Awaiting Kidney Transplant : Hello, everyone... - Kidney Disease

Kidney Disease

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Awaiting Kidney Transplant

Jalen profile image
6 Replies

Hello, everyone. I have questions about being prepared for a kidney transplant. I feel completely unprepared and do not know what questions to ask my transplant coordinator. I have been on dialysis for five years. I have a potential donor who is well into the evaluation process at my transplant center. He will be doing a paired donation if all goes well. He gets a lot of information, but I feel completely in the dark. I plan to call my coordinator, but I am wondering what questions to ask her. Can anyone offer suggestions?

6 Replies
Ladybug_05 profile image
Ladybug_05

Hi Jalen! I'm actually 3 months post transplant and did a live donation as well! For privacy reasons, recipients are left in the dark as far as their donor is concerned, and it is up to the donor to give you information about how they are doing in the donor process. When my last donor was screened, I was only told if we were a match and if they tested positive or negative for the viruses that they test for. The only other thing that I was informed of is if they were moving to the next stage of screening and if I wanted to move forward as well. Fortunately for me, my step sister was my donor and we're very close, so I was kept pretty close in the loop about how she was doing and progressing.

What parts of transplant are you wondering about? I am more than happy to help in any way that I can! A good place to start would be going over your transplant manual and writing down any questions you may have from the book. If you don't have a manual, I recommend that you ask your coordinator about getting one so you can prepare that way.

sharonlyn profile image
sharonlyn

i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 points...it is similiar to vegan but you cut out sugar...oil...salt...potatoes...tomatoes...no processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with diet...it is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or better...now this is my experience with this way of eating...everyone is different but i found out i ckd not because my doctor told me but that i looked at my labs...if you are really serious in having better kidney function at least check out this group...

Glazier profile image
Glazier in reply to sharonlyn

How do I join the group?

Mhusband27 profile image
Mhusband27 in reply to sharonlyn

How did this information get posted AGAIN under a person's request for Transplant info?

Mhusband27 profile image
Mhusband27

One thing I did, upon the advice of my "team", was to call Walgreen's located in the hospital where I am listed. They had all the information about what my insurance covers and my co-pay for the anti-rejection medication.

My Nephrologist recently told me to "pack a suitcase" and be ready to go in a moment's notice. You are a bit different b/c you have a live donor.

My Transplant Coordinator is not very responsive to my questions. I guess I got a (female) coordinator with a bit of a bad attitude!

I would check out groups on FB that are designed for people who got transplanted.

You can also call UNOS/OTN (unos.org) and ask for some advice about getting ready for transplant. They will send you a folder of information. I haven't read the material in the folder, but it is mostly targeting people on the Transplant List who do not have a live donor. I guess there is a possibility your paired donor person will not pass the evaluations, so you will be back to waiting for a deceased donor or finding another live donor.

I was also assigned a Transplant Coordinator thru my Humana Medicare insurance. Maybe that would be a helpful source.

I hope everything turns out well for your live donor.

Jalen profile image
Jalen in reply to Mhusband27

Thanks. My donor completed his evaluation with flying colors. We are both grateful.

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