Failing Fast

[ILMA54]

I am a 54 year old male. I was born with one kidney, which we found out when I was 26. It has been failing. For 10 years GFR was stable in the mid 20s. Since last March, it has dropped to 11 (was 15 three months ago). On the transplant list for 6 months. Need advice on finding donors and managing disease.

[cs65 NKF Ambassador]

Have you considered dialysis? It can buy you time and manage your failing kidney while you wait for a transplant. I have been on the transplant list and receiving dialysis for 2 years and 4 months. It is not as bad as it seems as long as you bring something to do while you are on the machine - I bring a book, others play on their cellphones or tablets or bring a newspaper, etc. For finding donors, you can get advice from the National Kidney Foundation on starting a campaign for finding a living donor. Just go to their website. It can be long process, full of ups and downs, but it is definitely something to consider! Good luck to you!

[ILMA54 in reply to cs65]

I have considered dialysis. We started early (or what we thought was early) when my GFR was 20. That was last September. The goal was to give ourselves enough time to avoid the need for dialysis.

Thanks for the suggestion on NKF and donors.

[mhawk123 in reply to ILMA54]

In terms of managing the disease, try to keep your blood pressure stable. Also, stick to the diet of CKD to keep your labs from flying off the handle. Keeping a healthy blood sugar by following a good low carb diet. The most important is having regular checkups with your doctor so that your parameters can be followed closely. Good luck with finding a donor. Try to get on the transplant list at two different institutions to increase your chance of finding a kidney.

[3Kidneys]

You will most likely need to have dialysis prior to transplant unless you’re able to find a living donor soon. Talk with your doctor about the different types of dialysis, Go to a nearby dialysis center and talk with a nurse have them show you around. They can/will give you more information on your options while you wait for transplant. As for dialysis, people have their own preferences, I personally prefer peritoneal dialysis over hemodialysis because hemodialysis really wears me out. . Have you asked members of your family, church, clubs if anyone would be interested in donating??? This was an aspect I just couldn’t do personally. I just stayed on dialysis until I got the call. We also had t-shirts made up “in need of a kidney transplant blood type A+” my husband wore one that said “wife needs a kidney transplant A+“ we wore these whenever we had a trip out in public, ya know grocery store, shopping etc., flyers, bumper stickers, a personal blog page, etc. - ultimately, it was fate that gave me a transplant, not anything I did or didn’t do. And there are several groups that promise to get you a kidney if you advertise/list with them - avoid them like the plague.

[WYOAnne NKF Ambassador]

When I was on the transplant list I told everyone about my health. I told family members. My Dad came from a family of 8 siblings. My own sister has 7 children. My cousin was being tested for me. He was a match but doctors discovered his undiagnosed high BP which ruled him out. My brother was ruled out, also due to high BP. My husband was not a match. My daughters were both a match for me but they were in college at the time. I was reluctant to use either of them since neither were married and hadn't had children. 2 of my sister's daughter's had contacted the transplant center about their interest in being a donor for me. I told church members. Several of the members were tested for me but proved not to be a match. One became an anonymous donor for someone else. I told my neighbors and those I worked with. I had a friend and neighbor who was my blood type. She was going to start to be tested as a possible donor. 2 days before, I got the call from my transplant center that they had a kidney for me.

I belonged to a Woman's Club and I made sure they also knew of my need for kidney.

I heard the story of a person that printed a t-shirt and wore it to Disneyland - expressing their need for a living kidney donor. Someone came forward and became their donor.

I guess my point, you never know where your kidney donor will come from.

When I was living in WI & was a member of the donor network, a woman told me that her donor came from someone that was behind her in the grocery store line. They started talking while in line and formed a friendship. They exchanged names and numbers and the next week the woman was tested and was a match. She went on to be a living kidney donor.

If people don't know about your health problems you can't expect someone to come forward offering you a kidney!

The NKF has suggestions for finding a living donor also. I just wanted you to know what I did.

I was on the transplant list for 14 months when I got the call that they had a kidney for me in 1999. I had a deceased donor that was 16. The kidney was a 4/6 match.

Good luck to you and God Bless!