Feel Like I'm Dying

[BattleScars]

I've been a PD 2 years now and I feel 1000 times worse than I did 2 years ago. It seems to be getting worse by the day. I have so many symptoms that I can't began to explain them all but I feel like I'm 80, not 39. It's to the point I can barely function just to do the normal every things that we all do. Going back to work? That seems completely out of the question at this point. But I'm too damn young and poor to retire. This isn't what I want for my life.

Lately I've been so tired I can barely move. My wife is sick with a really bad cold so I attempted to make her dinner last night. Nothing complicated, just chicken noodle soup out of a can and a grilled cheese sandwich. It wiped me out. I could barely do it. I had to sit down as if I ran a 5K marathon. Lately I've been getting strange muscle cramps. I just turned to the side to look at something and my entire left rib cage cramped up bad. Never had that before. If I yawn I get extremely painful cramps in my chin. What the hell? Restless legs? I've had that forever and it's almost torture. Itching? Yep. Trouble concentrating? All the time. Memory problems? Feel like I have early Alzheimers. I get weird pains. I feel like I'm falling apart.

My labs are OK except for my phosphorus. Every time I think I have it down it jumps back up. I'm religious about taking my binders. I know my diet is exactly renal friendly (like I eat pizza at least once a week, I eat nuts, cheese is my weakness.) I don't know if I cut all that out if my numbers will be better but the renal diet is so restrictive I feel like I can't eat anything hardly. Don't worry, I can stand to lose about 60lbs so maybe that's a good thing.

My wife told me to call my nurses but I've been over this with them so many times before. I don't know what to do. I'm not saying I want to end myself at this moment but I do wonder what's the point if this is my life now. Today I had a major dizzy spell and couldn't even drive myself home. Now I'm afraid to even leave the house. I'm feeling really defeated and down today. Anyone else get like this? Any suggestions?   

[okarol]

I have no answers, but feeling bad for you.
How is your KT/V? When did you last have a chest xray? You might have hidden fluid.
It doesn't sound like you are getting adequate dialysis, but I am no expert. What do they say about your fatigue and symptoms?
Sending you hugs and best wishes for better health. 

[noahvale]

*   

[CebuShan]

I can relate! I go through "spells" when I have zero energy. Just getting from the bedroom to the living room is an adventure! I would definitely talk with your neph about this. If the nurses can't come up with answers...
As for the Phos. I follow a renal diet BUT if I get a craving for something, I have it! When I have too much phos., I'll itch all over! That is when I know to pay closer attention to what I'm eating. So far it has worked, my labs are in the normal range (I do struggle with albumin. I can only eat so much meat!)
I hope you are having a better day!   

[amanda100wilson]

I have little respect for Kt/v as a measure of adequacy.  When I was doing PD, towards the end, I was feeling just as you do, despite my Kt/v indicating otherwise.  Have you had a PET recently?  Has anything changed, such as loss of residual renal function?  Have you had any issues with UF?  could you switch to home hemo?  It transformed how I feel, and although it is more onerous, it is better than feeling as if you are twenty or thirty years okder which is how I felt for the last few years that I did PD.

[cdwbrooklyn]

Hi Battlescars,

Based on my experience, it sounds like you are taking off to much water which will cause the cramping.  Also, cheese does higher your phosphorus.  I love cheese also but have to stop eating it for at least one or two months.  My phosphorus went down from 6.0 to 3.9.  Also, red meat has a lot of phosphorus as well so you probably want to cut down on that to if you eat it.   As for me, I will eat cheese for one month than stop eating it for the next two months than pick it back up again for one month and stop eating it for the next two month. It seems to work well for me.  Yes, it’s hard at first but you will get use it and it becomes very easy should you want to use my method. 

As for camping, try to leave on ½ to 1 pound of water.  Your body needs water so doesn’t take it all off because your body will start to take it from your muscles, which at times can be very painful.   

Do you take any vitamins?  It will help give you some energy.  You can talk to your doctor to see what type of vitamins you can take.  Also, are you skipping treatments and/or cutting time? If so, that to can cause you to be weak.   

Hope this little bit helps. 

[BattleScars]

I'm sorry to hear your treatment regimen isn't going well and that you are feeling despondent.  However, what are you needing from us?  Are you just wanting a sympathetic ear or suggestions?

I don't want anything. Just curious if this is "normal" after 2 years of dialysis or anyone else experienced these symptoms and found ways to lessen them or cope better. I also hadn't slept in over 24 hours when I wrote that this morning so I wasn't exactly thinking clearly, I was really feeling more drug down than usual.

[BattleScars]

Hi Battlescars,

Based on my experience, it sounds like you are taking off to much water which will cause the cramping.  Also, cheese does higher your phosphorus.  I love cheese also but have to stop eating it for at least one or two months.  My phosphorus went down from 6.0 to 3.9.  Also, red meat has a lot of phosphorus as well so you probably want to cut down on that to if you eat it.   As for me, I will eat cheese for one month than stop eating it for the next two months than pick it back up again for one month and stop eating it for the next two month. It seems to work well for me.  Yes, it’s hard at first but you will get use it and it becomes very easy should you want to use my method. 

As for camping, try to leave on ½ to 1 pound of water.  Your body needs water so doesn’t take it all off because your body will start to take it from your muscles, which at times can be very painful.   

Do you take any vitamins?  It will help give you some energy.  You can talk to your doctor to see what type of vitamins you can take.  Also, are you skipping treatments and/or cutting time? If so, that to can cause you to be weak.   

Hope this little bit helps.

Thanks for the advice. Here's the tricky part for me. When I start feeling bad and my symptoms get worse I don't sleep well and then I do end up skipping treatments or not doing them correctly because I'm so out of my routine and then I feel worse again. Lol it's a vicious cycle really. One weird thing is I was doing my PD treatments without warming up my bags since I do 4 manual exchanges a day but my nurse wants me to start warming them again. So I go to warm a bag and it usually takes 3 to 4 hours. If I go to bed by the time I get up my bag is so hot that it's dangerous to use and I've been told it breaks down the dialysis solution. That's when I have my heating pad on low. So I find myself waiting around half the morning for a new bag to get warm and because it's so cold lately these bags are taking longer to warm up. This is messing me up big time. Maybe this is part of the problem?

[BattleScars]

I have no answers, but feeling bad for you.
How is your KT/V? When did you last have a chest xray? You might have hidden fluid.
It doesn't sound like you are getting adequate dialysis, but I am no expert. What do they say about your fatigue and symptoms?
Sending you hugs and best wishes for better health. 

I'm trying to get hooked up with a new PCP so hopefully soon I can get a few more tests run. I haven't had a chest x-ray in probably a year or so. Thanks for the well wishes.

[natnnnat]

Here have some more 

[jeannea]

I only did manuals occasionally so I didn't warm the bags. Is that how long it should take to warm them? Do you need a new heating pad or system? I'm not sure why your nurse thinks this is important. I thought the warming was only for comfort. I agree it's easy to get in a bad pattern with skipping. I knew I would skip manuals so I did the cycler and only missed occasionally like for the tornado warnings for Hurricane Irene.

It's so hard to get out of your bad habits but they probably do contribute to feeling bad. Try to find the energy to make a new start. You can do it.
 

[BattleScars]

I only did manuals occasionally so I didn't warm the bags. Is that how long it should take to warm them? Do you need a new heating pad or system? I'm not sure why your nurse thinks this is important. I thought the warming was only for comfort. I agree it's easy to get in a bad pattern with skipping. I knew I would skip manuals so I did the cycler and only missed occasionally like for the tornado warnings for Hurricane Irene.

It's so hard to get out of your bad habits but they probably do contribute to feeling bad. Try to find the energy to make a new start. You can do it.
 

I thought the same thing about warming bags. My only issue with colder bags was cramping when filling. But my new PD nurse told me it was important to warm the bags because the exchange doesn't start happening until the solution is the same temp as the body. She says if I do a cold bag I should add 30 min to my dwell time because I'm not getting any dialysis that first 30 min. I don't know if I totally agree with her. I mean I don't think it takes 30 minutes for your body to warm up the solution you put in. Like when you drink a cold glass of water I'm pretty sure it warms up pretty quickly when it hits your stomach, you feel it cold as it goes down but then it goes away. I'm no expert but I wouldn't think it would take more than 10 min to warm up inside the body, maybe 15 tops.

[Tío Riñon]

I have little respect for Kt/v as a measure of adequacy.  When I was doing PD, towards the end, I was feeling just as you do, despite my Kt/v indicating otherwise.  Have you had a PET recently?  Has anything changed, such as loss of residual renal function?  Have you had any issues with UF?  could you switch to home hemo?  It transformed how I feel, and although it is more onerous, it is better than feeling as if you are twenty or thirty years okder which is how I felt for the last few years that I did PD.

I agree about kt/v NOT being an good indicator of adequacy.  However, I wonder if you aren't getting enough treatment.  I have used a cycler for the last few years and only ran it about about 6-7 hours a day.  I had many of the symptoms you describe off and on--cramping, dizzyness, fatigue, lethargy, etc.  My nephrologist encouraged me to extend my cycler runs to 9 or 10 hours--especially since I'm a bigger guy.   I finally listened to him and it has made a world of difference.  I rarely cramp and feel loads better.  I am back to doing chores around the house instead of laying around trying to gather enough energy to do a simple task.

I also did a PET, so we better understood how my system processes the fluids and toxins when I'm on dialysis.  We made changes in my protocols accordingly.  I encourage you to track your readings with your flowsheet, do some tests with your doctor like amanda100wilson mentioned, and then discuss how to modify your treatment as appropriate.  Hopefully you'll soon experience a change.

BTW, I'm just as guilty as you about consuming pizza, cheese, and other "forbidden fruits".  Eat in moderation and be sure to adjust your binders as appropriate.  I normally take a few extra when enjoying a "guilty pleasure".  The other thing I do is try to prepare the items myself so that I control the amount of ingredients with phosphorous, sodium, etc.  Restaurants use way too much of the items that are bad for the renal diet and often times we have no idea what is in the product nor how much.

Good luck!

[Simon Dog]

although it is more onerous

I switched to home hemo, and have been delighted with the outcome.  It's a bit more work than I expected, but cannulation is less of a problem than I expected - and MUCH better than going in center.

[Deanne]

I'm sorry you're feeling so sick. Wet noodle slap: I think you need to decide whether feeling sick is better than being 100% compliant for a while to see if it makes a difference. Follow your diet and get your phosphorus level back to normal. I know it's hard. It's hard for all of us. I haven't had pizza or Diet Coke since April and I'd almost kill for them! Don't skip exchanges. Warm your bags. My nurse also told me that if I use cold bags, I'm missing dialysis time. If it doesn't help, at least you'll know you're doing everything you need to be doing and your doctor needs to look elsewhere for the answer.

[billybags]

BattleScars, Have they  checked your hemaglobin  and iron lately? My husband has been on APD for the last 4 years, is there a chance you could do that. They have been trying to get his HB up for months, it was quite low and he has been feeling sh** just like you. It has taken a long while to get  his hemaglobin up to a good level and he feels better for it. Are you having EPO injections? You must talk to your neph and tell him how you feel. The itching and other stuff is just a part of the renal stuff that you go through. I am sorry you are having it rough talk to your neph.
 

[Wildrose]

I don't want anything. Just curious if this is "normal" after 2 years of dialysis or anyone else experienced these symptoms and found ways to lessen them or cope better. I also hadn't slept in over 24 hours when I wrote that this morning so I wasn't exactly thinking clearly, I was really feeling more drug down than usual.

Battlescars, you are not alone. I suffer all that, plus more. I am so sorry you are going through it. I am sorry that I have no advice to give, I just have to deal with the symptoms.
Well, I guess I have a little advice. One you probably can't do though because of potassium. I drink gatorade after every dialysis run and it really seems to help a little bit with some of the muscle fatigue and deep down bone ache that I get. It doesn't cure it or take it away but it seems to help. I really think its because we need electrolytes. If you can't drink gatorade another thing you can do is take a fresh lemon and squeeze it into water, that should have the same affect. I used to do that before I switched to gatorade but it was too much work for me after dialysis.
As for the resetless leg syndrome have you ever tried treating it with lavender? You can put a lavender sachet at the foot of your bed at night (under your sheets) and see if it helps. Or what I do is rub lavender essential oil on the soles of my feet and it helps relieve it a bit.

Now a days I come home from my dialysis run, take two excedrin migraine pills (haven't had that approved by my Dr yet) for the horrible evil migraines I get during dialysis and then I just sleep for the rest of the day. Thats how I cope.