I’m Desperate for help

[Readdaily]

My husband is an active 81y.o. with CHF and Amyloidosis. He also has an enlarged prostate. His BP is well controlled and he has no history of diabetes. He currently takes:

Vyndaquel - Amyloidosis

Eliquis

Torsemide (water pill)

Finasteride (prostate)

Amiodarone (heart)

Potassium (heart)

Atorvastatin

Allopurinol

His Cardiologist saw that his kidney function began to decline 1 year ago and we were referred to a Nephrologist. The Nephrologist immediately told us that he will eventually need dialysis because he is stage 4. We were devastated by the news, but we have changed his diet and eat mainly plant-based meals to try to delay the need for dialysis; and to our surprise his labs were stable and even improved until this week. His labs have drastically gotten worse over the past 8 weeks and the doctor was so concerned and couldn’t explain why, so she sent us for an urgent Ultrasound to see if there was a blockage. The results showed no blockage and she is perplexed and asked us to call our Primary doctor and Urologist to see if they can figure out what’s going on. His labs that were out of range were:

bc-RDW 20 (normal 12-16.2)

bc-MCHC 30 (normal 32-36)

1BUN 53 (normal 7-18)

1gluc 149 (normal 74-106)

1alkphosi 129 (normal 45-117)

Creat 3.8 (normal .6 - 1.3)

GFR 15.166

Does anyone have a clue what could be going on??? We need your help and are desperate for answers. Sorry for the long post but I don’t want to lose my husband. I’m so distraught.

[bumblebee_tuna]

I'll be honest here, I think you need to start preparing for dialysis. Sometimes, it's nothing we can do about, the kidney function just degrades fast. Start educating yourself with the difference options, at age 81, it's usually hemo dialysis but it doesn't have to be. If he needs surgery it's better to do it preemptively, while he is still in good health, don't wait for the last moment. You never know when the kidney function might suddenly drop and then it's a trip to the hospital - try and avoid that outcome.

[Readdaily in reply to bumblebee_tuna]

Thank you for the advice. It’s just hard putting everything in perspective and setting the emotions aside. We were hopeful, but our hope is fading.

[Darlenia]

Sadly, I have to agree with the Bumblebee-tuna's advice. It's good to start preparing now for dialysis. My hubby's situation was a lot like yours...all was good, then suddenly they weren't. He crash landed in the hospital with emergency dialysis during the Covid pandemic. When I asked his nephrologist why it happened, he simply stated that "...sometimes kidneys just quit like that". The doctors at the hospital looked carefully at his creatinine and bun levels, drawing blood often. And his dialysis started with figures that are similar to what your hubby's is showing. I was like you, completely distraught. I couldn't eat, sleep, or drink. I lost a weight. When I finally got to see him (remember this was in the midst of the Covid epidemic), I was amazed to see him looking much better. His color was good, he walked fine, his memory was okay, etc. This happened to my hubby at age 70, so he was a senior citizen. I suddenly realized dialysis wasn't a death sentence. Dialysis is truly meant to improve life for people at any age. So, please try to put those worries aside. Unless they've occurred, they really haven't. Think positive thoughts if you can. And focus on one hour, one day at a time. Remember that only today matters since yesterday is gone, tomorrow isn't here, and only today exists. Please don't suffer now for those things that haven't happened. We care a lot about you. Please let us know how it all turns out. From one caregiver to another, sending you hugs and prayers.

[Readdaily in reply to Darlenia]

With eyes full of tears, I thank you. We just felt so alone. I’m so glad I found this group. Thank you so much for the encouragement.

[Darlenia in reply to Readdaily]

Please reach out any time! We're always here for you!

[Hawaiilover in reply to Darlenia]

Well said, I totally agree with you.

[Tolmezzo]

My God! Why scaring instead of encourage people. One result is not a sentence and BTW your hus is still far from dialysis. Keep healthy lifestyle, drink a lot, and wait with trust your next lab. Is not uncommon during summer do get dehydrated. Maybe you will have nice surprise. Rgs

[Readdaily]

Thank you.

[Bassetmommer NKF Ambassador]

Hi, So sorry and it is scary. I would suggest a medication review. I see he is on a diuretic and a potassium increasing med. Changing those up, might be beneficial to his kidneys, but it depends on why he is taking those. I would see if you can get him in for a fistula surgery now, instead of crashing into a catheter in his chest. Keep up the plant based; it will help. I was told I was going to be on dialysis within 6 months in early 2018. I changed up my diet and I am STILL not on dialysis, over five years later.

[Darlenia in reply to Bassetmommer]

Yes, have a permanent fistula or catheter placed now is good - it prevents emergency hospitalization, etc. Maybe dialysis can indeed be put off for a time if those waste figures improve. That would be ideal.

[Hawaiilover in reply to Bassetmommer]

I'm happy it worked for you. Everyone is different. I was healthy, exercised and ate healthy before I was diagnosed with CKD. I changed my diet to plant based after learning about it and did everything to try to delay it, but I couldn't. Last yr I ended up in ER with kidney failure GFR 3 and Creatine over 12. Was started on dialysis and was fortunate to get a transplant last December(5 mths after starting dialysis) my daughter was the donor. I am amazed and grateful for this wonderful gift of life she gave me. Take each day one at a time, do what you can to stay healthy, prepare yourself and try not to worry.

[Darlenia in reply to Hawaiilover]

It's interesting, isn't it, people often latch onto eGFR like its the holy grail. It's only a predictor. That figure really doesn't matter once kidney failure becomes real. (Like heart attacks, predictions aren't relevant anymore when its underway.) Anyway, I noticed BUN and creatinine (waste) hard data dictated my hubby's dialysis - when numbers wound up at critical or toxic levels, dialysis was brought in. Nephs took labs about every four hours as he was laying there. Your creatinine level of 12 was exceptionally high. Yes, everyone is biology is different. The decline can be very unpredictable; our world went upside almost overnight. I'm sure you're very happy with your transplant; my hubby is too.

[Readdaily in reply to Bassetmommer]

I will definitely take your advice about the medication review. I’ve often wondered if the long term use of these medications are having an adverse effect on his kidneys. The challenge is finding a doctor who will take them time to review everything he’s taking. It’s worth a try. Thank you for your post.

[Bassetmommer NKF Ambassador in reply to Readdaily]

Your phamacist can help with the review. He/She can tell you what is good for CKD or not and make a recommendation to your DR.

[bumblebee_tuna]

I'll repeat what others have said - don't worry too much and take one day at a time. Look into getting a fistula in place - it's a relatively minor surgery and if you don't have to use it, it's hardly noticeable. If things go bad you will be ready.

[Readdaily]

Thanks so much for the advice.