LIVING WITH DIALYSIS-NEED ADVICE

[dkesterson1]

As I stated in previous posts, my husband 74 has been on dialysis just over 1 year. In the last 2-3 months his legs have really gotten weaker. We first thought it was because of poor circulation, then he had an MRI of his lower back and they found a pinch nerve at L4=L5 plus spinal stenosis. but not bad enough for surgery. So we set up for him to go to Physical Therapy. At first we thought it was helping but the therapy seem to stir up other issues with his kidneys, so he stopped therapy.

Also in the last week he has been having acid reflux every night. He sleeps with 2 pillows, Most all the over counter medicines are harmful for his kidneys. I don't know what to do. He also has diarrhea not everyday but quiet often. I figure it has to do with all the medicines he has to take. We told his Nephrologist but he just said that is really odd for him to have diarrhea so much.

He also has restless legs syndrome which his doctor put him on Ropinirole which didn't help his RLS at all, His doctor finally put him on a low dose of gabapentin which seems to be helping but I've notice since he's been on it he is having some memory issues.

I just don't know what to do for him. Are any of you experiencing these symptoms and what are you doing for it to help you? I'm sorry if I just went on and on but any info you can give me I deeply would appreciate it.

[Beachgirl32]

I’m sorry your husband is having such a hard time. I don’t really have any of those symptoms I used to have the opposite when I was on PD dialysis I always was constipated. I don’t know what type of dialysis your husband is getting PD or Hemo is he getting enough of dialysis? I know when I was on PD they never could get my prescription right I am on Hemo right now and I feel a lot better. I know I take Tums as a phouros binder which was by my kidney doctor for me to take, I know you just have to not take so many because of the calcium thing get high but one before every meal is OK if his phourous is OK and the doctor just put me up to two but ask him doctor that may help with indigestion.

[dkesterson1 in reply to Beachgirl32]

Thank you. I meant to say he is on PD..

[Darlenia]

I really feel for you. I'm an older lady who took care of my husband as his kidneys gave up and he was thrown into dialysis. While on PD, my husband had diarrhea too and felt sickly. So he stopped using Miralax. The situation quickly improved and he stayed off all laxatives thereafter. (My husband is rarely, if ever, constipated.) You mention OTC meds harming your husband's kidneys, but my husband's kidneys were very low functioning, if at all, so we didn't worry about that very much. We did know to request medical approval regarding the dosages of all meds since dialysis doesn't effectively remove them from the blood stream. My husband also contracted a very itchy rash and RLS. That also weakened him a lot. He didn't sleep well, stopped driving because of it, and so on. His memory suffered from that to some extent. For the RLS, we used exercises at home that we found online and he rubbed a lot of "icy hot" on his legs, etc. Both helped a little bit, but not enough. For the rash, I sprayed his back and shoulders with Dermoplast. But while that helped somewhat, it too never went away. Then, he was blessed with a kidney transplant (at age 71) and all problems disappeared. It's extremely hard, as caregivers, to see our husbands struggle and lose momentum. Many don't understand how lonely the journey can be. Sending you lots of encouragement that you and your team will turn it around. Sending lots of hugs your way.

[dkesterson1 in reply to Darlenia]

Thank you so much. We are trying to get on the list but it's taking forever. He's got 3 more test before he can even see surgeon and then it goes before committee. I understand why they say people die waiting to get a kidney. It takes them forever to all the testing and evaluations. He's B+ blood type so it will take sometime to get one if he even gets on the list. I'm glad your husband is doing well.

[Darlenia in reply to dkesterson1]

Keep at it! My husband agreed to consider a kidney with a few issues and the center found one very quickly. My husband has blood type A, so it likely will take a bit more time for your husband with type B. We were given a deadline of 3 months to get all the testing done. And we were required to do so on our own - find our own gastroenterologist for the coloscopy, our own cardiologist for the scans, etc. Interesting how different centers have different protocols. The nice thing is that your husband's time on dialysis counts - placing him higher on the list I'm crossing my fingers that it happens sooner than later. Stay positive!

[Betnir in reply to Darlenia]

Glad to hear he had a kidney transplant at age 70. It gives us seniors a lot of hope. I truly hope his last few years will allow him to enjoy his life and his freedom to travel.

[DanaFarber]

can he get a cortisone shot in between the vertebrae? That can help a lot

[dkesterson1 in reply to DanaFarber]

The Neurosurgeon said since he has ESRD he can't get a steroid shot.

[bumblebee_tuna]

Phosphorus Binders can cause diarrhea, but it usually goes a way after a while. You can ask to switch the binder, there are a few different options.

Regarding RLS - Yes gabapentin or pregabalin have side effects, those are strong drugs. I was on them and came off because of side effects. I now take low-dose opioids which work well but it's a pain to get a prescription. There is a very active RLS group on this website you might want to check (run by RLS-UK).

[wendyshyersayles]

Hi, my brother is 72 years old and is having many of the problems your husband has. I don't have much to offer yet in ideas, but hope to learn. One thing, you are not alone. His eye sight is now very bad so I'm trying to be his eyes and ears

[Dialysis_Saves]

How are his bicarb levels? I oresune this might be low and due which your blood tends to be more acidic and do the other issues. I take Nodosis 400 mg 3 times after food for quite some time now, which has brought down my acidic levels and all the stomach irregularities. It would be good to see his latest blood reports. Stay strong, God bless....

[chia1cdef]

I am 75 and have been on dialysis since December 2013. My phosphorus binder is calcium acetate. My activities are also slowing down. Luckily I am a heavy reader. It keeps my mind sharp and have tried to exercise more, which is walking.

I have soft knees. My doctor suggested that I strengthen my leg muscles. It might help if your husband can hire a couch on it. 

[dkesterson1]

Thank you all for your information.This website is so helpful. The best advice is from you who are going thru dialysis. God Bless!