for dinner.

Mik

Pro tip: Don't look for Bolognese.

jon-nyc

Ha

Mik

I really made a bunch of it. We've fed seven people, gave a quart to my neighbors and I froze two quarts of it today.

taiwan_girl

@jon-nyc said in Reflections on being at Duke Hospital for the first time in 9 years:

I tolerated it so well they let me out right after my infusion finished rather than keeping me overnight just in case.

That is awesome!!!

89th

Glad to hear, Jon

jon-nyc · 5 Sept 2025, 20:10

Yeah, though relatively small victory. The real test will be what happens to my lung function in the coming months.

But thanks all the same. I appreciated having a night as a real human rather than a patient.

Axtremus

Best of luck with staying healthy.

Mik

@jon-nyc said in Reflections on being at Duke Hospital for the first time in 9 years:

Yeah, though relatively small victory. The real test will be what happens to my lung function in the coming months.

But thanks all the same. I appreciated having a night as a real human rather than a patient.

I’ll bet. Even small issues like for me today are an interruption.