Going for another transplant evaluation

[Jill D.]

In the last six weeks, the GFR of my transplanted kidney has gone from 36 to as low as 20, and my creatinine has gone from 1.6 to as high as 2.7. My labs from last week had my GFR at 23 and creatinine at 2.3, so at least things seemed to have stabilized for now, but I am going out to Mayo Clinic the week of May 17 to have a new transplant evaluation. I figured why wait. I have one friend who is really interested in being tested as a donor and two sisters-in-law who have expressed an interest.
This has been so difficult. When my native kidneys failed, it was a very slow process - 16 years from the time I was diagnosed to the time I started dialysis - so the fatigue, nausea, acidosis and generally feeling like crap came along gradually and was manageable. This time everything hit at once, within about two weeks time, and has included continuous edema in my feet, ankles, legs and abdomen. I had only slight edema on occasion the first time around. I have no appetite and am exhausted. It really sucks, as the majority of you on this site know.
Anyway, I will be looking at another positive-crossmatch transplant at Mayo Clinic if and when I find a donor. I am very interested in how Dea and Beth's mom are doing with their transplants as they are part of a study group using a new, promising drug.
For those new to this sight, the journey of my first transplant can be found at the thread http://ihatedialysis.com/forum/index.php?topic=1319.0

[okarol]

Jill,
You know I am sad that you're experiencing this but feel confident that you will be able to find another kidney. Best wishes to you - lots of HUGS too!     

[Wattle]

Oh Jill I am so sorry you have to go through it all again so soon. But it is wonderful that you have a few possible donors. Hopefully you will remain stable through the process and move straight to a new kidney. Thinking of you. Hugs   

[monrein]

Jill, I'm thinking of you as you go through this and hope that the second time around process goes as smoothly as possible.  We will be following your journey with interest and of course, support.

[Rerun]

Jill, I am so sorry.  I didn't know you were having problems.  I was hoping you would be off dialysis for a long time.  AND maybe you will if you get another transplant soon.

Did they say why?  Not that they ever know or if they do they won't say.

                       

[willieandwinnie]

  I'll be thinking about you Jill. 

[Beth36]

Jill...I am so sorry to hear about your kidney transplant not going well...ugh...I know you are beyond frustrated. You should talk to Dr. Gloor about the treatment my mom had. It has been a miracle for us so far. She is doing great. Her creatinine has stayed at or below 1 for a year and she feels great. It's been a year and she is doing well. Her labs have been really good and she's only doing monthly blood draws, so she has some freedom. There were a few bumps in the beginning but they are long behind us and she is healthy. That's all that matters to us. They have done biopsies and all clear..she'll have one next month and we'll see....I want to hear how it goes at Mayo for you. I've been thinking of you and I hope it all works out!!!!
 

Beth

[Sluff]

Really sorry to hear this Jill, you were doing so good when we saw you in Vegas. Your spirits seem to be better than expected and I do wish the best for you. Please keep us informed and know that we are here for you.

[paris]

Sending you my love, Jill.  You know how much I hate that you are going through this.  I'll keep saying lots of prayers for the evaluation, the donors and you.   

[kellyt]

 

[lola]

 

[Sunny]

Jill, I hope everything will work out for you. It is important that you start feeling better soon.

[Romona]

  I will be tinking about you.

[Jill D.]

Thank you, everyone, for your love and support. Beth, I spoke with Dr. Gloor about the drug they used on your mom and I am soooo happy to hear she is doing so well! Please keep us posted as these things give all of us hope!
Dr. Gloor did say that they would do things differently the next time around, but he wasn't specific because they are always learning new things and I'm guessing the exact plan will depend on the latest research at the time.
Rerun, I don't think they know exactly what happened. I'm guessing the transplant glomeralopathy somehow intensified. I plan on asking when I go out next week.

[jbeany]

That stinks, Jill!  I hope things work out for you.

 

[Jill D.]

Transplant Evaluation Day 1:
7:00 - picked up itinerary, had labs drawn
8:45 - ultrasound of my vascular system to determine where the next kidney will go (find out later in the day that it will go on my left side; my first transplant will remain on my right side)
11:00 - Met with financial person
1:30 - chest x-ray
2:30 - met with nurse to review my current meds
3:00 - met with my doctor, Dr. Gloor, to discuss my current health situation. To his great surprise (and mine as well) my labs show that the amount of protein in my urine has dropped huge - about 1/10 of what it had been - even though there has not been a drop of protein levels in my blood. This is very strange as I have been spilling large amounts of protein for the last 18 months or so. Not sure what it means, but it's a good thing.
Also, he feels that the swelling may be from my meds, Minoxidil in particular, and made some changes - even eliminated some "non-essential" meds since I am on so much medication.
4:15 - met with my transplant surgeon, Dr. Stegall. He sees no problem with doing another transplant; they have been finding that the transplant glomeralopathy is not uncommon in positive crossmatch transplants, but he is also feeling the new drug looks promising. There is no question that this is all still new territory, but at my age I am willing to give it a go if I can find a donor.

Tomorrow and Wednesday are filled with more appointments, but nothing too bad!

[Romona]

I am thinking of you.

[MIbarra]

Jill, sorry to hear about the transplant. I'll keep positive thoughts for you during the transplant evaluation and the rest of the process!   

[Beth36]

I am crossing everything for you!!! I hope the new drug is as good to you as it has been to my mom.....Dr. Gloor and Dr. Stegall rock! Love them! I hope you get good news and great results...thinking of you!

Beth

[pelagia]

Thanks for sharing the details.  It sounds as if the eval went well. And it sounds as if you have fabulous doctors.  Now I hope you can find a donor 

[Jill D.]

Well, I received the official word today that I have been approved for another transplant!! I am very lucky that I have three wonderful people that have offered to be tested (and are the correct blood type) and 3 or 4 others who have offered but need to find out their blood type. I am keeping my fingers crossed!!

[donnia]

Yay!!!!  I am happy you were approved!!!!  I am so sorry, I had no idea that you were having problems.  I am going to go read the other thread you posted to get up to speed.  You are in my prayers dear!  Great Bug   

[okarol]

  Good news Jill!!
I hope everything progresses smoothly and you are feeling better again. 

[pelagia]

  I am so happy to hear the good news.   

[Rerun]

I'm so glad that you were approved AND that you have so many people in your life that care enough to give.  That is good news!