How do you feel?

[MooseMom]

Are you all pre-D people getting along OK despite severely reduced kidney function, or are you really struggling?  I thought I was doing OK, but I went to CA for a week last month, and ever since I've been back, I've felt rather rotten at times.  It was SO HOT out there, and I couldn't get in my exercising and I didn't sleep well and so on and so forth.  I was all out of sorts, and I've lately been struggling with mild bouts of nausea from time to time, sorta like motion sickness.  Usually I can eat a little something and I'll feel better, but it worries me that my renal function has deteriorated again.  I have my usual neph appt at the end of the month, so I'll find out more then, but it's a vicious circle...I'll feel a bit crummy, and then I'll get scared that I MUST START D TOMORROW, and that makes my stomach hurt, and then I feel nauseous, and then I KNOW I have to start D TOMORROW, and on and on it goes.  I think myself into illness, I suspect.  I walked almost 3 miles the other day, so it can't be that dire, but geez, you never know what the numbers are gonna say.

So, how do you all feel on a day to day basis?  And how do you cope with your symptoms.

Oh, and one more thing.  My feet always burn.  I have cold wraps to put on them, but boy, it feels rotten.  Renal neuropathy?

[brandywine]

I'm curious too. It's been about 2 months since my most recent lab report and the last two weeks, I've felt my health take a serious turn. I have been doing fairly good, my creatinine not above a 2.7, but I have a feeling that it will be considerably higher when the results of the blood I had drawn two days ago comes in.  My last 24 hour urine test was about a year ago, and this time, I produced about a fifth the amount of urine. I am occasionally nauseous, dizzy, confused, chest heaviness, and now have hiccups randomnly.  The swelling in my feet and legs is painful and extreme...to the point I can't even wear my shoes at the end of the day. I'm on 20mg of Lasix.  I worry that my condition could turn over night, and I'll wait too long to get help because I'm so used to being miserable.
I wonder what other people felt like right before they were told they had to start dialysis, especially if it were an emergency situation.

[Deanne]

I'm approaching 20% function and notice a difference in a few things. I'm never sure if I should attribute it to age or my kidneys. I have a much lower range of comfortable temperatures. I can't tolerate working in the yard in the sun if the temperature is much over 70. I get cold in the house if the temperature is under 72. I keep the thermostat at 70 in the winter and bundle up. I think I tire more easily than other people. I'm generally headed to bed by about 8:30 (get up at 5:30). I have to get up to pee during the night. Sometimes twice. I find myself thinking twice about some fun activities because I know they'll tire me out. For instance, I don't have to work today, so I'm planning a trip to the beach (about an hour & a half drive). I know the drive alone will exhaust me and I might have to nap in the car for a while after I get there.

My appetite is still good (too good?  ) and I don't often get swollen except for when the temperature outside goes over 90. This is thanks to lasix though. Sometimes I go through phases when I feel like  every morning. Any kind of injury / pain makes me feel like  Viruses hit me hard. It can take me weeks to get over a simple cold. The thought of getting the flu terrifies me.

I still exercise regularly. I walk three + miles every Saturday and Sunday and I bought a Wii a month or so ago and use it every day if I don't know I'm going to be doing something else physically active that day (like going to the beach today). I think the exercise helps a lot. I've felt much more energetic since I've been using it (altermating between Wii Fit Plus and EA Active).

I worry that things could change overnight, too.

[carol1987]

I feel good... My doc finds that hard to believe because my Creatnine id 7.09 and my GFR is 6.
I  have no nausea.. good appetite ... just can't do too many sets of stairs... and get tired more easily.

Unfortunately my doctor has decided that he does not want to push it any further and has said I need to start D next week. I will begin in the hospital for two "short , gentle" sessions ( doctors words) , one on wednesday and one on thursday and then begin my in center treatments on saturday.

I am probably as mentally prepared as possible... though now I am starting to get a tad worried about learning all of the numbers and levels I have seen posted  about what to take off.... etc.
So on to the next phase of preparing and learning .....

[kremizin]

can't describe how i feel...to think that it's not even me who has the disease. when the news came to me that my mom have been told by her doctor about dialysis...i can't believe it and until now i'am still hopeful that a miracle will happen.

[Restorer]

Just one thing I noticed: during the summer after I was diagnosed (and my GFR was already around 7 or 8 ), my car's AC was far from effective in the 100+ degree heat. I realized I had a really hard time sweating! I'd go out to my car, drive to the store, get there, feel short of breath and a little terrible, and realize I hadn't started sweating. I don't know if it was the toxins, or the anemia, or dehydration (because I was peeing more than usual the way my kidneys failed), but it was very hard for me to sweat. Driving during that summer, I had to bring a wet rag with me to keep myself cool.

Carol, once I was diagnosed and stopped eating potatoes and so much protein, I felt "just fine" (probably not very good, but fine for me at the time), no vomiting, only occasional nausea, and my creatinine was around that same number. I went for a year and a half with my creatinine slowly climbing, and I only felt really bad just before I was to start dialysis.

[carol1987]

Matt ....Restorer,

I am so torn... i want to wait until I feel bad before I start!!! Does that sound crazy???   But my neph really feels like we have pushed it already and doesn't want to wait any longer......

carol

[Restorer]

There are two ways to look at it, Carol.

If you're feeling fine, there's no reason to start, and you already have a fistula so you can start whenever you need to. But, if you don't realize you're feeling bad enough until it's too late, you might end up needing to be hospitalized, rather than easily starting at a center.

The difference for me between feeling okay and needing dialysis NOW was a few days of "a bug." I started feeling sick, but my PD nurse (I had had the catheter placed, but it wasn't working) thought we should watch it and see what happens - there was "a bug" going around, so she thought I'd get over it. I still don't know if it was a virus or something that set it off, but over the next few days I got worse, then I wasn't keeping food down for very long, and then I couldn't walk without getting lightheaded and needing to sit down. I couldn't drive myself to a doctor, so I ended up in the emergency room with a groin catheter for three days of hemo.

So, you might not know when it's time, unless you're very vigilant. And if you're sicker when you start, the first couple of weeks will be even harder.

But, again, it's your choice. You might be okay for a lot longer. I stayed at around 7 GFR for a year and half.
 

[brandywine]

I'm curious too. It's been about 2 months since my most recent lab report and the last two weeks, I've felt my health take a serious turn. I have been doing fairly good, my creatinine not above a 2.7, but I have a feeling that it will be considerably higher when the results of the blood I had drawn two days ago comes in.  My last 24 hour urine test was about a year ago, and this time, I produced about a fifth the amount of urine. I am occasionally nauseous, dizzy, confused, chest heaviness, and now have hiccups randomnly.  The swelling in my feet and legs is painful and extreme...to the point I can't even wear my shoes at the end of the day. I'm on 20mg of Lasix.  I worry that my condition could turn over night, and I'll wait too long to get help because I'm so used to being miserable.
I wonder what other people felt like right before they were told they had to start dialysis, especially if it were an emergency situation.

So yeah, got the bloodwork back today. My creatinine jumped to 3.23, that's the biggest climb in the shortest amount of time since I have been diagnosed. BUN is 43. GFR is 16. Parathyroid levels are nuts...170. Normal is 10-65.  I make an appointment tomorrow with the PD nurse to start the dialysis process. My doctor said it takes several weeks for the site to heal and he wants me to ready for dialysis when it's time.

[MooseMom]

Brandywine, this is where it gets confusing.  For almost a year now, my gfr has been jumping around between 15-18...my numbers are a lot like yours, but my parathyroid was normal as of 3 months ago.  I feel well enough to go about my life, so my neph isn't talking dialysis just yet.  That said, I do have a fistula, so I'm ready.

This is such a life-changing event, and we are all here to support you.

[Stoday]

Two weeks before Dday I got so sick I couldn't keep any food down and I couldn't even take my medications. I wasn't hungry in the least — I had forgotten what hunger was like, not having felt the least bit hungry for the previous 12 months. I found it difficult to get out of bed; I had no interest in reading the newspaper or even watching television. I did notice that as the week progressed, my ankles, which were normally swollen, no longer were. They looked normal. It didn't dawn on me that I wasn't drinking enough and I was becoming dehydrated.

After a week I got terrible pains in my guts, which is what took me to ER. I was admitted to hospital for emergency treatment initially getting me rehydrated, then clearing a bowel obstruction. Lastly I was wheeled into the renal unit for my first dialysis. That failed because the nurse stuck the needle in my fistula and out the other side, infiltrating me. The session was abandoned. 

I'm telling you all this so you might recognise what's happening if you delay too long and you do something about it instead of living with it for a week as I did.

[MooseMom]

What a cautionary tale!  That sounds brutal, it really does.  Thanks for telling us that; now I know more about how to recognize the signs that D is really necessary.

[brandywine]

I just left the grocery store a little embarrassed. I was standing in line with my groceries and started feeling sick. I got really hot and started sweating.I tried to push through it, but felt like I was going to faint. I had to leave my groceries with the clerk and go sit down. After about 3 minutes, I felt well enough to stand again, but now I'm home, and I feel so bad. Sour stomach, heartburn. I took my temperature and it's normal, although I still feel like I'm burning up. My BP was actually low, first time I've ever seen my bottom number at 70.  Not sure what that's about. It's too bad that everybody's symptoms aren't exactly the same. We could better advise each other.

[MooseMom]

Brandywine, that sounds very disconcerting.  I can see why your neph wants you to have your PD catheter placed.  The hardest thing in the world for me was getting my fistula, but now at least I don't have to worry about needing D and not having an access ready, and that's a big worry off my overloaded plate.  Have you spoken with the PD nurse yet?

[brandywine]

No, haven't spoken to the nurse yet. And I was so busy at work today, I didn't realize that the doctor's office didn't call me. I have to put that on my agenda first thing Monday morning. Do you think it would make sense that the increased dosage of Zemplar would cause my blood pressure to fall?

[MooseMom]

No, haven't spoken to the nurse yet. And I was so busy at work today, I didn't realize that the doctor's office didn't call me. I have to put that on my agenda first thing Monday morning. Do you think it would make sense that the increased dosage of Zemplar would cause my blood pressure to fall?

I'm not aware of Zemplar causing bp drops, but I didn't take Zemplar long enough to know one way or another.  Is there anything in the patient information leaflet about this?

[kristina]

I just left the grocery store a little embarrassed. I was standing in line with my groceries and started feeling sick. I got really hot and started sweating.I tried to push through it, but felt like I was going to faint. I had to leave my groceries with the clerk and go sit down. After about 3 minutes, I felt well enough to stand again, but now I'm home, and I feel so bad. Sour stomach, heartburn. I took my temperature and it's normal, although I still feel like I'm burning up. My BP was actually low, first time I've ever seen my bottom number at 70.  Not sure what that's about. It's too bad that everybody's symptoms aren't exactly the same. We could better advise each other.

I have noticed at night my blood pressure drops and I sweat.
I have found on the Internet that this is a known problem but I have not yet found
 why it happens & have not found a remedy for it.
I take a small dose of antihypertensive medicine to control my hypertension every day.
If I cut down my antihypertensive medicines I would endanger my life
& probably my kidneys which hang on to work only ~10% at the moment (ESRF)
So, I fully sympathize with, and understand your problem, but I have not found an answer yet.
Please let me know if you find out anything out.
Good luck from Kristina.

[MooseMom]

Kristina, I've been taking three hypertensives for years now.  I went through a period of time when suddenly my bp would drop and I'd get very weak and sweaty.  This would happen for no apparent reason.  After several minutes, I'd recover but feel very tired, and I'd often find I'd have to take a nap.  I just figured this was all part of being a renal patient.  Oddly enough, this all passed, and even though my renal function has deteriorated somewhat over time, I have not had this low bp problem in quite a while.  It's a very strange sensation.

[kristina]

Thanks for your reply, MM, its good to get some feed-back on this
because I haven’t come across it and it does make me wonder what is going on.
It may be one of those things one has to live with in ESRF and it may pass away naturally.

Thanks again from Kristina.

[MooseMom]

I've had a couple of irritating things happen to me, like that tickling cough...I had that for many months and was always spraying my throat with something.  I thought maybe I had developed some sort of environmental allergy.  It suddenly stopped and I haven't had trouble with it for several years.  Later I read on IHD that other members were having the same problem and that it was a fairly common side effect of one of the hypertensives I was taking.  It was very strange.  I think, though, that if we do develop some sort of little problem, there is a danger that we might just assume it's yet another thing we have to put up with and so we don't mention it to the doctor...and then later we find out that it has nothing to do with ESRD or meds.  I suspect that if my thumbs fell off, I'd probably chalk it up to CKD, and that's not smart. 

[VintageVera]

DEAR MOOSE MOM: I got sicker and so fatigued that I was practically bed-bound by the time I was diagnosed with kidney failure so the dialysis took what seemed like a long time before I felt better. But I want you to know that dialysis is better than always feeling sick and my symptoms are slowly but steadily improving. I've also come to accept that my body temperature is just messed up as we all seem to have problems with that. Peritoneal dialysis is working quite well for me; the only problem is that I don't get a deep sleep on it so after the therapy is done and I've disengaged, I lay back down for two hours in order to get a complete rest. Hope this helps. LOVE, VERA

[brandywine]

I've had a couple of irritating things happen to me, like that tickling cough...I had that for many months and was always spraying my throat with something.  I thought maybe I had developed some sort of environmental allergy.  It suddenly stopped and I haven't had trouble with it for several years.  Later I read on IHD that other members were having the same problem and that it was a fairly common side effect of one of the hypertensives I was taking. 

I had the same coughing problem. Started going a little nutty because I was only getting 2-4 hours of sleep a night when it was at its worst. I even went to an ENT, but nothing helped. I finally took a chance on it being Lisonopril, and stopped taking it (with dr. approval) and after TWO or THREE months!!!, the cough finally went away.

Hallelujah.

I agree with you...about the compiling symptoms and when something else is finally wrong with us, we'll miss it.
I thought that when my parathyroid got out of whack. I knew there was something terribly wrong, but it ended up just being a byproduct of the kidney disease.

[ChickenLittle56]

brandywine, I am gald that you got rid of your cough using drug elimination.
I got out of D and took my post D nap today, when I woke up I was shivering from a cold room. It was 60 outside when I checked. I went outside to feed my chicken and being in that glorious warming sun I felt a lot better. 2-1/2 hours later  its warmed to a nice 74. My room doesn't feel as cold as it did earlier.