What we're the physical symptoms that told you it was time to start dialysis?

[ILMA54]

I had a nephrology appt today. Albumin dropped from 3.2 to 3.0, largely because of family stress issues that caused me to lose my appetite. GFR 11.

How did you know it was time to start dialysis? What physical symptoms were you experiencing?

[RonZone]

Hey, I"m about in the same boat. I'm at 13% I'm told, but feel fine other than being a bit tired. I've read all the symptoms online like backpain, metallic taste, loss of appetite, fluid retention, swelling in the ankels, etc, but I've not had any of that yet. I went to a class on dialysis and the lady teaching the class just said "you'll know". I know people lose kidney function for a lot of reasons, some after a heart attack, etc. Mine is because of Polycystic Kidney Disease, which runs in my family and that has slowly progressed to this point over the years, so it could be different for each kind of loss. So I hope others will chime in here and give us some info that matches your situation and mine.

[WYOAnne NKF Ambassador]

For me, I started dialysis just 6 weeks before I got the call that they had a kidney for me. But

I was retaining fluid. Some days I would hardly pee. I was tired all of the time. I didn't have an appetite. I was getting Migraines every couple of days and was vomiting almost everyday. Dialysis made a big difference for me.

[Jayhawker in reply to WYOAnne]

After being in renal failure for just over 3 years but not yet on dialysis, I’m finally beginning to experience a few symptoms.

I’ve begun to have a metallic taste in my mouth about 2 days a week. I’ve just, over the past two weeks, begun experiencing nausea and have vomitted twice. I had really severe flank pain last Fri and Sat. I honestly wondered if it was a kidney infection. But then it went away Saturday afternoon without medication. Obviously, not an infection. I’ve had no real appetite for the past two weeks. Of course, I’ve got severe anemia anyway so am not noticing anything out of the ordinary on that front. But my concentration is lower than normal.

My next nephrologist nurse practitioner appointment is Feb 14th. But I may message her through the patient portal to share these symptoms this afternoon. I had hoped I’d manage to get through one more semester on campus before it would be time to start. But, clearly, that may not work out. I don’t yet have a PD catheter placed. So if that’s done within a week they might be able to start the training over our spring break on campus—March 9-13.

Regardless, it “feels” like it may be time. I’ll have labs run next week. I had been holding steady with eGFR 15-17. But this is definitely feeling different. However, I really want to see my labs. I guess it may also be possible that this is a flu situation.

It’s a challenge to know. My nephrologist has said several times that if he waits too long, I’ll feel a lot better, but if he starts me too early, I won’t feel any better...

Anyway, this is the first time I’ve felt as though it may be time for me to get started on dialysis.

Jayhawker

[Cave2 in reply to Jayhawker]

I was stubborn when they told me I had to start dialysis I was walking around with no kidney function and made me so ill but when I did start dialysis I felt so much better been on it ten years now and I'm stable I dialysis at a unit 3 times a week it sounds to me like your ready for it now I no it's hard to start dialysis but trust me you will feel better in the long run hope this helps a bit

[Jayhawker in reply to Cave2]

I’m actually not balking at starting. My data has been quite a lot higher than when they typically start patients on dialysis. I’ve also been feeling pretty good and definitely functioning pretty well.

But there has been a notable change over the last two weeks. I’ve got renal panel labs scheduled for next week. I had thought I’d hold off until that data was back. But when I got up this morning I found myself thinking I should likely contact my nephrologist’s office.

Of course, I’d prefer that this fit around my job; I’m a university professor. But my mom would literally shake her head hearing me say that. She used to say that I organized the family while still in utero, before I was born. I’m sure she’d be more than a little amused to find that I’m still attempting to impose order and schedules on everything as a women in her mid 60s...

Anyway, I’ve decided to call my nephrologist’s office after lunch today. It may be a “false alarm” but I’d rather check in with them.

I’m glad this forum popped up today!

Jayhawker

[Jayhawker in reply to Jayhawker]

Okey, my nephrologist’s office said to keep my labs as scheduled next week. They’re thinking this may, in fact, be a stomach bug that’s going around. So, I’ll get labs on Feb 6th. We’ll see where they come in as well as how I’m feeling over this next week. If it does appear to be PD dialysis time, they’ll get me scheduled for PD catheter placement. It will then be several weeks for the catheter entry site to heal sufficiently to begin training.

But I’m still in a holding pattern on all of this for the next two weeks, apparently. So I guess I’m going to be in what I call “hurry up and wait” mode for the next two weeks🐶

Jayhawker

[ILMA54 in reply to Jayhawker]

Probably a good idea to hold off for a couple of weeks. I did my blood work with a UTI and remnants of a good, and it was my worst blood test result. The big drop in albumin was attributable to not eating, but now I have another six weeks to wait to see if they start me on dialysis to avoid getting to weak for a transplant.

[Jayhawker in reply to ILMA54]

Yes, that’s the issue with me too; maintaining strength for a transplant. Of course I do realize how fortunate I am to have qualified for a transplant. Naturally I’m doing, and will continue to do, everything needed to remain transplant ready as I wait for a deceased donor kidney to arrive.

Many aren’t fortunate enough to qualify for transplants. Thus, I’d never either complain about nor balk at starting dialysis...

Frankly after being in renal failure for 3 years but not placed on dialysis it will actually be somewhat of a relief to finally get started with dialysis. Fear of the unknown and endless waiting does wear one down eventually; at least that seems to be the case for me🐶

Jayhawker

[Hidden in reply to Jayhawker]

I know how you feel there, my kidney function has been a slow and steady decline for 10 years, but the symptoms are getting worse for me now at 10%, nausea throughout the day, very low appetite, and very low energy level in general. Definitely wanting to sleep more but also more restless now. I had my dialysis assessment appointments to choose which home dialysis care I want. Definitely choosing peritoneal dialysis. The home-hemo equipment needs the space a small room and 8 weeks of 3 days a week training at the hospital (45 min drive one way)....whereas the peritoneal dialysis is much smaller, the blood cleaning machine is a small suitcase and less overwhelming and easy to learn, just one week of training at the hospital. The catheter placement seems straightforward, but I need the ultrasound first to ensure there will be no issues with the catheter placement. The main 2 things that I do now that I will not be able to do, is soak in the tub to relax, I love my baths, but no more baths or swimming. And then not having my door open at night, for my 3 cats to roam freely, I have never been a door closer so that will be a big adjustment for me and the kitties. But honestly now that I have this info and feeling the way I am, I look forward to starting and hopefully feeling much better than this! Doc says within 6 months he thinks I will need to start but he hated to guess because he said he usually guesses wrong. Oh ESRD is so

super fun, isn’t it? Waiting to get a bit sicker every day is draining and frustrating to say the least especially when dialysis is completely expected. But we just gotta keep focused on that little light at the end of this dark tunnel. Blessings to you jay hawker and I hope your labs are good tomorrow!

[Bunkin in reply to Jayhawker]

Right there with you😊

[Jayhawker in reply to Bunkin]

I’m hanging in there; feeling better this morning. No nausea last night. Slept really well. Just sinus congestion and a sore throat today.

My nephrologist’s office is very likely right; I may have picked up the bug that’s been making the rounds. As the nurse said, “After all, people with CKD do catch common colds. Not ALL symptoms are related to your CKD.”

This morning it’s seeming very much as though she was right with her educated guess (or diagnosis) yesterday afternoon. Actually, that would be great. It would give me a chance to make it through another semester on campus without needing to start dialysis.

Of course, if I COULD target a start date for dialysis, it would definitely be summer due to my work schedule. My second choice would be semester break (between fall and spring semesters), Our campus has a 5 week break between semesters. If the catheter was placed in the final few weeks of the fall semester, I’d then be ready for training pretty close to the beginning of semester break.

But, there I go again, trying to impose a schedule upon something over which I really have little if any actual control🐶 This is ridiculous...

My mother was right; I’ve got to let stuff like this go!!!

I’m taking my dog for a walk🐶🐶🐶

Jayhawker

[Bunkin in reply to Jayhawker]

You’re blessed to have a nurse that helps you. My nephrologist nurse is pretty much useless. Enjoy your walk!!

[Mj1965 in reply to Jayhawker]

Hi Jayhawker MJ1965 here. I've just read your post,, sorry to hear you're not feeling to good. I just wanted you to know when my GFR was 15 -17 I had the nauseaeven though I didn't vomit, the lost appetite and really bad muscle cramps. I was given protein shakes and quinine tablets for the cramps. My GFR was 10 when I started dialysis in 2016 Now its 8 I'm back on the shakes as my appetite is up and down. I've been on the waiting list for nearly 2 1/2 yrs. Hopefully I will get a kidney soon. Best wishes to you.