to many signs of ckd

[BRANDY]

I may be rambling but here I go. I am 21% GFR, creat. 2.48 as of now.  My question to dialysis patients is.   Did your hair start falling out and your nails didnt grow well at all. Itch at times  not always.Foamy or bubbly pee. Back hurt . cant sleep good  without sleeping pills.  ?Get tired at times during the day.  legs hurrt when walking.  these are my main complaints. Can anyone answer these questions at the time they were 21%  did all this start with them    Please reply  Im going nuts with all this. the  blooming idiot  waving   Hehehehehe






EDITED:Fixed smiley tag error-kitkatz,Moderator

[MIbarra]

yes yes, yes, yes... itch, itch, itch I did.. still do actually, back hurt, tired always, couldn't sleep -- but didn't have to resort to sleeping pills... This is CKD!   It sucks.  I feel your pain.

[G-Ma]

yes, I had all this when I was on kidney failure and not on dialysis yet...the itching is gone and so is sleep tho...This months alone I have tried 3 diff rx for sleep and don't sleep more than 2 hrs a night.  Can't take Benadryl because of glaucoma. Ache quite often.  Hope you can get all this under control.
Ann

[monrein]

Yep, sounds like familiar symptoms although for me personally the worst is the metallic ammonia breath that almost burned my throat.  Dialysis usually helps although of course it takes some adjusting.

[Romona]

Yes. You are not alone. 
Welcome.

[graftgurl]

I had every one of those symptoms. The worst were the sleep problems and the burning in my legs when I walked. They felt like I had run a marathon and I was only walking to the car 
Hang in there.

[paris]

I am around 14% and I can answer absolutely YES to every thing you listed.  I always had great nails, thick hair and tons of energy.  Now, split and peeling nails, thinning hair, and would love to not get out of bed.   It helped me greatly to find out here that this is all part of kidney disease.  I knew I wasn't making up symptoms or going crazy.  I have learned more from the great people here than from the doctors.   

[Sunny]

Yes, these are all symptoms I have and more. This site and a little on-line research will help you to identify and learn to deal with kidney failure as best as you can. Doctors are not always the best information providers. You can learn how to live with what little remaining kidney function you have. I have for 7 years. Best of luck.

[BRANDY]

Thank you for all of your replies, it does help to know I am not just imagining these things that are happening. today I got nauseas 2 times  I havent been doing this   I usually have a good stomach.  I am trying to see a renal dietician,  appt was cancelled by her , now waiting for new appt.  I am going to demand a close appt tho.  I need to try and keep what little function I have   Ive already been told this.  thanks to all of you great people on this forum.  If it wasnt for this and Davita website I wouldnt know near enough about CKD . 

[monrein]

Consulting with a dietician is a really good idea.  To start with, you need to reduce your protein intake to very little.  I was doing three ounces a day pre-dialysis.

[Deanne]

 

I'm at about 25% function and have some of that. My legs get horribly itchy in the winter. It's better with lotion, but they still itch badly. I've scatched them before until they've bled and they'd still itch. I'm always tired. I get at least 8 hours sleep / night but I'm ready for a nap right after I get out of the shower in the morning. I don't have trouble getting to sleep, but I don't think I sleep as deeply anymore. I have to get up a couple of times most nights to pee. Leg cramps are common and I need to be careful about how I move / stretch when I first wake up so I don't trigger a cramp.

I don't think as clearly anymore and I don't remember things. Last night I was trying to count the number of characters in a line of text (50-character maximum) and I couldn't do it. I started re-counting a half dozen times and kept getting lost before I got to 25. I work full-time and sometimes I have trouble staying focused at work.

My nails seem good yet, but then I don't grow them out, so I don't know how well they'd do long. I think my hair has thinned a bit.

[paris]

Brandy, I also have the nausea.  My weekly routine seems to be: can't sleep for 2 or 3 nights in a row (even with Ambien) then vomiting for 2 or 3 nights, and then maybe decent nights sleep for a couple of nights(with Ambien).   This has gone on for a couple of years.   But, my lose of kidney function has slowed during that time.  I think I am just use to my stupid routine.  I envy those who can get a good nights sleep.   Hope you can meet with the dietician.  Like Monrein said, watch your protein intake.  And keep asking questions!

[Razman]

Watch your  protein and potassium  but  also get the doctor to tell you what your hemoglobin is .  You may have to start getting EPO  shots .  I  started giving myself shots when I was  still at  28-29 %.  It can give you more energy and improve your thinking/memory.

[willieandwinnie]

Brandy, your numbers are pretty good so far. I have to agree that you need to watch your protein and potassium intake. Maybe try drinking small amounts of cranberry juice to help flush your kidneys. You should be checking in with a good Neph and they should have you seeing a dietitian that can help you with foods and portions. Please let us know how you are doing. 

[Rerun]

I may be rambling but here I go. I am 21% GFR, creat. 2.48 as of now.  My question to dialysis patients is.   Did your hair start falling out and your nails didnt grow well at all. Itch at times  not always.Foamy or bubbly pee. Back hurt . cant sleep good  without sleeping pills.  ?Get tired at times during the day.  legs hurrt when walking.  these are my main complaints. Can anyone answer these questions at the time they were 21%  did all this start with them    Please reply  Im going nuts with all this. the  blooming idiot  waving   Hehehehehe






EDITED:Fixed smiley tag error-kitkatz,Moderator

Yes.  Add puking all the time!~

[Restorer]

Vomiting, sleeping 18 hours a day, getting wiped out climbing 2 flights of stairs. Intense itching and dry skin that started at my legs and progressed up to my back and arms over a year. Leg and foot cramps at night. Ammonia breath on and off (when it got really bad, I could hardly talk because breathing my breath back in was like inhaling from a cup you just filled with soda). And of course the constant diarrhea, an adaptation to keep my body excreting just enough waste.

[BRANDY]

Just an update  I am scheduled for an appt the 14th of Nov.   Thank you to all who replied. I needed that really bad.  I can see what is happening and want to slow the process down but need to know what and how to eat right.  I look at food and say to myself can I eat this or not.  I am staying off pot.,salt  and lower amounts of protein. also when you start hemo  do you gain weight.  can you eat as much of something you want or are yu restricted to the amount. just wondering  I hear you all say it is a strict diet  but dont know exactly what that means.  I uess I will find out soon enough.

[Lucinda]

Hi Brandy.

My bloods fluctuate dramatically from month to month.  Don't ask me why.  Every month I get ready to start dialysis and then my creatinine comes down and I get another reprieve.  At the moment my creatinine is 5.2 and GFR is at 20%.  All the symptoms you have mentioned I have or have had.   Hair fallling out, Nails peeling they are so weak, not sleeping and legs hurting.  The latter two were helped when I started doing regular exercise and that is when my creatinine level dropped again as well and my blood pressure.  I have been in Italy the past three weeks and have eaten all the wrong foods but because of the amount of walking and travelling we did I didn't put on any weight but I overdosed on tomatoes and salt so my blood pressure was horrific when I got home so diet does make a huge difference.  I have been told by my neph that I will probably lose weight when I start dialysis. 

I have pretty obvious fluid retention problems which is evident in my legs, face and around my eyes and she expects I will probably drop a bit of fluid weight.  I can't stipulate enough though how much better my body, mind and spirit have been since I concentrated on diet and exercise.  I had long hair which I just recently cut to about an inch all over.  I thought I would hate it but it actually makes me look a lot healthier not to have thin wispy unhealthy hair around my face.  I know it feels a bit disconcerting to see the first signs of the disease in your mirror every morning and feel the first effects but if you look at everyone else on this site, many seem to have lost the puffiness once they have started dialysis.  Correct me anyone if I am wrong but I don't believe that dialysis will make you put on weight if you are following a healthy diet.  Zach is a pretty good example of staying in shape when on dialysis.  You should take a look at some of his posts about diet and exercise. 

I am now a strong believer that getting into a routine before starting dialysis would be a great standby for when I do start.  Discipline with routine is really important when you start so getting disciplined with your exercise and diet now will be a great help to you when you do start - and it could help you put of the inevitable.  I have had my graft in for over two years now and the expectation was that I was to start dialysis six weeks after I had my access done.  Every month my neph says "next month" and then when I go back my blood pressure and bloods buy me more time.  When I got home on Thursday I got straight back onto my diet and as I was unwell when I returned I was unable to exercise but I am going back to the gym today.  I don't have my next appointment until December 19 and I want to get my blood pressure down and more weight off before then.

I have been one of the lucky ones that has had time to organise myself before I start dialysis.  I have my house ready for home nocturnal dialysis and I have left my job and I am starting a property e-magazine that I can write at home in my time or work on it while I am on dialysis.  Being tired during the day is not unusual when you are approaching end stage renal failure and not being able to sleep at night is a pretty universal problem as well.  Try putting a hot wheat pack at the back of your neck when you go to bed.  It tends to make you feel drowsy.  Again the exercise really helps with a sleeping pattern.  I have jetlag at the moment and can't get off Italian time but I slept really well while I was there because I was walking and climbing stairs all day and I feel into an exhausted sleep every night for eight hours - bar the half dozen bathroom calls.

I hope this has been some help and I hope all goes well at your appointment on November 14. xx

[BRANDY]

Lucinda thanks for your reply  I understand now that I need to start a exercise program of some kind   I have been disabled for 8 yrs  and mobility is hard at times  all of spine hurts   I am wondering tho if part of it isnt related to CKD  my mri shows ok   but I hurt awfully.bad at times.I will work on the exercise tho. thanks for taking time to explain .

[Deanne]

Do you think you could try aqua aerobics? I did this when I was on a high dose of prednisone a few years ago. One of my side effects was severe muscle wasting. I could barely walk and remember unloading groceries in the car and carrying them in, one soup can at a time because that's all I could lift. I could do aqua aerobics pretty well though because the water supported me. I'm sorry you're in such pain!

[monrein]

That's a terrific suggestion Deanne.  I had a spinal surgery a few years ago and the thing that really helped me get back to myself was working out in a pool using foam dumbells.  I "ran" the lengths of the pool and besides the actual exercise it was so nice to feel that I was at least doing something.   

[BRANDY]

Yes water arobics would work for me but I cant afford it.    I have another question , does circles under eyes   Only one, have anything to do with ckd.  It just popped up this morning.  Also  where do I find out about  kidney donor info  and what to expoect  and how it is paid for.  How do they match you and donor. 

[BRANDY]

Well I seen my new dietician  and really wasnt impressed with her. As it seems I am eating the right foods  I really didnt learn anything  that I didnt already knew  ( thanks to all of you guys)I have done alot of research on the matter.I did have blood work done aagain Im really anxious to see what they are now , as I feel like they arn"t as good as last time  a month ago  I dont feel very good .  It just hit me as Im typing  it sure feels good to pour it all out   as my boyfriend doesnt rellly know what Im talking about   he is ready to go on diet with me   but I tell him he doesnt really have to do that .     Thank you for being here for me    I really do appreciate  alll the knowledge you guys give me.   You are just as impotant as my Neph.  thanks  I will quite rambliung now   I GOT IT OUT

[Sunny]

It always feels better to have someone to talk to so you can get it all out. That's why this is a good place.
I hope your blood test turns out o.k. and it's nice to know you seem to be following the right diet. Knowing what to eat will make a big difference.