Dialysis and/or Donor's List

[verdogo]

My GFR is at 20 and the creatinine is around 2.49. I am wondering is my gfr going to drop faster now that I'm closer to dialysis, or will it continue to drop at the same rate? And for the people who got a donor kidney, how has that been for you? I'm trying to decide if I want to be on the list. I need to wait for until myself to be 5 years cancer free before they will let me on the list. I have to wait until 2022. But they did say they would take into consideration dialysis. So if dialysis comes in the near future they would take me earlier. They would rather you not be on dialysis before hand. So I'm trying to educate myself the best I can, and I would love to hear others opinions on this. I'll say Thank You in advance to any answers... Jin

[Bunkin]

Your GFR won’t necessarily drop faster. Just watch your diet. I’ve been on dialysis since April. My transplant is scheduled for feb 2. My Gfr has been 3 forever! In the mr you’re in my thoughts and prayers.

[daxielovinglady]

Verdogo, it's a "No Brainer" re; transplant Mine was Feb.2020 & , although it's a long slog, I'm getting there . A second chance of living life is thrilling, grab it with both hands. Stay safe & Best Wishes.

[Darlenia]

Hi Verdogo. My advice is to listen closely to your team and take your next steps from them. If they're suggesting you visit a transplant center or check out a dialysis facility, that generally provides a statement on the situation you might well wind up facing soon. In my husband's case, he stayed in Stage 3 kidney disease for many, many years. Then, abruptly, he fell into Stage 4 which was followed a few months later by Stage 5 (ESRD). It happened very fast, in a matter of months, and he was largely unprepared. According to his nephrologist, this rate of decline isn't unusual. He succinctly said, "When kidneys decide to go, they will go." Looking back I sense my husband's diabetes (T2) led to a tipping point as it likely took out additional essential blood vessels in his kidneys at that time. This said, our bodies are all different. So this is our experience only, others may be completely different. However, it's always good to be vigilant and not fall into a state of denial. I'd like to add that if we could turn the clock back, we would have: 1) Eradicated the diabetes far sooner-he's finally managed to do so while on dialysis. 2) Looked into the various forms of dialysis sooner rather than dealing with it in crisis mode. 3) Applied and gotten on the transplant list before dialysis in hopes of preventing dialysis. In looking at living donor versus deceased donor options, we decided to wait for a deceased donor. We are assuming our children will need both their kidneys as diabetes may well affect them later on. There is also the possibility that they will lead much longer lives that we will - requiring use of both kidneys. I hope this helps you in charting your journey. Sending encouragement for great preparation and wonderful outcomes.

[hope1419 in reply to Darlenia]

I am not sure how old your husband is, but the shortest you are in diálisis the better. I know you worry about your children's health. But ñ, everyone can live with one kidney. Besides, in case of a future need for them to need a kidney, previous donnors are always jumped to the front of the list. A living donnor is always better and provides longe life expectanxu of the transplant.

[Darlenia in reply to hope1419]

We're senior citizens so living a really long life is not so much a concern. With my husband now on dialysis, I tend to look at things with a long range perspective - particularly regarding living donor issues, and several things stand out. 1) Aging is an issue. For example, I offered one of my kidneys to my hubby but the transplant center rejected me based on my age - 69 at the time - without even looking at my records. So having two kidneys is a very good thing, in my opinion, for some who expect to grow very old. 2) Genetics is another consideration. While I have no diabetes, there is a big issue of diabetes for my children. This is the disease that drove my husband into ESRD. 3) Cost surrounding a living donor is another matter. It can be prohibitive as one has to pick up hotel and travel costs, wages lost, and more for those donating. 4) The availability of deceased donor kidneys for seniors should be kept in mind. Often, seniors will receive less-than-optimal kidneys that generally would not be acceptable for younger candidates. 4) Then there are the family dynamics and behavioral issues. To us, this is the most important factor and is a subject that is rarely addressed. My grown children are now hyper vigilant about their dad and themselves. Their carefree days are gone. (This is echoed on other forums.) It's altered life dramatically for all - one no longer runs his cherished ultra marathons, another dropped his favorite drinks and distance biking, everyone directs anxious looks at their dad, the calls and texts are frequent. (It's affected me, too. Even I question the occasional back pain.) People assume it's a given that friends and family will rush in and donate. It's important to recognize this may not happen - family and friends realize the value of that organ; after all, they have a front row seat watching it all go down. Yes, they would be first in line for a new kidney if they donate, but they are now familiar with that awful spiral. As my pastor sagely said, "That's very understandable. Can you blame them?" When he said that, I finally received the comfort and support I needed to carry on. It's a very complicated subject, laced with emotions - love, care, pressure (terribly hard on parents), anger, depression, and more. I truly hope no one here is thrown into this situation. So here I am - encouraging you all to keep yourselves as healthy as possible for yourself and for others. May many blessings come your way.

[hope1419]

Verdogo, in my expereice, you need to look at your numbers in a more wholistic way. Gfr of 20 is not that bad. Creatinine of 2.49 either, but you also need to check your BUN, hopefully under 100 and your general wellbeing. Are you retaining liquids?, having low energy or not. Consider all that before signing up for diálisis. As you, I didn't know what to do when I was first told I needed to get on the list, my GFR was around 18. I got on the transplant list as soon as I could pre-dyalisis. I also read as much as I could, modified my diet and liquid intake to keep my kidney funcrion for as long as I can. I kept pushing the time of dyalisis because of all the restrictions ans side effects that come with it. I changed a lot of things and take.my medicine daily. At the moment I am almost 3 years later with GFR 13 creatinine close to 4 and Bun of around 55. Still pre dyalis and doing relatively well, I have accumulates 2 ans 1/2 years in the list. And I am actively looking for a donor. Anyway... all this to tell you. Do not let the numbers scare you, but get informed about improving your diet and how to preserve your kidney function longer. All kidney diseases are different. So, just you and your doctor may know how your own journey evolves..( My cdk has to do with high protein rather than sodium. The big drop for me happened due to stress ans not always taking my meds. I learned the hard way.) Also, read about the different treatments. Different kinds of dyalisis, different options for transplant, multilisting, etc. Good things ans side effects of both. From what I have read dyalisis is better than nothing, but it has its limitations. Become your own advocate and learn to know your body signs.

[jesselizzard in reply to hope1419]

Thanks for sharing this. My GFR went from 23 to 20 and a few weeks later to 22. My Creatinine went from 2.2 to 2.5 then down to 2.2. Bun went to 40 and then down to 33. I just turned 70 and I don’t want to go on dialysis. That is my worst nightmare. I am in good shape and get tired here and there, but I exercise and take long walks. I pray I stay above 20 GFR for as long as possible. I am careful with my diet most of the time and only drink water. Your advice is appreciated.

[hope1419]

I am glad it helps. Keep watching your diet and water. I am sure you will be fine for.many years. You can be without dyalisis until about GFr 7. So, my goal, keep it where it is, and don't let it go simple digits. Check renal diets. Things that .might be usually heslthy are not recommended for certsin renal patients. Davita has grest advise and recipes. Sometimes, they have classes you need to take to be informed. Thst is the clue. Lesrn as much as you csn on your illness, so you can act sccordingly.

[browneyes1999]

I will be praying for you