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 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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@pandaqty

@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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Tread carefully, and make sure that a qualified specialist (Nephrologist) is in the loop on all of this. Palliative care is a big deal and everything needs to be coordinated and correct. There is no quick fix, so your patience is required.

If you are reading online (FB or sites) be wary of any remedies, and avoid being led into sales by .coms who will want to market a product. . Look for the reliable resources with .orgs - like https://www.kidney.org or (NIH) https://www.nih.gov or medical sources like Mayo Clinic, Johns Hopkins, Cleveland Clinic etc.
How does this sound to you?

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@rosemarya

Tread carefully, and make sure that a qualified specialist (Nephrologist) is in the loop on all of this. Palliative care is a big deal and everything needs to be coordinated and correct. There is no quick fix, so your patience is required.

If you are reading online (FB or sites) be wary of any remedies, and avoid being led into sales by .coms who will want to market a product. . Look for the reliable resources with .orgs - like https://www.kidney.org or (NIH) https://www.nih.gov or medical sources like Mayo Clinic, Johns Hopkins, Cleveland Clinic etc.
How does this sound to you?

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@rosemarya yes ma'am, I have made sure that everyone on his care team is in the loop, and is coordinating and verifying. I completely understand there is no quick fix.
and I am definitely not buying into online gimmicks or facebook hacks. I am a skeptic by nature, and do nothing/suggest nothing without full transparency with his care team. I am constantly referring to medical journal papers, and reliable well known sources.
I would never do anything to put him in any further danger than he's already in.

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@pandaqty, I am thinking about you and your husband. How is he doing? Are you both still at the hospital? How about you, what have you learned about his future treatment and diagnosis?

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@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

@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 That is wonderful news to hear! Have the doctors been able to pinpoint what all happened and how he was able to turn around his health so quickly? It would be very educational for a lot of people to hear his story, I bet. I'm getting ready to move also, but it's not cross-country only 750 miles. But it is still very daunting. You're correct that stress can be a major factor in your health so you are right to be careful about all of that. Please check back with us and let us know how you are doing.
Ginger

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