And now I wait...: My nephrologist... - Kidney Transplant

Kidney Transplant
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And now I wait...

Jayhawker
Jayhawker
21 Replies

My nephrologist referred me for transplant eligibility testing last Jine. The transplant center pulled me in for the first appointment on July 31st. I spent the day at the center that day. I had a few hours of patient education, met with s financial coordinator, met wit a transplant nephrologist, and met with the transplant nurse coordinator. A number of labs were ordered as well as various cardiac tests.

I completed all the ordered tests by mid-Sept. I had another appointment on Sept 24th. That appointment included a visit with a social worker, a renal dietician, and a transplant surgeon. I was told I needed one more test, a colonoscopy. I had that done on Friday, Oct 18. No polyps.

My testing has all come back in with no problems. I’m learned on Sept 24th that the cardiologist has cleared me for the transplant as far as my cardiac health goes. But I haven’t heard the official word from the transplant center yet.

So now I wait... I’m hoping this won’t go on too much longer. Anyway, any suggestions for how I can past the time while waiting?

Jayhawker

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Dara3351

It’s a process.. I am assuming the transplant team goes through various meetings on all candidates each month. It will happen...

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marcyc
marcycNKF Peer Mentor

Prepare for surgery as if you were in training for the big game. Do whatever exercise you can, walk, walk, walk. Eat healthy and learn about post transplant care. If you are approved and you have a living donor things could move quickly (months). If waiting for a deceased donor could be years. Find a living donor, start now. Look at National Kidney Foundation web site for useful information. Best of luck.

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WYOAnne
WYOAnneNKF Ambassador

I found that the average wait time to find out whether you are on the list or not is 6 weeks from the last test. So, you may be waiting a while longer. Then once you find out, you have the LONG WAIT!

You are probably already doing everything you can. Keep in shape by walking as often during the week as you can. You are already involved in your work and that helps.

The wait for a deceased donor was much shorter in 1999, when I was on the list, but we were planning a trip when I GOT THE CALL.

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Jayhawker
Jayhawker
in reply to WYOAnne

Well, this is clearly going to take some major time. This particular transplant center hasn't been terribly good with the communication part of their services. So, I'm going to need to just hunker down to wait this out; I haven't really got any choice.

I've had a voice mail message from my regular nephrologist's office asking if I've heard anything about my eligibility yet. So, I'm not the only one hoping to hear soon. Nevertheless, based on what you've shared it looks like I won't hear anything until sometime after Thanksgiving at the earliest.

In the meantime, I'll try to set some other goals for myself and focus on those. And, yes, thank goodness I'm still working. That does tend to help me not to obsess about my CKD too much. Plus we'll soon start college basketball season. That really helps me pass the time. I literally plan my weekends around who is playing whom when.

Jayhawker

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WYOAnne
WYOAnneNKF Ambassador
in reply to Jayhawker

If it were me, I would put a call in to them the end of this week. It will be November 1st..... Who knows, maybe they haven't sent out your letter yet!

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ILMA54

I went for my tests on September 17/last year, and I heard by the end of August. At rhe facility I am dealing with, they meet every Monday to discuss cases, so that likely helped. Part of my wait was due to some follow up tests they ordered due to clotting issues I have.

I understand the waiting is hard. I was back in Manhattan this weekend to see my dad and my cousin, who had been tested as a potential donor. Turns out we were a good match, and he made it all the way to the end before they rejected him for not having ample GFR to be a candidate. Up until he told me that, I was content, but getting close and then being turned down has been hard.

Good luck on Saturday. Should be a good game

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Jayhawker
Jayhawker
in reply to ILMA54

I’m so sorry to hear about your living donor testing situation. I’m sure that had to be hard. Are you planning to look for a living donor outside your family members at this point?

My neighbors, and good friends, are strong K State fans. So we typically get together on game days where KU and K State play one another. I’m expecting we’ll again be watching K State take the game on Saturday. But basketball is right around the corner; although, this year is going to be pretty rough for KU basketball with the NCAA investigation ongoing.

But I actually follow several college basketball teams throughout the season. So once basketball begins I’ll actually likely find I am actively occupied with work and basketball to get me through yet another winter...

Jayhawker

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kristisparks

call and follow up we had to all the time. Assume u already have a donor. wishing u a successful surgery

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Auralov

The team usually meets and decides who made it to to the transplant list. They will call you and then send you a letter. You can also call your coordinator.

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smmahone

See if you can find a donor....I did and it is much easier process and better results overall

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Drdetroit

After all my testing, I was on dialysis for 2&1/2 yrs. Some of the wait depends on the match of blood type & anti-bodies. I kept working for that time, 40-50 hrs a week & doing dialysis for 30 hrs a week as I did nighttime for 8hrs a nite plus 2 hrs traveltime round trip. I was told that 8hrs is easier on your heart' I just tried to be active & busy. I got a Call after 2yrs & I was on the gurnee ready for the OR, when they told me the donor [deceased] kidney was unacceptable. I was devastated, but waited 6 more months for the next donor. I am now 7&1/2 years post transplant. Good luck & hang in there

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Jayhawker
Jayhawker
in reply to Drdetroit

Thanks for sharing your story.... and so good to hear how well you’re doing now!

Jayhawker

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Jayhawker

An update:

I got a call from Angela, my transplant coordinator, this afternoon. She is still awaiting my PAP Smear data. I gave her the doctor’s name and contact number.

She said she was going to try to get my data to the transplant team for review and discussion next week Wednesday. So, if she does that, I’m hoping to hear something final within 2-3 weeks.

Jayhawker

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ILMA54

That's great news!

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BKP1
BKP1
in reply to Hidden

my dad is looking for donor. he's been waiting for almost 3yrs.

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Dara3351

Nowadays people with Hep C can donate their kidney because it can be cured. I saw a newspaper article about an elderly gentleman who received a Hep C Kidney, was treated and he was cured. I met with my transplant team and also met with a liver specialist and I signed a waiver to receive a kidney with Hep C and received one within two weeks. I did my 12 week treatment with Mavyret and I no longer show any signs of Hep C. I am now at 9 months post transplant! Hang in there, it’s just a waiting game, stay positive.

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Jayhawker
Jayhawker
in reply to Dara3351

Yes, I have heard about that option with Hep C kidneys. Of course right now I’m still in a holding pattern waiting to hear if they will qualify me for a transplant.

As I wait I’m contemplating options like that you have described. I’d love to hear more about your experiences receiving your living donor kidney. For instance, did you run into any issues taking the medication to deal with HEP C? What potential long term problems do you anticipate, if any, once the HEP C is resolved? Can it be totally resolved?

Please send me a PM to share more about your transplant experiences if you wish.

Jayhawker

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Dara3351
Dara3351
in reply to Jayhawker

My kidney was from a deceased donor. I took Mavyret for 12 weeks. 3 pills every evening... testing has been done and I show no sign of Hep C.

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Jayhawker
Jayhawker
in reply to Dara3351

Thanks for this information... I’m still waiting to hear the final decision from the transplant center. I’m really trying to stay guardedly optimistic as I wait this final step out...

This is truly a major emotional roller coaster! I just keep telling myself that if they deny me I haven’t lost any ground, really. I’ll just know definitively that transplant is not a treatment option for me. I’ll then need to move past all of this and continue planning to start PD dialysis hoping that I’ll have a good experience with that.

Jayhawker

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