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.

Liked by Leonard

@pandaqty, I am sorry to hear of this unfortunate change of events with your new husband. Does he have a pre-existing health condition that is responsible fot this acute kidney failure? When I had acute kidney failure, I was put on dialysis to do the worhk that the kidneys were not able to do. I was already dealing with liver failure.
In answer to the transplant question, I am going to suggest that you and his doctor discuss this as a future option.
here is some information on Acute Kidney failure. As you will learn, there are many causes for this condition, and sometimes there is a treatment of an underlying condition. I think that this will provide you with some good information about Kidney failure.
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
There is always hope. Let me know how I can help you learn more.

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thank you @rosemarya
if this struggle wasn't already hard enough, we are long distance at the moment as none of this was planned- it all popped up over the last month.
he does have liver failure as well, brought on by cirrhosis of the liver, and a psuedocyst on his pancreas that has a stint and drain in at this point, as it wasn't diagnosed properly until last week.
When he first was put into palliative care, he had no urination, now several days later, he has nearly normal output and approx 6 times a day. His bowel movements have also returned to normal. He's not experiencing any pain, nausea, or swelling. He was having ascites, but that amount of fluid build up has decreased significantly.

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@pandaqty Welcome to Mayo Clinic Connect. We are not doctors, but patients, caregivers and family members who share our experiences and offer solutions to others that may help them. Your husband is very lucky to have you in his corner! What questions do you have? You mentioned your husband has several, underlying medical conditions besides the acute kidney failure, and is on hemodialysis. A transplant center will not consider potential organ recipients unless they are in good enough health/shape to survive the actual surgery and give the new organ the best opportunity to be successful. A patient can be on the list but be "inactive" due to illness or recovery from it. Depending on where your husband is listed, wait times can vary greatly. Of course the fast route to transplant is a living donor; 99.9% of us are given 2 kidneys, but only need 1 to live! When you mentioned you are long distance, are you saying you and he are living apart, or that you are a distance from the transplant center? We'd like to help you all we can!
Ginger

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@gingerw

@pandaqty Welcome to Mayo Clinic Connect. We are not doctors, but patients, caregivers and family members who share our experiences and offer solutions to others that may help them. Your husband is very lucky to have you in his corner! What questions do you have? You mentioned your husband has several, underlying medical conditions besides the acute kidney failure, and is on hemodialysis. A transplant center will not consider potential organ recipients unless they are in good enough health/shape to survive the actual surgery and give the new organ the best opportunity to be successful. A patient can be on the list but be "inactive" due to illness or recovery from it. Depending on where your husband is listed, wait times can vary greatly. Of course the fast route to transplant is a living donor; 99.9% of us are given 2 kidneys, but only need 1 to live! When you mentioned you are long distance, are you saying you and he are living apart, or that you are a distance from the transplant center? We'd like to help you all we can!
Ginger

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I probably misspoke as far as underlying issues as my brain is fairly muddled at the moment trying to wrap my head around everything in the last month.
He had some liver and kidney issues prior to getting pancreatitis, but they were functioning. A treatment they gave him overloaded his system and caused the liver and kidneys to fail.
We got engaged at the end of April, and weren't planning on marriage for a bit longer, but the time line got pushed fast forward. I do live 1600 miles from him currently (New Mexico to North Carolina) but am trying everything I can to get my loose ends tied up so I can be with him… it was all so entirely unexpected, I basically dropped everything to be with him for as long as I possibly could, which of course isnt nearly enough for either of us right now… and I'm really scared when I'm not able to make a trip out and be with him 24/7.
I appreciate all the feedback I can get as this is unfamiliar territory to both of us.
How would I go about speaking to the nephrology department at one of the Mayo Clinics locations to see about getting a 2nd opinion and the possibility of transplant. He has family members willing to be living donors, as am I but my blood type is not a match.

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@pandaqty

thank you @rosemarya
if this struggle wasn't already hard enough, we are long distance at the moment as none of this was planned- it all popped up over the last month.
he does have liver failure as well, brought on by cirrhosis of the liver, and a psuedocyst on his pancreas that has a stint and drain in at this point, as it wasn't diagnosed properly until last week.
When he first was put into palliative care, he had no urination, now several days later, he has nearly normal output and approx 6 times a day. His bowel movements have also returned to normal. He's not experiencing any pain, nausea, or swelling. He was having ascites, but that amount of fluid build up has decreased significantly.

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@pandaqty, After reading more of your information, my heart sends you my love and my hand reaches out actoss the virtual miles to say that I understand what you are feeling right now. My husband was at my side during my darkest hours, I was comforted by knowing that he and/or my loved ones were with me in thought and prayers and were speaking for me when I was not able to.

As a patient, it sounds like he is showing some good signs and I do hope that this morning brings some positive news.
I am sorry that you and he are gong thru this unexpected turn of events, but unfortunately that is what often happens.

Please try to get some rest and to take care of yourself during this because he is going to need your strength Do you have someone with you?

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@pandaqty

I probably misspoke as far as underlying issues as my brain is fairly muddled at the moment trying to wrap my head around everything in the last month.
He had some liver and kidney issues prior to getting pancreatitis, but they were functioning. A treatment they gave him overloaded his system and caused the liver and kidneys to fail.
We got engaged at the end of April, and weren't planning on marriage for a bit longer, but the time line got pushed fast forward. I do live 1600 miles from him currently (New Mexico to North Carolina) but am trying everything I can to get my loose ends tied up so I can be with him… it was all so entirely unexpected, I basically dropped everything to be with him for as long as I possibly could, which of course isnt nearly enough for either of us right now… and I'm really scared when I'm not able to make a trip out and be with him 24/7.
I appreciate all the feedback I can get as this is unfamiliar territory to both of us.
How would I go about speaking to the nephrology department at one of the Mayo Clinics locations to see about getting a 2nd opinion and the possibility of transplant. He has family members willing to be living donors, as am I but my blood type is not a match.

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@pandaqty, Here is a reliable resource for 2nd opinions that I want to give to you. If you click the link it will take you to one of the Newsfeeds in the Mayo Connect Transplant Pages which is presented by the Transplant Staff at Mayo.

Three Reasons Why Getting a Second Opinion Is Worth It – You will find link to Mayo Transplant Dept, and Contact Information
https://connect.mayoclinic.org/page/transplant/?pg=12
The Transplant Pages contain a wealth of helpful information that I also recommend for you and loved ones: Newsfeed, Living Donor and recipient Toolkits, and Resources.

Let me know how he is doing. And how you are doing.
Hugs

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@pandaqty

I probably misspoke as far as underlying issues as my brain is fairly muddled at the moment trying to wrap my head around everything in the last month.
He had some liver and kidney issues prior to getting pancreatitis, but they were functioning. A treatment they gave him overloaded his system and caused the liver and kidneys to fail.
We got engaged at the end of April, and weren't planning on marriage for a bit longer, but the time line got pushed fast forward. I do live 1600 miles from him currently (New Mexico to North Carolina) but am trying everything I can to get my loose ends tied up so I can be with him… it was all so entirely unexpected, I basically dropped everything to be with him for as long as I possibly could, which of course isnt nearly enough for either of us right now… and I'm really scared when I'm not able to make a trip out and be with him 24/7.
I appreciate all the feedback I can get as this is unfamiliar territory to both of us.
How would I go about speaking to the nephrology department at one of the Mayo Clinics locations to see about getting a 2nd opinion and the possibility of transplant. He has family members willing to be living donors, as am I but my blood type is not a match.

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I am also new to this forum. Your situation is daunting. I know I've been dealing with similar issues for over five years (diagnosed with AKF in 2/14). I think you've come to the right place. Mayo is the #1 rated hospital in the nation when it comes to nephrology and overall one of the top centers in the country. Let me also suggest that if you are on Facebook that you search for a private group "Kidney Transplants." You will learn from other's experience. It is very important that you get a second opinion as soon as you can. There is a Mayo in Pheonix you might see. Again, these problems can be solved. You just need to find the right person to help and remember to always advocate for yourself. Learn all that you can about your husband's medical condition and do not always accept your docs opinion and suggestion at face value. You must be a part of the solution. Good luck!

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@rosemarya

@pandaqty, Here is a reliable resource for 2nd opinions that I want to give to you. If you click the link it will take you to one of the Newsfeeds in the Mayo Connect Transplant Pages which is presented by the Transplant Staff at Mayo.

Three Reasons Why Getting a Second Opinion Is Worth It – You will find link to Mayo Transplant Dept, and Contact Information
https://connect.mayoclinic.org/page/transplant/?pg=12
The Transplant Pages contain a wealth of helpful information that I also recommend for you and loved ones: Newsfeed, Living Donor and recipient Toolkits, and Resources.

Let me know how he is doing. And how you are doing.
Hugs

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@rosemarya Thank you so much… I so appreciate your words of kindness and encouragement. I will be calling Mayo Clinic today and see about how to get him a 2nd opinion or direction from them.
From the week of 24 June till now, he has gone from nearly incoherent, to entirely cognitive, sharpening memory where he is even correcting me on certain things, able to use the restroom on his own, "hangry" as he calls his appetite, as well as gaining weight and muscle tone back from his significant weight loss (visible in his face). He is getting himself out of bed every morning and making warm lemon water to start the day. He has no swelling in his feet or legs. Yesterday evening was rough as he had dialysis, and was feeling nauseous for the first time in over a week. He has been off of pain medication as well, and his ammonia levels are way down. We have been doing an entirely plant based diet, which has brought his energy levels up, as well as his appetite and urine and bowel production up as well. I'm keeping him off sodium, and with his doctors permission, we started a supplement regimen of Milk Thistle, Dandelion root, burdock root, tumeric/black pepper, and a couple others which are known to help improve function. Prior to my leaving, his doctor was impressed (so much so, he teared up) with the improvement he had made thus far, and made note of all the things he was taking to include them in his chart and care.
I have my mom with me who is a certified holistic nutrition coach, who is helping me and supporting me as well in this time of separation. His parents are with him as well.
Because this is all such new territory to me, I'm unfamiliar with what improvement may be vs what is expected. For example, I love thinking that his increased energy and fight is a sign of improvement vs being bed ridden and incoherent.

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@maxwell123

I am also new to this forum. Your situation is daunting. I know I've been dealing with similar issues for over five years (diagnosed with AKF in 2/14). I think you've come to the right place. Mayo is the #1 rated hospital in the nation when it comes to nephrology and overall one of the top centers in the country. Let me also suggest that if you are on Facebook that you search for a private group "Kidney Transplants." You will learn from other's experience. It is very important that you get a second opinion as soon as you can. There is a Mayo in Pheonix you might see. Again, these problems can be solved. You just need to find the right person to help and remember to always advocate for yourself. Learn all that you can about your husband's medical condition and do not always accept your docs opinion and suggestion at face value. You must be a part of the solution. Good luck!

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@maxwell123 Thank you so much. I have joined probably 20 facebook groups and am actively interacting on there with questions. He has the option for a living donor transplant from family members, its simply a matter of finding a center that will accept him.

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@pandaqty

@maxwell123 Thank you so much. I have joined probably 20 facebook groups and am actively interacting on there with questions. He has the option for a living donor transplant from family members, its simply a matter of finding a center that will accept him.

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Oh, that is very good. In case you didn't know, you can certainly apply at more than one center – although Mayo is certainly the best.

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@pandaqty

@rosemarya Thank you so much… I so appreciate your words of kindness and encouragement. I will be calling Mayo Clinic today and see about how to get him a 2nd opinion or direction from them.
From the week of 24 June till now, he has gone from nearly incoherent, to entirely cognitive, sharpening memory where he is even correcting me on certain things, able to use the restroom on his own, "hangry" as he calls his appetite, as well as gaining weight and muscle tone back from his significant weight loss (visible in his face). He is getting himself out of bed every morning and making warm lemon water to start the day. He has no swelling in his feet or legs. Yesterday evening was rough as he had dialysis, and was feeling nauseous for the first time in over a week. He has been off of pain medication as well, and his ammonia levels are way down. We have been doing an entirely plant based diet, which has brought his energy levels up, as well as his appetite and urine and bowel production up as well. I'm keeping him off sodium, and with his doctors permission, we started a supplement regimen of Milk Thistle, Dandelion root, burdock root, tumeric/black pepper, and a couple others which are known to help improve function. Prior to my leaving, his doctor was impressed (so much so, he teared up) with the improvement he had made thus far, and made note of all the things he was taking to include them in his chart and care.
I have my mom with me who is a certified holistic nutrition coach, who is helping me and supporting me as well in this time of separation. His parents are with him as well.
Because this is all such new territory to me, I'm unfamiliar with what improvement may be vs what is expected. For example, I love thinking that his increased energy and fight is a sign of improvement vs being bed ridden and incoherent.

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Hemodialysis can sometimes be difficult if they try and take off too much fluid (which they almost always want to do). It is important to get him to an expert nephrologist soon. If his kidney failure is acute you want to do the right things to help potential recovery and not cause harm from dialysis. The first few days and weeks are very important! Also, I would be very careful about using any supplements or herbs. While your doctor may say okay I think from what you've described he is most likely not a neph expert. I know you think they help but there is no medical evidence they do and they can cause harm. Search for reliable medical sites to see if they support the herbs you mentioned. If you can't find medical evidence, I would suggest you not do it or talk to an expert.

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@maxwell123

Hemodialysis can sometimes be difficult if they try and take off too much fluid (which they almost always want to do). It is important to get him to an expert nephrologist soon. If his kidney failure is acute you want to do the right things to help potential recovery and not cause harm from dialysis. The first few days and weeks are very important! Also, I would be very careful about using any supplements or herbs. While your doctor may say okay I think from what you've described he is most likely not a neph expert. I know you think they help but there is no medical evidence they do and they can cause harm. Search for reliable medical sites to see if they support the herbs you mentioned. If you can't find medical evidence, I would suggest you not do it or talk to an expert.

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By the way, I know all of this as a result of being on dialysis for three years and then making many lifestyle changes to come off and doing so without a transplant. I came off almost three years ago and work every day to keep from returning. A vegan diet was one of those changes that worked.

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@maxwell123

By the way, I know all of this as a result of being on dialysis for three years and then making many lifestyle changes to come off and doing so without a transplant. I came off almost three years ago and work every day to keep from returning. A vegan diet was one of those changes that worked.

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@maxwell123 Thank you so much!
Yes, his normal doc is on vacation for the week, and the doctor covering for him seems to want to be fairly aggressive about the dialysis, and made some inappropriate comments about why, in front of my husband to the nurses (The nurses asked why the change, what he was basing this change on, and the doctors response was "I dont know, I'm just guessing"). He hasn't had any side effects for a while, and yesterday was the first time since the 2nd treatment.
So far, despite his love for red meat, he is very open to the plant based/low sodium diet and it seems to be doing well in the short amount of time he's been doing it. I've done tons of research on the herbs, and they seem to support their usefulness. Also after speaking with a pharmacist about them, the Pharm.said that it would definitely not hurt to give it a try. I wanted to make sure of all this prior to trying anything with him as the situation is so intensely serious.

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@pandaqty

@maxwell123 Thank you so much!
Yes, his normal doc is on vacation for the week, and the doctor covering for him seems to want to be fairly aggressive about the dialysis, and made some inappropriate comments about why, in front of my husband to the nurses (The nurses asked why the change, what he was basing this change on, and the doctors response was "I dont know, I'm just guessing"). He hasn't had any side effects for a while, and yesterday was the first time since the 2nd treatment.
So far, despite his love for red meat, he is very open to the plant based/low sodium diet and it seems to be doing well in the short amount of time he's been doing it. I've done tons of research on the herbs, and they seem to support their usefulness. Also after speaking with a pharmacist about them, the Pharm.said that it would definitely not hurt to give it a try. I wanted to make sure of all this prior to trying anything with him as the situation is so intensely serious.

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Is he in the hospital now? I would sure get him to someone else for a second opinion as soon as possible. The early treatments for acute failure can impact the long term and frankly, my experience is that most docs want to over dialyze. There are formulas they all follow and often that formula does not take the sensitive nature of an early acute failure into consideration. Regarding the vitamins and herbs, I'm not sure a pharmacist is the person to ask. When the forum allows me to post links I will send you an explanation of the changes I made that allowed me to come off of dialysis (all okayed by my doctor).

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@maxwell123

Is he in the hospital now? I would sure get him to someone else for a second opinion as soon as possible. The early treatments for acute failure can impact the long term and frankly, my experience is that most docs want to over dialyze. There are formulas they all follow and often that formula does not take the sensitive nature of an early acute failure into consideration. Regarding the vitamins and herbs, I'm not sure a pharmacist is the person to ask. When the forum allows me to post links I will send you an explanation of the changes I made that allowed me to come off of dialysis (all okayed by my doctor).

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@maxwell123 that would be fantastic and MUCH appreciated!!
Yes, he is currently in the hospital in the palliative care unit…
I spoke with not just a pharm, but the dietitian that is assigned to him as well. She researched and found no issues either. I did do thorough due diligence on them

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