1. < Kidney & Bladder

Stage 5 renal failure: Docs says options are death or dialysis

Posted by larry1943 @larry1943, Oct 9, 2019

Diagnosed with stge 5 renal failure...gfr has been 13 now 6 plus weeks. Doctor says last week its death or dialysis!!! No option, waited on 2 units of blood and additional bloodwork this week. GFR show 16 ....how can this be? I urinate lots have limited swelling is this normal, should I give in and have dialysis. I was appalled when she suggested hospice or pallative measures.

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larry1943 | @larry1943 | Oct 10, 2019
In reply to @kamama94 "@larry1943, Never give up. New discoveries are made nearly every day and miracles happen. I too..." + (show)
@kamama94

@larry1943, Never give up. New discoveries are made nearly every day and miracles happen. I too am a diabetic with heart failure and COPD along with CKD and I know what it's like to get discouraged, to resist the idea of dialysis, and to focus on lab results. You are here and I am here today. In this right now moment. And good things may happen today even if it's just that the sun comes out or we see a blade of new grass or hear a bird singing. Hang in there! A lot of people care about you!

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You are right, however it is so hard to remain positive.

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larry1943 | @larry1943 | Oct 10, 2019
In reply to @gingerw "@larry1943 I hope you are reading our replies to you, and see that you have a..." + (show)
@gingerw

@larry1943 I hope you are reading our replies to you, and see that you have a cheering section here. The kidneys are a wondrous organ and all the things they do for us, are not always noticed until they are not working well. But they need to be supported to work well: good diet, moderate exercise, care in lifestyle, etc. Lack of fluid retention and ability to urinate is not always a sign of good kidney function. Differences in GFR can be the result of different labs/testing equipment, hydration levels at the time of the labwork, foods eaten in the days before having blood drawn. For myself, I have seen two different GFR levels coming from same sample, as two different machines were used. The overall trend is the key to watch. It sounds your Dr has been working with you, and you also have a part to play. My husband was on peritoneal dialysis for 5.5 years before his transplant, and never let it stop him. Usually a Dr starts talking about/considering dialysis about GFR 20. Diabetes and high blood pressure are the leading causes of kidney issues. Is you endocrinologist working with your kidney Dr to manage your case? How are you feeling about what we have commented to you? A good source for information is http://www.rsnhope.org, founded by a lady who started her kidney disease journey at the age of 3.
Ginger

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Thank you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 10, 2019
In reply to @gle "I had the same problem just before my transplant. 12 years ago, I had been evaluated..." + (show)
@gle

I had the same problem just before my transplant. 12 years ago, I had been evaluated for a liver and rejected at a local hospital because of my weight (too high). Four days after I left the hospital my kidneys failed and I went to the ICU and put on 24 hour dialysis. I was told I needed a liver transplant quickly and my doctors tried to find a hospital that would accept me. My nephrologist had a colleague that now worked at Mayo, Jax. The colleague asked for my chart and it was faxed to them. The next morning, Mayo called and told my nephrologist to get me on an air ambulance ASAP. The next afternoon my wife and I flew from Dallas to Jacksonville. I was admitted to the ICU and placed back on 24 hour dialysis. After 5 days of evaluation I was put on the top of the liver list with a meld of 43. (Extra points for the kidney failure.)
Of the team of nephrologists there, they said they would like to have time for a liver - kidney transplant, but I didn’t have the time to wait for a kidney. My liver was failing too quickly and I could live on dialysis until a kidney became available. Also, they said there was a great chance the kidney would start working again after the liver transplant. They said the kidney failure is from hepatal-renal syndrome. The diseased liver forces the kidneys into failure.
I had my liver transplant 10 days after I arrived at Mayo.
It turned out my kidneys did start working again, but not well. The best I got was a GFR of 26. They predicted I would lose the little kidney function I had and I would be put on the kidney transplant list in 5 years. As it turned out, 10 years after the transplant, the kidney function dropped to 17% and it has stayed in that area for almost 2 years. I am currently on the list, but looking for a live donor.

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@gle, Welcome to Connect. What an amazing story! We do share some similar experiences. It is remarkable that we have come this far, isn't it. I am thankful every day for my annonymous donor. And I have made it my priority to take good care of these "new" organs. I received both liver and kidney in a simultaneous transplant ( 1 donor, 2 organs, 1 surgery).

Since you are on the kidney transplant list and looking for a donor, I want to share the the Mayo Clinic Transplant - Page Recipient Toolkit and the Living Donor Toolkit. You will find information to share with potential donors. https://connect.mayoclinic.org/page/transplant/

Here is a discussion where members are sharing their firsthand accout about being a living donor.
Kidney transplant - The Journey from the Donor's Side.
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
I would enjoy hearing more about your liver tranplant experience, so I want to invite you to join me in the Liver Transplant Group. Currently there are some patients talking about their liver transplants as well as some post transplant complications in the Liver Support Group. https://connect.mayoclinic.org/discussion/liver-support-group/

I hope to join you there soon. -Just click the link, and post a response or question,. If you want help, let me know.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 1, 2020
In reply to @erasmus1952 "i went to dialisys 3 times a week for over i yr during that time i..." + (show)
@erasmus1952

i went to dialisys 3 times a week for over i yr during that time i seemed to be getting better so i wheen myself to going from three times a week to 2times a week until i so now i dont go at all. Its been now over 10 months and i dont take any medications at all. My question is do i still have end stage renal diesease or was i misdiagnosed what do you think

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@erasmus1952 Welcome to Mayo Connect. We are all patients or family members or caregivers here. We are not medical professional and cannot give medical advice nor diagnoses. What condition led you to be told you have kidney disease, then placed on dialysis? Is your doctor aware you reduced then stopped your dialysis, and what is their comment to you? Have you had bloodwork done recently that would indicate how healthy your kidneys are at this point?

I believe this conversation would be better suited for the Kidney and Bladder discussion group, and would ask @colleenyoung to move it there. This way, there are many other members who would see your question and be able to share their experience with you.
Ginger

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erasmus1952 | @erasmus1952 | Apr 1, 2020

i went to dialisys 3 times a week for over i yr during that time i seemed to be getting better so i wheen myself to going from three times a week to 2times a week until i so now i dont go at all. Its been now over 10 months and i dont take any medications at all. My question is do i still have end stage renal diesease or was i misdiagnosed what do you think

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1, 2020
In reply to @erasmus1952 "i went to dialisys 3 times a week for over i yr during that time i..." + (show)
@erasmus1952

i went to dialisys 3 times a week for over i yr during that time i seemed to be getting better so i wheen myself to going from three times a week to 2times a week until i so now i dont go at all. Its been now over 10 months and i dont take any medications at all. My question is do i still have end stage renal diesease or was i misdiagnosed what do you think

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Hi @erasmus1952, I add my welcome to @gingerw's. As suggested, I moved your message to this existing discussion about end-stage renal disease in the Kidney & Bladder group. I did this so you could meet others like @larry1943 @jolinda @gle @kamama94 who have experience with renal failure and dialysis.

I, too, would like to understand what led to your original diagnosis or end-stage kidney disease. Did you wean off of dialysis with your doctor? What tests have you done since ending dialysis?

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