Symptoms caused by ckd

[David79]

I'm wondering what symptoms people have from ckd. I'm 36 with a gfr of 23%. I've known that I've had ckd for about 6 years as its hereditary. I have been fine and felt fine unti about the last month. I've woken up with itchy skin & my legs aching. I am nauseous almost all of the time and I can not seem to stay awake. It's started to interfere with my daily life. I've tried diet change and I already exercise daily and take a multi vitamins. I guess what I'm looking g for is a way to feel more awake before I stuck being unable to work...

[Darthvadar]

Hi David...

I don't have Renal Failure (Yet, but who knows what may happen!).... My late mum had all of the symptoms you mention...

The itching was really helped by phosphate binders, and anthistamines... The chronic fatigue was a constant, I'm afraid... I found that ginger biscuits REALLY helped the nausea, so that might be worth a try... It can't do any harm anyway, unless you're sugar restricted... Thankfully, Mum was beyond working age, so that wasn't an issue...

Are you on dialysis???... Are there plans for you to go on dialysis???... Some people get great relief from symptoms once they start dialysis (or D as you'll often see it referred to on IHD)... I suppose the type of work you do is an issue to consider, too... Some jobs aren't really compatible with any significant illness/disability...

Sorry I can't help more!....

Regards...

Darth....

[MuddyGurl]

Hi David, what you are having are definite symptoms..but you are aware and so hopefully while annoying you aren't fearful.

WHat diet changes? did you have a low phosphorous/potassium diet already> lower meat protein?

I remember reading info on these symptoms,so have you googled on advice to help?

Have you looked at:
National Kidney Foundation.org, or AMerican Kidney Foundation, or DaVita websites?  all these public sites have info on diet and
 If you go to pubmed.org and also run a search for keywords it will bring up research done on the topics…I hope that can help.

I became a bit anemic, and fatigue bothered me, so I am now on 3x ferrous gluconate ( iron pills), which helped.  Plus I am doing more for very low protein non meat diet and supplemented amino acids to replace the meat, so it made a difference in my  energy within 2 weeks.  Right now I waiver between Stage 4 at 28 GFR to Stage 3b at 38..mostly when my diet improves, so does my function.

[David79]

I am not on dialysis yet. It seems like I only go to the dr to hear them ask how I'm doing. I'll tell them and then they explain I'm on the cusp of things. I don't get much information at all from them. I take binders and I also have a strict diet food is starting to lose its appeal though.

[David79]

I'm on a low potassium/phosphate diet. I've tried all kinds of things I'm supposed to be getting a shot for my iron soon. Praying it helps Ive seen kidney disease in my family since I was young. My dad and 11 of his brothers and sisters all have the same thing. I'm at the point where I just want to feel better for one day if that makes sense.

[justagirl2325]

Those are the exact same symptoms my husband had when he was at 22%.  The only other symptom was memory loss - he would be driving and not remember where he was going or we'd talk and he wouldn't remember calling me 5 minutes later.

He didn't watch his diet and his kidney functioned plummeted fast, like within a year.  His nephrologists would give him general advice but now that he's on dialysis he has access to a special renal dietician and he receives way more advice for diet.  Observing him it was hard to tell what was 22% or 15% or 9% - all the same symptoms all the time.  I guess they each got a bit worse but when he finally went back to the doc for a check it was 9% and too late to do anything.

I think the best thing to do is get yourself in front of a renal dietician before it gets worse.  They have the best advice at this stage.

[David79]

Is that something you ask your nephrologist about? Also should I consider asking for a access point for dialysis soon?

[justagirl2325]

That's probably where I would have asked (had I known then what I know now).  His nephrologist worked along side of two renal dieticians and I had never even heard of such a thing until after dialysis started.

As for an access point, I'm not sure how soon to ask.  Others may have better advice on that.  It wasn't suggested to him at 22% and was too late a 9%.  He had to get a catheter and still has that  and now a fistula 1.5 years later.

But it's not all bad news.  He's young too (43 now) and was off work for a year as he adjusted but he feels much better now and works full time again.  He's a bit crazy though - he's home renovating our kitchen this weekend on his spare time  

Dialysis made most of the symptoms disappear.  No more nausea, itching and sleepiness only after dialysis it seems.

[PrimeTimer]

My husband had the nausea and itchiness before he started dialysis. That seemed to subside once he started D and taking binders. With the exception of recently being in the hospital for an infection and a freak blood-loss incident causing severe anemia, seems he often has more energy than I do and he works full time. In the beginning, wish he had gotten his fistula created sooner. He had a chest-cath for a couple months while the fistula in his arm was maturing enough to be used. Can't remember what his GFR was when he started other than it was too late and he needed the chest-cath put in.

[Vt Big Rig]

I had everything you describe before starting dialysis.  Diet and binders as others describe help. Your tiredness is probably anemia. I was given a drug called procrit. You may be getting ready because insurance required iron to be tried first.

I would recommend you get a fistula installed.

[kristina]

Hallo David,
I am very sorry about the symptoms you experience, but I am afraid,
your body is trying to communicate with these symptoms,
that your pre-dialysis-days might be over ...  soon ...
... Whilst pre-dialysis, I also experienced an itchy skin and a feeling of a "dead-tiredness",
possibly, because all my other organs worked exhaustingly hard, to combat my failing kidneys...
... When I finally faced-up to my ESRF-situation, I saw the nephrologist and had my dialysis-access "installed" on my chest
... and it serves me well, because it leaves my hands free and I can continue (in my spare time) to learn how to play the piano ....
Good luck and all the best wishes from Kristina.

[David79]

I really appreciate all the information you guys. It's nice knowig I have other people to talk to about it.

[Michael Murphy]

David79, go talk to a renal dietician it is possible to delay the start of dialysis by several years with som diet changes, and believe me it's worth it.  The only advise I would give you now is to have a fistula created as soon as possible you will be glad you did, dialysis is easier with a working mature fistula.  I put off starting dialysis for several years, made my nephrologist nuts, but I did not want to start as long as I felt good.  It is possible to delay to long I started when I began to feel poorly in work.  I called the next day and told the nephrologist it was time for me to start.  People have delayed too long and ended up starting dialysis in the hospital as a urgent procedure.  Good luck I hope you get a few more dialysis free years. 

[David79]

Does anyone else feel like the nephrologist never gives you information?

[Michael Murphy]

The problem is that ESRD is not a black or white disease.  Every one is differant, everyone's body handle the symptoms differently.  My doctor felt I needed to start dialysis two years before I did.  He was not mistaken I was waiting for a sign from God it was time to begin.  The sign was a symptom, I finally became sick after lunch in work, I started the next week.  The best judge is you if you feel well keep keep on going.  Some people have deluded them selfs that every thing is alright and push it to far. And end up in the hospital getting emergency dialysis.  The doctor can't know how you are feeling.  So you need to work with the nephrologist and trust how you feel. 

[SooMK]

I really liked my nephrologists but I did feel it was difficult to get straightforward answers out of them. I learned a lot more from this site. I think a lot of it is because it's like Michael says--we're all different. I was wanting my docs to predict the future and I think the only thing they could predict with any certainty was that I would progress to ESRD and I was resisting that. With my kidney function getting lower I didn't have a lot of significant symptoms. I was tired sometimes, ongoing sleep issues, headaches sometimes, joint pain, a little queasy sometimes and frightened of the future--a lot of that.

[Athena]

Does anyone else feel like the nephrologist never gives you information?

Absolutely agree with that statement. They're very skilled at filling in the consultation time with as little information as possible. I have thrown them really technical questions occasionally and have seen that they don't know the answer. Some conclusions I've reached:

1. They don't really know half as much as they lead us to believe they do.
2. What they do know, they don't really want to share with patients, because:
3. The more they keep us in the dark, the less likely we are to demand more of them (there are also legal protections from this strategy).
4. We are much more easier to deal with when we reach the point of death (aka kidney failure) when we are too sapped to demand much from them & will readily accept any "crumbs off the table" by way of medical treatment
5. Many nephrologists, particularly the ones who really seem to care for their patients, end up being depressed - that renders them incapable of much empathy and why they remain unnervingly detached and desensitised to the suffering of patients.

I have heard similar things being said of oncologists as a matter of fact.

Patient on line support forums are great for sharing experiences and we can learn a lot from that BUT we can't change the fact that we are completely at the mercy of our Nephrologists at the end of the day. All roads lead to that Dude who has no real answers, otherwise phrased as "seek advice from your nephrologist".

[Michael Murphy]

One of the questions my nephrologist asked me was I angry with him because of my ESRD,  he told me patients become angry and need to blame somebody.  Since I was warned about my possible future by him my attitude has been it is what it is.  And I object to shoot the messenger response.  Since then my doctor has been more open with me.

[David79]

I'm not angry but a little information would be great. I go in explaine things to him and all I get is you're on the cusp of needing dialysis. My last labs were ok my gfr is at 23% but I feel like I've been running a marathon for days. My legs cramp, my chest feels heavy, my head is always pounding and I get sick every morning. I guess stressed is a good word for it my dad is no help his transplant was 17 years ago from my mom and he never really had issues with side affects. I think they moved him right in after they knew she was a match.

[Michael Murphy]

The most important thing is to have your blood work done to track your levels of creatne and phosphorous and potassium as long as those results are in the normal range you are fine and if you go to a renal dietician you may be able to keep those numbers good longer.  Again if you think your ESRD is progressing consider getting a fistula installed.  If you do and you end up on dialysis it will be much easier and healthier for you.  For the record Dialysis is not the end of the road.  There  is a life after dialysis and it can be pretty good. I worked full time for the first 2 years on dialysis and I only retired cause I was 63.  My advise is to eat a renal diet, install fistula, then let your doctor worry about it.  You will know when it's time to begin if you listen to your body.

[kickingandscreaming]

Why does everyone suggest installing a fistula?  There are other options, e.g. Peritoneal Dialysis (PD) that needs a peritoneal catheter and not a fistula.  I think the U.S. is stuck in the hemodialysis groove where there are other ways to go. PD is much more popular in other parts of the world and we are lagging behind.  Not all nephrologists are with the program yet, but if your neph offers PD then a PD catheter would be something to consider. 

In my case, I spent 8 years post diagnosis watching my numbers creep up or down as the disease inexorably progressed.  In 2009 my neph said I was in her 30% club.  Finally, a couple of weeks ago my kidneys crashed.  I did NOT have many of the usual symptoms:  no nausea, no loss of appetite, no headaches, no toxic feeling.  The only symptom I had was fatigue and loss of stamina in large measure from anemia.  And I developed some insomnia.  Fortunately, my neph doesn't play only by the numbers. She trusted my perceptions and reports.  I thought I was prepared as I had a buried PD catheter installed a full 7 months before it was needed.  But the catheter didn't work so when I crashed I had to go the hospital emergency route with the chest cath.  I also had pneumonia at the time and my hemogloblin was down to 7!  So there were many things going on.  Now I'm on in-center HD while I wait to get my catheter fixed (2 days from now) and then I can start my PD training in earnest--if all goes well.  They say "Trust in the Lord, but tie your camel."  Go as long as you can before starting Big D, but be ready with some form of access.

[Michael Murphy]

The reason for the fistula is that some PD patients end up in hemo for various reasons,  with a fistula that has matured you avoid the complications of a chest cath.  Yes I am a hemo patient but there are PD patients I have met in Dialysis because they were having problems and needed to go to hemo for several months.  Life with a chest cath ain't  fun.

[kristina]

The reason for the fistula is that some PD patients end up in hemo for various reasons,  with a fistula that has matured you avoid the complications of a chest cath.  Yes I am a hemo patient but there are PD patients I have met in Dialysis because they were having problems and needed to go to hemo for several months.  Life with a chest cath ain't  fun.

Hello Michael, could you please elaborate a little?
In my dialysis-centre there are quite a few patients with a chest-cath and I have not noticed any problems yet.
Is there anything about a chest-cath that could be problematic?
Thanks from Kristina.

[Michael Murphy]

Chest caths have a higher incidents of infection it's difficult to shower and keep them dry and you can't go swimming.  There are people who have been unable to have a fistula installed,  but CMS (the agency that sets standards for Medicare and Medicaid) rates centers on the percentage that are on fistula.  The exta hospital visits by cath patients costs the government a small fortune.  The one advantage is you don't have to hod after dialysis.  There is a nice guy several chairs down from me who was a PD patient had a infection and has been moved to hemo for 3 months.  Since he didn't have a fistula he has a chest Cath and is not a happy camper.  The other reason I think getting a fistula created is a goo idea, is if you are trying to avoid dialysis and are putting it off for too long you will end up in a hospital,  mostly from what I know they do hemo, and it's easier to be on hemo with a fistula.

[David79]

What are the differences between pd and hd? Are the diet restrictions the same?