Facing Dialysis and/or Kidney Transplant

[jesselizzard]

I have a GFR between 28 to 34. My nephrologist advised I should meet with the transplant team at my hospital to be evaluated. Up until now, I haven’t seriously thought I would need a kidney transplant. Now, I am feeling very anxious about the road ahead of me. I am possibly facing dialysis and/or a transplant. I have no idea about the timeframe. I would like to know how you dealt with impending kidney failure and how you proceeded. I am feeling very alone and scared of my future. Would love to hear from you. Many thanks.

[CNeb]

All I can say is when I found out it was expected, yet unexpected. I say that because I knew at some point I’d need a transplant, but didn’t expect it for another 10-20, as I was Stage 3 for 20 years. Needing a transplant at 40 was not on my radar. At that point I decided I needed to be my own advocate day in and day out. By that I mean, I changed my diet completely in order to avoid dialysis. I did by going whole food plant-based. Be open and honest to friends, family and acquaintances on your need for a kidney. I wish you the best!

[jesselizzard in reply to CNeb]

Thank you so much. I really appreciate your story. I purchased books on kidney disease, diet and recipes along with supplements to take. I have already started to follow this new eating plan. I will do anything I need to not to go on dialysis/transplant.

[ankitarai267 in reply to jesselizzard]

Could you share the book name

[yahoo999uk]

Hi

When I was first diagnosed with a kidney problem my gfr was 34. With a careful diet and exercise I was able to manage my condition for 4 further years before my gfr dropped below 15 and I was put on the transplant list. I thought I was going to need dialysis, but a miracle happened and 5 months later a kidney match was found. That was 1 1/2 years ago. Today my gfr has stabilised at just under 60. My advice is to stay positive, seek all the advice you can and follow the recommendations of your renal consultant.

I wish you all the best

Stan

[Kbressler NKF Peer Mentor NKF Ambassador]

Follow your Nephrologists recommendation. Actively seek a donor amongst family or friends. Prepare for transplant dialysis is not the answer. I was transplanted 31 years ago after two sessions of dialysis then my brother gave me a kidney. That was April 30, 1987. Get healthy have the transplant before you go on dialysis. NKF has great information on kidney.org. There is a free organization that you can explore it is kidneysolutions.org. On Facebook it is kidneysolutions:a network of transplant experience.

[jesselizzard in reply to Kbressler]

Thank you and happy you are doing so well for such a long time.

[Kt4920 in reply to Kbressler]

Very new to this disease-starting dialysis in the very near future. So you have to continue dialysis even after getting a transplant?

[maryalraines NKF Ambassador]

My nephrologist was wonderful and helped me stay well so that I would not go into complete kidney failure. As I approached (after 15 yrs of watching & following) and was in stage 4/5 he suggested dialysis so that I could spare my health and be healthy for a transplant. Dialysis isn’t great but it spared me long enough until I could find a donor and get my new kidney. I went on dialysis in January and transplanted in November of the same year. Any transplant is better and has a higher rate of success if you never have to be on dialysis and therefore the shorter time you’re on dialysis the better a high success rate.

Try as best you can to get the transplant and avoid dialysis. Wishing you all my best; you can do this and go on enjoying a full productive life.

[jesselizzard in reply to maryalraines]

Thank you so much. I am so afraid of the future...dialysis and transplant. Right now, I am sticking to a whole food plant diet as best I can and I’m drinking lots of water. Hoping that day doesn’t come soon.

[Kt4920 in reply to jesselizzard]

We're struggling with eating the right foods. Wondering, if you don't mind, sharing some of the recipes you have compiled together for your whole food plant diet?

[WYOAnne NKF Ambassador]

Yes, everyone gave you great advice. Be your own advocate! Ask your doctor and transplant team questions. Write them down now so you will be ready for your appointment at the transplant center. Actively search for a living donor. Tell people at work, church, neighbors, friends, relatives......anyone and everyone. I am 18+ years post transplant (1999). I was pursuing a living donor with a friend and a cousin, when I received the call from the transplant center that they had a kidney for me from a deceased donor. It was an incredible match with a 4/6 match. And here I am today living well!

A positive attitude is a must. I found out everything I could, what to expect before and after my transplant. The whole process was still scary, but it helped knowing what to expect. I will always remember a nurse, when I was checked in to the hospital for my transplant - she told me that I would do well because I had the right attitude!

Keep us posted

[jesselizzard in reply to WYOAnne]

You have an amazing story and you gave me hope for a brighter future. Good luck to you and stay healthy.

[rabbit01]

Crikey, all I can say is that I was diagnosed at 17% eGFR four years ago and am still not on dialysis. My eGFR is currently 14% but docs are suggesting I am still a year away from dialysis based on my current rate of decline. You have given no indication of your rate of decline so difficult to advise but hopefully you have a long time left before needing dialysis.

[jesselizzard in reply to rabbit01]

I really don’t know my rate of decline but I’m eating a whole plant food based diet and drinking lots of water. Hoping this keeps my GFR stable and doesn’t decline for ,any more years. I can only hope. Good luck and hope all goes well for you.

[Nikki41775]

Hi! I understand your situation completely. I was diagnosed in 2008 and my nephrologist at the time had me a "stable stage 3" for many years. It wasn't until this year when I decided to switch doctors because she was staging me using my creatinine clearance and not the eGFR number which went against everything that I read. So when I went to my new doctor, I find out I'm ESRD. Its been a world wind for the past few months. Going from knowing that dialysis was in my future to all of a sudden having it in my very immediate future has been very hard for me to take.

I've already met with the transplant team and am waiting to officially be "listed". I have a living donor who is working on getting medically cleared.

I have a fabulous husband who has been my constant source of support however I don't really expect him to understand what I am going through and what I am feeling since there is no way he can. I am super happy I found this site. I visit it several times a day and it helps me to see that people are out there who understand how I feel and understand what I am going through.

Keep in touch and let me know how you are doing! Best of luck to you!!

[maryalraines NKF Ambassador]

I was exactly where you are now...4 yrs ago. My nephrologist was very proactive and suggested that I get listed for a transplant when my #s were at the appropriate level to be eligible for transplant. Optimally getting the transplant before you need dialysis is best. However looking for a living donor is sometimes a slow process so my dr decided it was best to go ahead and start dialysis so I wouldn’t get sick and would be able to maintain my health to be ready for the transplant. It worked. Went on dialysis 1/22/15, transplanted 11/4/15 with an ultristic donor. A relatively short period of time. I found my donor in Feb 2015 but it took 10 months of testing, getting schedules of everyone concerned coordinated and finally transplant. Hang in there...you’ll get it done. If you want to talk, let me know.

[Gotthecall_123]

Hi my name is Dave when I was diagnosed it was a shock took a while to process but I did what I had to do the determin if you need dialyses or transplant by many things my kidney function was at 12% I had to start dialysis wright away had to have sergers for a dialyses cathador then I needed a few weeks for the incision to heal while I was waiting I was trained got home dialyses that took a week it’s was all overwhelming it took a while to wrap my head around it all they may also get you ready for hemodialysis good luck and if you have any questions don’t hesitate

Dave🙏🙏😛

[NeedingAdonor]

It's really a challenge Jesse. My husband Greg awaits a transplant. We've already had about 6 screened and await a 7th who is coming out here to test this summer. My husband has been on dialysis for 3 yrs. He didn't have a choice when he had End Stage Renal Failure. I think thats when function is below 15%. We sought out support and mentorship on how to search. I even read about one lady who grabbed markers and wrote it on the back windshield of her car to advertise for hubby and got one that way. You will read inspiring stories. The health component is the worst part. The quality of life changing. However, at this stage for you, can you potentially reverse it with lifestyle changes (food, exercise etc) ?

[jesselizzard]

You can definitely help to slow the progression by eating a plant based diet. My GFR has been holding its own since I started this diet and I am hoping my numbers stay stable. Good luck with the transplant and hope you find a donor soon.

[Dara3351]

When I found out I had chronic kidney disease February’17 my GFR was 17. I immediately went plant based with the help of a dietician. It varied between 12-17. I never had dialysis. I had my transplant Feb’19 and accepted a kidney with Hep C. I did a 12 week program and no longer have Hep C. I stayed positive, prayed, had friends pray and was fortunate to get a kidney. So happy a kidney was made available to me. I was walking the next day after the surgery and even was released a day early. Wishing you the best!

[jesselizzard in reply to Dara3351]

What a story! Congratulations on your transplant and amazing recovery! I can only hppe and pray for a similar outcome when my time arrives. Thanks for sharing.

[Dara3351 in reply to jesselizzard]

Just stay positive!

[Eyak1971]

Everyone's story is different due to multiple factors. I over reacted and changed my diet to the point I increased the result of kidney stones due to too much orange juice. Went on a fruit and veggie diet. Lost lbs. But not healthier. Ended up on pd dialysis. Never really felt bad. Waited 5 years for transplant and fortunately received one even at the age of 70. Now 1 year past transplant life has gotten more complicated due to medication and constant worry of kidney function. Hopefully as time passes and covid is somewhat under control the stress Will subside and life Will become less worrisome. I guess the best advice is be in the moment and trust your own instincts. God be with you in every decision you make.

[chicago17]

Hi your kidney function is good at the moment I had a kidney function for many yrs GFR of 22 my consultant told me I would not go on a transplant list until my GFR reached 11 I'm also stage 2 diabetic I worked 27 hours a week even when my GFR was 11 I didn't feel ill maybe just a little tired . I actually got my transplant in 2018 when my GFR hit 9 . I was 25 when my GFR was at 28 I'm now 65 so it took all those yrs for me to get a transplant its a slow process so I wouldn't worry to much about it you could go yrs before a transplant is needed good luck 😊