when to begin Dialysis?

[Snowpeak]

my husband’s eGFR is at 13 and Cystatin C At 9.45. His Dr wants him to start dialysis yet he doesn’t want to, naturally. He says he doesn’t feel bad yet I think he has felt bad for so long that he doesn’t know. My question; can he wait a little longer? Drs fear a big ER event. Not sure if they are worried about his health or the $.

[Bassetmommer NKF Ambassador]

This is such a good question. I started too early because my doctor was pushing me. My attitude was terrible because I felt pushed. It's still to some extent. My GFR was supposedly 8 and my Cystatin was 11. I had no symptoms and was still working out at the pool. I did not feel bad and had no edema. My Neph's concerns were, and this is why I agreed, was that I was NOT uremic, and they wanted me to train when I was clear headed. Once the BUN level gets up there, confusion is an issue. But instead, I was so upset by it all that I had a harder time.

Things to think about in making the decision. Does he have a fistula. and how new is the fistula? Is he is going either to incenter or home. A too new fistula will make for a lot of problems. Is he doing PD? Make sure whatever your choice that you have seen the facility, know who is doing what and what is involved. Once you make your decision on type and place, then talk about how this is going to impact your lives and be prepared. Doing dialysis is a commitment from everyone in the family. All schedules will circle around it.

Look at his other labs. Is his potassium going up? That can be dangerous. Is his hemoglobin getting low? That will cause anemia. However, and I did not know this, dialysis will only make it worse. Then you have to take iron while on dialysis.

But the biggest thing is the mental. I struggle everyday with the fact that I have to do dialysis and I am not doing a lot of it. There are no words that I can say to you because it is not you going in the chair. It is a major lifestyle change. And for strong independent people who are not sick, it is very difficult, VERY difficult to accept. You can only support him in this transition.

What the doctors do not want is him to crash into dialysis. Some illness or event can cause this. And it is not predictable. What will happen if he waits too long is he will get a chest catheter if he does not have the fistula and that is a lot of work. Infection is a huge issue. And even with a fistula, when the body is depleted, say from an illness, and you go on dialysis, it is harder for the body to acclimate to the treatment.

Best of luck to both of you. Let us know how we can support you.

[Snowpeak in reply to Bassetmommer]

Thank you for your insight Bassetmommer. My husband's BUN level is very high, 80. He has a fistula in place - about 2 years ago. He is 76 years old and very fragile. He is not eligible for a transplant because of previous prostate cancer and other issues. Now his phosphorus is high and the Dr wants him to do a low phosphorus diet. I am sure this all sounds too familiar to everyone but we are entering this vortex

[Bassetmommer NKF Ambassador in reply to Snowpeak]

There's the reason and it is a good one to start. Thats a very high BUN. My BUN was in the 30's for a long time and then the climb started. It was up to 50 when I started dialysis. Normal high is 20 according to Medline. The climb was what concerned my Neph. Although slow, it could have accelerated. Also, my phosphorous climbed up too, but I am now taking Tums to help lower it along with the dialysis. My potassium was really getting up there, 5.8 and then 5.4 and the first labs done dialysis dropped that to 4.7.

Low phosphorous diet....hmmm that is hard because it is hard to find phosphorous quantity on labels. Things like chocolate, mushrooms, dairy and certain meats will have higher phosphorous. healthline.com/nutrition/fo...

Go see where he has to attend dialysis and get a bit comfortable with it. But it sounds like it is time. But let him come to that conclusion.

[Snowpeak in reply to Bassetmommer]

Thanks again Bassetmommer. Yes, it will be his decision but I like knowing the reasons from those who have gone before us.

[Darlenia]

My hubby went through kidney failure, dialysis, and later received a transplant (age 71). You're in a very good place since your hubby has an access (fistula) for dialysis. With that, they can simply start dialysis at any time. My hubby waited too long and was sent to the hospital on an emergency basis to get all that implemented and underway - a 5 day stay. You've prevented that from happening by being proactive. As it stands now, your hubby's situation can be handled on an outpatient basis. With hemodialysis (HD), they usually start patients out very slowly. My hubby tolerated it reasonably well. He looked and felt good afterwards! His appetite returned, his sleep pattern returned, etc. The easier and gentler form of dialysis is peritoneal dialysis (PD) at home but, since your hubby is probably too fragile to mange that process himself, it's a good decision to go with HD. It's definitely a great idea to visit the dialysis clinic that your hubby will be be using. In our case, the visit included checking in with the center's dietician which was nice. Familiarity takes away the fear of the unknown. Meanwhile, keep working with the diet to lower his phosphorus (sometimes binders are issued for that), and make sure he gets labs frequently to check on that and other values. Your hubby (or nephrologist) will let you know when it's absolutely time to start. As one caregiver (now care partner) to another, I understand the stress you're under. It's very difficult assuming more an more duties and responsibilities. Watching the decline is exceptionally sobering. You're very fortunate that your hubby has a fistula. That smooths the road ahead of you tremendously. In the meantime, enjoy today to the extent possible - tomorrow will take care of itself. And please stay in touch. We care about you and your hubby!

[Snowpeak in reply to Darlenia]

Thank you Darlene’s for sharing your journey and insite. It helps so very much.

[rabbit01]

My advice would be to start as soon as you can if he is going to do PD. His native kidney function will hang around longer the sooner he starts PD.

[Snowpeak in reply to rabbit01]

Tk you for your advice rabbit01. My husband will be doing HD. We decided that quite a while ago. As his caregiver, I am not strong enough to handle PD for him.

[rabbit01 in reply to Snowpeak]

I can understand that. I do PD and to be honest it's a heck of a lot of work. It's not just doing the PD it is the stock checking and ordering and storage. Spent most of today carrying up boxes of fluid and supplies from downstairs to our bedroom where I keep a small stock for immediate use.

[Hidden]

I've always been one to accuse the medical community of putting $ in front of patient care. In this case though, I would say dialysis is a good choice at this point. If your husband is healthy enough to handle surgery and strong enough to lift 5000 ml bags of dialysate, then he should consider PD. You are probably right about your husband not realizing that he is actually worse than he feels. Bassettmommer points out a lot of detail in her response but here it is in a nutshell. Your kidneys filter out toxins and waste from your bloodstream. When that filtering isn't happening, that waste remains in your body affecting muscles and organs. I think of it like changing the oil and filter in your car. Getting all that sludge out of there. I also think the longer you let it go, the more permanent damage you may have done to parts of your body. I know because my body is a wreck.

[Snowpeak in reply to Hidden]

Thank you for your advice LLWegeners. My husband will be doing HD. He meets with his Neuphrologist on 1/3/24. I will let everyone know how things go.

[Bunkin]

hi my bun was 112 and GFR was 2 when I started PD and I felt pretty good even then except I was tired. Praying for y’all to know what to do. I went by how I felt. Fortunately my doctor knew exactly when the right time was

[Snowpeak in reply to Bunkin]

Wow Bunkin, you really were able to wait a long time to begin PD. Good for you! Glad you also had such a good Dr. Hope you are doing well with the PD. Thanks for your input.

[MPJ1]

After my nephrectomy, my gfr was 13. Dr wanted to me to start dialysis, but I felt good and no other health issues. It’s been 18 months and I still hover between 13 and 15. I’m on transplant list, may have to start dialysis but not yet.

[Snowpeak in reply to MPJ1]

Thanks for your reply. Hope you get a transplant soon.

[Tkt3699]

START! BEFORE my total thyroidectomy I was at 17, after surgery I was at 10. I felt kind of bad, had twitches.... my nephrologist said it was kidney's.

[hope1419]

Check this othwr thread for more responses. healthunlocked.com/nkf-ckd/...