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

Posted by larry1943 @larry1943, Wed, Oct 9 1:34pm

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.

@larry1943, Welcome to Connect. In February 2009, while waiting for a liver transplant, my kidneys failed suddenly and I was placed in ICU and put on emergency dialysis to keep me alive until the doctors could stabilize my condition and seek further treatment. I tell you that because I also heard "short stay in hospice" as one of two options for me. I tell you that because I definitely know what you are saying and feeling right now.
I was 60 at that time. And my husband agreed to dialysis for me when I couldn't speak for myself. I am glad he did that. After hospitalizaton, I became an outpatient for dialysis. Dialysis kept me alive untilI was able to qualify to be returned to the liver transplant waiting list.

Talk with the doctors. Will the dialysis give them time to find out what caused this situation? Might it be temporary? If it is permanent, is that so bad? I have friends who are doing well and remaining active while on dialysis.
How can I help you?

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Thanks for the response. I am 75 and an amputee with severe diabetes and anemia. I have been on dialysis before when the antibiotic shut my kidneys down while treating a gangrene foot. I only did dialysis for about 6 weeks it was awful. I have been off now for 2 years …however my doctor has tried for the last year to put a port and start dialysis. I don't feel I'm at that level. I urinate a lot and I don" have excessive swelling.

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@larry1943
Hi Larry,

Clearly you are a fighter if you've battled diabetes, a bout with dialysis and gangrene!!! You sound like one tough cookie. 🙂

Typically ports need to mature for 6 months before they can be used, maybe your Doctor is thinking ahead? I'd try to think of the port as an insurance policy, hopefully you won't need it anytime soon but if you do you'll be glad you have it.

Wishing you all of the best,
@jolinda

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@rosemarya

@larry1943, Welcome to Connect. In February 2009, while waiting for a liver transplant, my kidneys failed suddenly and I was placed in ICU and put on emergency dialysis to keep me alive until the doctors could stabilize my condition and seek further treatment. I tell you that because I also heard "short stay in hospice" as one of two options for me. I tell you that because I definitely know what you are saying and feeling right now.
I was 60 at that time. And my husband agreed to dialysis for me when I couldn't speak for myself. I am glad he did that. After hospitalizaton, I became an outpatient for dialysis. Dialysis kept me alive untilI was able to qualify to be returned to the liver transplant waiting list.

Talk with the doctors. Will the dialysis give them time to find out what caused this situation? Might it be temporary? If it is permanent, is that so bad? I have friends who are doing well and remaining active while on dialysis.
How can I help you?

Jump to this post

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

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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Thank you for your input I will soon be 76 and I do not qualify for a kidney due to diabetes and obesity. I know I have been in denial about the renal failure because I don't suffer from all major indicators. I can't understand the extreme flucuations from 13 to 16 gfr in one week.

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@jolinda

@larry1943
Hi Larry,

Clearly you are a fighter if you've battled diabetes, a bout with dialysis and gangrene!!! You sound like one tough cookie. 🙂

Typically ports need to mature for 6 months before they can be used, maybe your Doctor is thinking ahead? I'd try to think of the port as an insurance policy, hopefully you won't need it anytime soon but if you do you'll be glad you have it.

Wishing you all of the best,
@jolinda

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Thanks, you may be right. However the comment the dr made after 2 years was if I didn't follow thru she saw no need to continue checking the blood and kidney levels every week.

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@larry1943

Thanks, you may be right. However the comment the dr made after 2 years was if I didn't follow thru she saw no need to continue checking the blood and kidney levels every week.

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@larry1943 I of think of GFR as a measurement of how well your kidneys filter poison out of your blood, so if you dilute your blood (either by adding blood products or being hydrated) the test seems like you have less poison when really you just diluted your blood. I wouldn't focus on the 3% fluctuation, in the big picture it is not a significant change.

What I really care about here is YOU! Even after just a few posts it is clear that you have been through a lot and have fought your way through many close calls. I want you to keep fighting!!! Prove your doctor wrong. Get the fistula, fight through the adjustments that dialysis brings, continue to inspire others. You can do this. As someone who's been in end-stage renal failure I can tell you first hand our brains get foggy, our spirits get weak but that isn't who we really are it is just the toxins in our blood talking. Fight Larry! You can do this and our whole community will be right here cheering you on.

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@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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Thank you …what an inspiration! Yes…I am tired and I have fought for the last three years of my life.

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@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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@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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@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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@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.

Jump to this post

@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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Just happened to run across this on "YOU TUBE" Take it for what it's worth. Same diagnosis as yours but he held off on dialysis and tried something else. He is now, according to him , back to stage 3b. I will always check everything out when I get a no choice diagnosis. You can do the research and weed out the quackery. I'm not suggesting any cures just something that worked for someone else, why not, it's free and informative. "DADVICE"

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