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Pre-transplant immunosupression therapy

PostPosted: Thu Apr 20, 2017 6:20 am
by freddyy
Hi, good news!
Having lived 4 years with kidney failure and now being at "end-stage" (< 10 eGFR), it looks like I will be able to evade dialysis. My brother has been given the OK to donate his kidney to me!

Just one problem though, his blood type is A and mine is O. My doctor said that it will not be a big problem though, since we have some advanced medicines available to take care of this.

My doctor mentioned Mabthera treatments, as well as possibly Thymoglobulin induction.

Anyone have any experience going through these pre-transplant therpaies? Did you get admitted to hospital for the treatments, how long did it take, did you have to take any special precautions during this time, etc?

I guess I will find out from my surgeon once we have an appointment at the transplant center, but it's hard to get any information before that. Would love to hear your stories (if anyone has been through something like this).

Regards,
Freddy

Re: Pre-transplant immunosupression therapy

PostPosted: Tue May 02, 2017 6:52 am
by paul_in_toks
Hi there,

I'm going through the same thing (I think!). I haven't needed dialysis and I'm going to have my incompatible transplant on June 29th, donated by my mother in law. So, I'm also interested in this stuff. I need to have 1-2 weeks plasmapheresis treatment before the op and I'll be in hospital for that. Does anyone have experience of plasmapheresis?

Cheers,

Paul

Re: Pre-transplant immunosupression therapy

PostPosted: Tue May 02, 2017 9:00 am
by freddyy
Paul, thanks for your reply. Good to hear that you already have a date for the transplant! Must be exciting (and nerve-wrecking) to have a date to countdown to.

I'm still waiting for an appointment with my surgeon-to-be to fill me in with details and book a date for transplant.

Will get back with details when I find out more about this plasmapheresis. :)

Re: Pre-transplant immunosupression therapy

PostPosted: Tue May 16, 2017 7:29 am
by freddyy
So I visited my surgeon and transplant coordinator nurse yesterday to get information about my upcoming ABO incompatible transplant. Seems my cross tests and titres between me and my brother were much better second time around, and doctor seems happy with all results. Titre values were now 8:32, whatever that means. :D

Got a time booked for transplant, 12th October.

Also got some information about what happens since we have incompatible blood groups, in case anyone is interested.
- One month before transplant I will be admitted to hospital and (slowly) be administered a transfusion of Mabthera which will slow the production of antibodies. Will need to stay a while at hospital to check for allergic reactions that might happen. Before this test they will take a final blood test from me and my brother to make a cross test, and check that no new antibodies have developed.
- Ten days before the transplant I will start eating immunosuppresion medication (at home). And try to avoid getting infections. :)
- Five days before transplant I will be admitted to hospital. At this time I will be connected to a dialysis machine 3 or 4 times (depending on results) and there my blood will be treated with something called Glycosorb, which specifically targets the blood group antibodies and leave the other antibodies alone.
- After surgery they expect me to need about 10 days stay at hospital if everything goes right.

Doctor says I will need somewhat higher doses of immunosuppressors due to ABO incompatibility, but it should taper off quite a bit after the first six months.

Plasmapheresis should not be needed according to doctor.

Re: Pre-transplant immunosupression therapy

PostPosted: Wed May 17, 2017 12:35 pm
by Dixie1
All sounds very promising Freddy. :) Good luck!

Re: Pre-transplant immunosupression therapy

PostPosted: Thu May 18, 2017 10:51 am
by Tibbs
I had 15 rounds of plasmapheresis post-transplant to fix some rejection issues I was having.

It's pretty straight forward. They'll probably put a line into you - I had a line into my groin to start off with, which was rather uncomfortable going in, but was fine after. I then upgraded to a Tesio line, which was much better as it's sealed and I could go home between treatments.

Essentially, they lie you on a bed, pump you full of antihistamines (which made me sleep) to minimise allergic reactions and then spin your blood and replace the platelets with either FFP (Fresh-Frozen Plasma) or Albumin. FFP is still fridge cold when it goes in, so they wrap you in blankets and give you a warm-air filled plastic blanket to maintain your body heat. With Albumin, you don't need it, but it's still nice!

They start it off slowly, my first courses took about 3 hours to do. After 5 or so they started to speed up and my last courses were done in just over an hour.

Take a good book, headphones and some PJs. You don't need to do anything and I think it's way easier then dialysis looks.

Re: Pre-transplant immunosupression therapy

PostPosted: Sun Jun 25, 2017 3:14 pm
by paul_in_toks
Hi guys, so I'm staying in the hospital now doing my plasmapheresis. I arrived here on Thursday and transplant will be this coming Thursday. I've done two rounds of plasmapheresis, and has been mentioned, it's pretty straight forward. 3 hours of painless lying down each time. My final round will be tomorrow. I've had it every second day so the days I don't have it have been so boring but I gotta stay in hospital because I have the catheter in my neck, which is a bit annoying but doesn't hurt now. Inserting the catheter was a bit painful, what with the stitches. I seem to have a high temperature, always above 37c but I feel ok.

Re: Pre-transplant immunosupression therapy

PostPosted: Sun Jun 25, 2017 6:24 pm
by freddyy
Good to hear from you Paul. I'm glad the treatment is painless and going well so far. If one of the biggest concerns is being bored, thats a good sign :).

Keeping fingers crossed for your transplant this Thursday!

Re: Pre-transplant immunosupression therapy

PostPosted: Mon Jun 26, 2017 5:21 am
by paul_in_toks
Thanks Freddyy! Last plasmapheresis is just finished. Just waiting now. I'll update when I can!