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Author Topic: Finally have transplant date  (Read 1342 times)
gilders
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« on: January 28, 2019, 09:34:42 AM »

I was initially told that I needed to start planning for dialysis or transplant over 3 years ago. It took a further year to get my first appointment with the transplant team. It's been a little over 2 years since I first met the transplant team and I've finally been given a date for transplant (my dad's the donor) - 5th March.

I'm very worried about the operation (I have multiple complications) and the risks involved in immunosuppression, but given my choices (dialysis, transplant, death), I'm happy that transplant is my best option.
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iolaire
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« Reply #1 on: January 28, 2019, 09:46:26 AM »

Congratulations!  I hope that all goes smoothly for you.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
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« Reply #2 on: January 28, 2019, 11:24:27 AM »

Congratulation to you, gilders and good luck and please keep us posted.
Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
gilders
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« Reply #3 on: February 08, 2019, 05:36:58 AM »

Grrrrr! :stressed;
After waiting 3 years for a transplant date, they have postponed it for a further 2 weeks (now March 19th).
The surgeons have decided that due to my increased risks (mostly from bleeding) they are doing the operation at the same time for me and my father. It was originally planned for my dad to go to theatre in the morning and for me to go around lunchtime. But as I am at increased risk of not being able to receive my dad's kidney, they want to begin by cutting me open and if all seems well, they will begin to operate on my dad. Therefore they need 2 operating theatres and 2 surgical teams and the soonest date is a further 2 weeks away.
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kristina
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« Reply #4 on: February 08, 2019, 10:13:23 AM »

Hello gilders,
I am so sorry for this further delay, it sounds like the ultimate frustration and I keep my fingers crossed for a good outcome for you and your father!
All the best wishes and I do hope that the frustration comes to an end soon and hopefully you receive your fathers kidney very soon!
All the best to you and your wonderful brave and loving father from Kristina. :grouphug;
P.S. Is your father donating his left or right kidney? And ...  is your bleeding due to Vasculitis?
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
gilders
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« Reply #5 on: February 08, 2019, 01:53:54 PM »

Hi Kristina,

Thank you for your kind words.

I do have vasculitis (Wegener's Granulomatosis), but my bleeding issue hasn't had a full diagnosis. They know that it is due to platelet dysfunction, but don't know why they become dysfunctional. They plan to give me platelets before the operation. If I create dysfunctional platelets, then this should overcome the problem. But if I actually create regular platelets and something in my body makes them dysfunctional, then I could have a major bleeding episode.

My kidney drs keep saying that it's quite likely I'll need a couple of sessions of dialysis just before the operation. I REALLY wanted to avoid this, but a 2 week delay makes it more likely.

I think my dad is donating his left kidney (my brain has been really "foggy" the last few months). They slightly prefer to transplant on to the recipients right side, but I have had multiple blood clots on that side, so they are putting it on the left.
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Cupcake
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a good year for Chevys

« Reply #6 on: February 09, 2019, 08:47:12 AM »

At least you will avoid that time in limbo day of procedure that I had. My donor had a small tumor near the kidney so they weren't confident the procedure would go ahead. But they (Barnes in St Louis) had me and my donor both come at 5AM; she went to OR at 7 and they removed her kidney and found just a small venous anomaly. But it took time for it to go to pathology and for me to get the go-ahead. I was on a gurney sitting in a corner of the pre-op room for hours. It was almost noon before I finally went off to the OR. I am very grateful to a surgical intern who wasn't scrubbed in and kept bouncing in and out with updates--they just started, her kidney is out!, specimen sent to path, path says its nothing--hooray!!

I wish they would have let me stay dressed and sit with my brother (donor's husband) in the surgical waiting room. But I got a great kidney and I'd do it again tomorrow!
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PD for 2 years then living donor transplant October 2018.
gilders
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« Reply #7 on: February 09, 2019, 10:31:39 AM »

Hi Cupcake,

I'm glad to hear everything went well once the new kidney got the green light and that you're still happy with the new kidney!

I'm most worried about bleeding post-transplant (from around 2 days later). When I've had serious bleeding issues, it's usually sometime (sometime days) after I've been stiched back up and sent home, or sent to the ward.
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justagirl2325
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« Reply #8 on: March 10, 2019, 11:44:47 AM »

I also donated my left kidney.  I was told that's the kidney of choice as it is the easiest to transplant (longer connection). 

My husband was transplanted on his left to, to save room for the pancreas transplant on the right, which he got 10 months later.  Good luck to you both.
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gilders
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« Reply #9 on: March 11, 2019, 08:33:27 AM »

I also donated my left kidney.  I was told that's the kidney of choice as it is the easiest to transplant (longer connection). 

My husband was transplanted on his left to, to save room for the pancreas transplant on the right, which he got 10 months later.  Good luck to you both.

We were told that in the UK they always remove the poorer performing kidney from the donor. I think that is only fair as it's still going to be a good kidney and seems almost cheeky leaving the donor with his/her poorer kidney after their generosity.
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