Acute Kidney and Liver Failure: Looking for help/direction

Posted by pandaqty @pandaqty, Jul 8, 2019

I recently joined here looking for answers to help my new husband. We were married last week in his palliative care hospital room. He is suffering from Acute Kidney Failure (Stage 5 I believe) and is going to hemodialasys about every 3 to 6 days. I'm trying to help him get on the transplant list as his numbers were so bad, the last transplant center denied him a transplant.
I have promised him I will fight this with him, and am trying to reach out as best I can to all avenues to find answers which may help in anyway.
I guess, basically, I have no idea what I'm looking for or asking, but I have questions and need some guidance as to the best way to help him right now. Good signs vs bad signs... we just need help.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@pandaqty

@rosemarya , we have had amazing things happening. His nephrologist confirmed this morning that he will be coming off dialysis permanently, the catheter in his neck will be removed today, and with hope, he will be released from the hospital this weekend for his birthday. Over the past 2 weeks, his creatatine level dropped from 8 down to 1.9 as of yesterday morning (a 10% improvement over 24 hours alone). The hospital staff is in disbelief as they were sure he was within days of passing away. His liver function is in improvement as well, and we will be looking at options for future treatment in that area soon. We have a long road ahead still, and we are taking things slowly in order to continue with a stable recovery.
We are starting planning for my cross-country move and future plans, but again taking things slowly as to not cause undue stress on either of us. We have had a roller coaster 5 weeks with the lowest lows and highest highs, and we have learned so much.

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@pandaqty Your husband’s recovery is remarkable. You both must be ecstatic about it, what a huge relief. As @gingerw said, his story would probably be helpful for many in similar predicaments. Would he still need a kidney transplant? I suspect that now, with the improvements he has made that he would qualify.
If he is at a point where he does qualify for a transplant, another hospital to consider is Mass General. My liver transplant surgeon, Dr. Nahel Elias, is actually the head of the kidney transplant department and in my opinion you could not do better. It can be good to be listed at more than one transplant center. If a liver had not come through for me when it did, I would have listed at Mayo. They had already told me that I would in all probability be listed there and they thought they could transplant me at a lower MELD score than was expected in MA - the hospitals in Boston are so renowned that like at Mayo, people come from all over the world to go to them so the demand is great. For me the choice was easy. MGH is 55 miles down the highway.
JK

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@gingerw, to be honest, the doctors aren't able to pinpoint what happened or when exactly... they went from one day (last Monday) telling him he had no kidney or liver function still, to 2 days later, function was coming back to both kidney and liver, and there was a slim slim slim chance of reducing dialysis or the even slimmer chance of coming off dialysis all together... And as of yesterday, he is off dialysis and the port in his neck was removed. In fact, he just told me that his nephrologist is ready to let him go today rather than Friday or Saturday.

What I can say, is the changes in his lifestyle that we made while I was there last. My mom is a licenced holistic nutrition coach, and when he said he was ready to fight, she and I worked out an eating and herbal/supplemental plan for him. He stopped eating the food that the hospital was providing for renal patients and began eating only low sodium, Non-GMO, Organic Plant-based foods... he is drinking a Naked Juice Green Machine daily, its ingredients are kidney/liver super foods, using peanuts, beans, and dark leafy greens for protein. After discussing with the hospital and his care team (none which had any opposition to this) He's taking what he calls his "fab 5" supplements/herbs... started with Milk Thistle, then Dandelion Root, Burdock Root, Red Clover, and Turmeric with Black Pepper &Tart Cherry. We would do one supplement every 2 days to see how his body and system would respond. I got him pH strips to test his urine pH- it started out very acidic at a 5.5, so we found some alkaline water, and he's been sticking to that, and his pH is now a solid 7 (neutral). Every morning he has a cup of warm water with the juice of one lemon or lime in it.

His care team started taking him off their prescribed medications while I was there 2 weeks ago. He is now only on one medication for low blood pressure, but its steadily going back to normal as well. He went into the hospital on no less than 20 prescriptions, and then added more, only to now remove them as his system function is returning so well without the need for the medications. He has been off lactulose and any pain killers for nearly 2 weeks as well.

I would love to think that the natural and simple foods have helped in his improvement, his primary care doctor in the palliative care department feels very strongly they have, and have written down the supplements he's taking as part of his care program.

I also cannot deny that a huge part of this improvement may also be attributed to our faith, hope and fight, and the countless prayers that we and our family and friends have been offering. I'm very well aware of statistics and the prognosis that he was given, and I'm in awe and speechless as to the turn around myself... as is he. We have been preparing for the worst, and hoping for the best... and now just even more grateful for each day we have, because it is a gift.

I know that this is probably not the response a lot of people here will expect, or condone as its not a "medically sanctioned routine" or that I wasn't careful or didn't talk to the right people or X,Y & Z... but all I can say is what we have done. When he was faced with "this is the end" he said he didn't have anything to lose, and would give it a shot. 2 weeks later, he's coming home, off of dialysis, liver and kidney function both improved to the point of no medications needed, and being re-evaluated for the possible need of liver transplant. I don't know how to explain it. The doctors can't explain it. But.... this is where we are and what we did to get there.

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@pandaqty

@gingerw, to be honest, the doctors aren't able to pinpoint what happened or when exactly... they went from one day (last Monday) telling him he had no kidney or liver function still, to 2 days later, function was coming back to both kidney and liver, and there was a slim slim slim chance of reducing dialysis or the even slimmer chance of coming off dialysis all together... And as of yesterday, he is off dialysis and the port in his neck was removed. In fact, he just told me that his nephrologist is ready to let him go today rather than Friday or Saturday.

What I can say, is the changes in his lifestyle that we made while I was there last. My mom is a licenced holistic nutrition coach, and when he said he was ready to fight, she and I worked out an eating and herbal/supplemental plan for him. He stopped eating the food that the hospital was providing for renal patients and began eating only low sodium, Non-GMO, Organic Plant-based foods... he is drinking a Naked Juice Green Machine daily, its ingredients are kidney/liver super foods, using peanuts, beans, and dark leafy greens for protein. After discussing with the hospital and his care team (none which had any opposition to this) He's taking what he calls his "fab 5" supplements/herbs... started with Milk Thistle, then Dandelion Root, Burdock Root, Red Clover, and Turmeric with Black Pepper &Tart Cherry. We would do one supplement every 2 days to see how his body and system would respond. I got him pH strips to test his urine pH- it started out very acidic at a 5.5, so we found some alkaline water, and he's been sticking to that, and his pH is now a solid 7 (neutral). Every morning he has a cup of warm water with the juice of one lemon or lime in it.

His care team started taking him off their prescribed medications while I was there 2 weeks ago. He is now only on one medication for low blood pressure, but its steadily going back to normal as well. He went into the hospital on no less than 20 prescriptions, and then added more, only to now remove them as his system function is returning so well without the need for the medications. He has been off lactulose and any pain killers for nearly 2 weeks as well.

I would love to think that the natural and simple foods have helped in his improvement, his primary care doctor in the palliative care department feels very strongly they have, and have written down the supplements he's taking as part of his care program.

I also cannot deny that a huge part of this improvement may also be attributed to our faith, hope and fight, and the countless prayers that we and our family and friends have been offering. I'm very well aware of statistics and the prognosis that he was given, and I'm in awe and speechless as to the turn around myself... as is he. We have been preparing for the worst, and hoping for the best... and now just even more grateful for each day we have, because it is a gift.

I know that this is probably not the response a lot of people here will expect, or condone as its not a "medically sanctioned routine" or that I wasn't careful or didn't talk to the right people or X,Y & Z... but all I can say is what we have done. When he was faced with "this is the end" he said he didn't have anything to lose, and would give it a shot. 2 weeks later, he's coming home, off of dialysis, liver and kidney function both improved to the point of no medications needed, and being re-evaluated for the possible need of liver transplant. I don't know how to explain it. The doctors can't explain it. But.... this is where we are and what we did to get there.

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@pandaqty There are always many opinions. When someone honestly relates what their story is and what has happened to them and how things have improved, they have no any reason to not tell the truth. I am not doubting as I know the body is a miracle. For you, your husband and all of your friends and family, having found the right combination of things to help him is what made the difference. And you cannot discount the fact that he said "yes". When someone agrees and is a willing participant I have found that things change in the body and the response to be dramatically different. Good luck to you and we want you to come back and tell us how things go.
Ginger

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Hello,
First I would find out why he was refused, then I think you should attend a kidney donor class and find out if you or one of his relatives can give him a kidney. What other issues does he have?

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@ritajs518

Hello,
First I would find out why he was refused, then I think you should attend a kidney donor class and find out if you or one of his relatives can give him a kidney. What other issues does he have?

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Hi @ritajs518 and welcome to Connect. I look forward to getting to know more about you. Do you have kidney disease? Or have experience with kidney organ donation? Talk soon I hope.

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