Reflections on being at Duke Hospital for the first time in 9 years
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You have to order in advance to get the good stuff. I missed the window last night (I was going to order this) and got the default chicken and Mac and cheese with steam-tortured broccoli. And chocolate pudding.
In fairness the chicken was remarkably tender.
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Jon, so happy for you that things are going well.
Re: point #2. LOL
Last time I was in the States, I had a check up and in the waiting room, there were some chairs - not big enough for two people, but seemed too big for one person. Kind of like a chair and a half. I eventually realized that they were for people who were one and a half in size. -
So I had no reaction to the six hour infusion yesterday other than a sore lower back because hospital beds kill me. I mean no systemic reaction like chills, fever, headache. And they say if people have a reaction it’s on the first and largest dose.
So the next two doses, which are lower, shouldn’t be a problem unless my platelet count or T-cell count gets too low in which case they’ll do half doses.
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Jon I was absent here for the years where the main transplant action happened. Remind me if you want, what are the treatment protocols, such as this one, now for you. Annual infusion? I am very ignorant to the whole process. My FIL had a kidney transplant a few years ago so I’m familiar with the meds he has to take and other lifestyle restrictions, such as being immunocompromised so he no longer can eat his steak “still moo’ing” the way he liked it before.
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‘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.
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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.
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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.
@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.
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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.
You were warned.
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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.
@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!!!
