When I was pre-d...

[wvgirl]

I thought alot of my problems were in my head. The doctors made me think alot of the problems were in my head. I now know that they weren't and want to share my experience with anyone out there who is pre-d and may be having some of the same problems.
5 years prior to dialysis, with a gfr about 35 my arms became very weak. Folding clothes became a chore. My hemoglobin was between 10-12, which was low, but not too bad.
4 years prior, with gfr about 30 I became nauseated every morning, started vomiting at least once a week. Brushing my teeth made me sick. My nephrologist said is was not caused from kidney diseas because my numbers were still in the OK range. He sent me to a GI doctor. An edoscopy showed the only thing wrong was erosion of my esophogus which is caused from frequent vomiting. Because of no other diagnosis, I was diagnosed with Acid Reflux and put on Nexium. 2 months later after no relief another similar med. Still no relief and yet another plus reglan. After a few years of no relief I gave up and quit taking the medicine and continued to be sick.
2 years prior with gfr about 25.. Hemoglobin dropped to 8. One blood transfusion and epogen every other week started. So tired, pale, and weak but the epogen did help some.
7 months prior gfr 20. Got the fistula and became very depressed. My anxiety level was also through the roof. I was put on lexepro and a small dose of xanax. There were times I actually thought I was going nuts. I was still vomiting once a week, gagging when I brushed my teeth and had dry heeves every morning, but since my doctor said they were not caused by my kidneys, I tried to ignore it the best I could.
In may I started in center dialysis when my gfr hit 9. My symptoms were really no worse than they had been for years, but I was so tired of being sick. I WANTED to start dialysis. Anything to try to feel even a bit better. Within 2 weeks, the nausea and vomiting stopped. I became able to think better. My depression went away(the lexapro may have helped that too.) I felt like a new me.
I have not been sick since May. It wasn't all in my head. I realize now that I just felt symptoms earier than some because I don't think Acid Reflux would go away with the start of dialysis. I don't know how long I will feel this good but am so thankful every day I am not sick. Of course I don't know if my doctors think dialysis helped the nausea from 4 years ago but I know it did.
I hate dialysis, but I hated being sick everyday even more. Don't be afraid.

[MooseMom]

I am so sorry that you suffered so much for so long.  Even with a gfr of 14, I never had the trouble that you describe, which goes to show that CKD presents differently in different patients.  Even if you pride yourself in being "in tune with" your body, it is very hard to know what is going on when you have CKD.  Which symptoms are CKD related and which are not?

I am so glad that dialysis has eradicated these awful symptoms.  If YOU know that dialysis helped with the nausea, then I'd guess that you are right.  Sometimes we patients just KNOW.

Starting dialysis must be a terribly scary thing, so for you to tell us not to be afraid, well, thank you for that.  Words of encouragement are always appreciated.

[MaryD]

I'll second the disappearance of 'foggy brain' after starting dialysis.  It was lovely to be clear headed again.

[Jean]

wvgirl, thanks for that info. I am pre-D, stage 4, last blood work had me at GFR of 23. I am beginning to experience some of those symptoms, but according to my Dr. kidny disease causes no side effects. Yeah, sure.

[Alex C.]

For myself, my nephrologist is always surprised that I DON'T have chronic nausea, considering my blood work results. I do get a lot of headaches, though. I'm pretty proactive about mt diet, limiting my protein intake to between 40-50g/day, so that may be why I'm not nauseous too often.

[mamagemini]

I'm going to jump in here with WVgirl and say too that I have been on D for 3 treatments now and lost weight,  no swelling and the day after treatment I feel great. You do not know how sick you are until you start dialysis. I was ready to deal forever...luckily I was talked into it by my friend and the in-center staff. The muscle cramps have been the worse but nothing compared to crappy feeling all day long. Swollen ankles and feet so bad they burn, exhaustion, nausea, headaches, dizziness, so called asthma and on/off vomiting. I haven't needed my inhaler since Saturday!  

[wvgirl]

Jean, you are so right!! I didn't realize how sick I was untill dialysis started. The doctors made me feel like I was a nutcase because they said there was no reason for me to feel as bad as I did.
And like mamagemimini, I thought maybe I should just wait longer to start dialysis, especially since the doctors were saying most of my symptoms were not from my kidneys. I ended up with a gfr of 9 asking him to start me. I wish I would have started a few months sooner and not had to feel so crappy during that time.
I know not everyone feels this good from dialysis, and I also know not eveyone has the same symptoms and I too may not feel this good forever, but I am thankful everyday I don't wake up puking!! 
I mainly wanted to put this on here to let you know if your gfr is in the 20's your symptoms MIGHT be from decreased kidney function, even if the doctors say it isn't. I now know mine was even though I doubt my doctor would agree even now.

[fearless]

wvgirl,
thanks so much for posting this.  I suspect there are more peoplethan we like to think "out there" who are suffering and whose doctors just don't believe have disease bad enough to warrant aggressive care.  I started experiencing swollen ankles many many years before I was diagnosed with ckd.  When I started collecting my medical records for myself I realized that the labs had been off for years and no doc had ever investigated.  It was ignored.  I was the one who finally insisted on a seeing a neph.  And the he didn't want to get a diagnosis!  just wanted to monitor.  I insisted on diagnosis, then he didn't want to treat!  I had IgA, which can sometimes be slowed or halted with steroids.  I didn't know that til too late.  I did know that fish oil could help, and my doc said yes, but he didn't know how it was dispensed or how much I should take!  (found out online)  God, how I wish I'd known better.  But the doc just didn't want to believe that I was as bad off as I was because my clearance was stll not awful.. But I was anemic (he insisted it was due to low iron and I had to go to a functional med doctor to get the test that showed it was due to the kidney failure - iron was fine)  I was losing lots of protein through my urine and experienced horrible swelling - my legs were twice the size of usual.  But never when I was in the office - so I actually took pics of how if my legs were crossed for 5 minutes when I stood up there was a huge leg-sized indentation in my leg.

My blood pressure was creeping up and the doc put me on BP meds, which decreased the protein loss and BP, but lowered the clearance - so he took me off them!  It was all about the clearance with him, as long as that was OK it was like he refused to believe I was sick..And I was sick.  Massive migraines and vomiting (probably from the migraine- which was probably from the swelling and High BP.

So you probably think I'm an idiot for trusting this doc.  But I was just ignorant.  He was the only doc in my small town and had been in practice 20 yrs+.  Everybody trusted him, but I guess he was just as ignorant as I.
You know when you're sick.  If you know you have ckd learn what the labs mean, ask for your copies, treat your high BP, and learn everything you can about diet, meds, and ask for what you need.  And don't put up with a doc who won't explain things.
thank you wvgirl!!!

[Jill Marie Evans]

Fearless,

I have a very similar story. I should have paid more attention to the details myself instead of leaving it to the Dr. I don't know what can be done to spread the word.

[bjkuds]

I'll second the disappearance of 'foggy brain' after starting dialysis.  It was lovely to be clear headed again.

Please excuse my lack.. but hubby went on PD about 8 months ago.. lived with undetected renal failure until a little over a year ago and started with a GFR of 9.  turns out our PCP saw protein in his urine a decade ago but never followed up with ordering other tests or referring to nephrology.  He was tired all the time.. throwing up(blaming it on his sinuses) and foggy brained..BAD. Now that I have hind sight..this has been going on for many years.. blaming it on no exercise, stress, poor diet.. him just not giving a crap.  He didn't ever want to do anything on days off, fix anything, go anywhere..nor could he remember the simplest conversation, request or important thing I or our kids needed him to remember.  It was bad because I thought he just didnt give a crap about anything except sleep and I had no idea he was very sick. Never fell out of love,, just wanted to shoot him a few times is all..Question is... PD hasn't "fixed" Mr Foggy Brain completely.  He has his days when he is still VERY tired.  If he gets a transplant,, will the fog lift? He was quick witted and bright, now he doesn't remember total conversations sometimes and repeats instructions constantly to the point of annoyance because simple things seem complex to him. We aren't that old to be thinking dementia or other causes. No one ever told me anything about that being part of kidney disease.

[mamagemini]

Well I don't know if this is the reason your hubby is mush brain (its what I call myself) but imagine your kidneys which are not filtering all the vitamins, proteins and liquids to where its supposed to go. They are not, for years, been going to the areas it needed too. Those areas are greatly LACKING nutrients they need to run. The brain is totally included in on this! Lack of protein can make you a really big dork.

[fearless]

bjkuds,

my suggestion would be: when you meet with the doc after you get a lab report: go over each value, know what it means, and ask the doc what being outside the normal range can mean as far as symptoms.  Pay attention to what you might be able to do to improve the values that are "off.  Is there medicine that will help?  A diet change?  A treatment change?  What can be done to improve his lab results?  And if lab results are good: what does the doctor think is causing the problem?
Also, if he's had chronic anemia for years, are you at a clinic that encourages your doctor to personalize esa dose for lifestyle?  Or is he being kept at a very low hemoglobin?
Is he dehydrated?  That can happen easily on PD and make a person tired and "foggy" too.  Please ask your doc a lot of questions and let him or her know that your husband isn't his normal self.  Make sure you understand his answers so you have a "plan of action" when you leave the office.
That's my personal advice.

[bjkuds]

fearless,
I have access to all his labs that are done monthly and those in between as well.  Our hospital posts results on line and I can basically see his entire medical record.  I don't understand a lot of it but I am grasping more every day. They are constantly changing the boat load of meds  and diet depending on the latest labs.  He is anemic .. Ferrous Sulfate 325 x2 every day..dehydration is probable because he cramps often and I suspect that the cramping is from dehydration usually. Hypertensive, diabetic, High cholesterol, pulse is normally low 50's.. which I realize can cause a serious lack of mental function too.. It is a trade off between severely high BP or the slow heart rate caused by the only med that seems to lower his pressure..  I am just wondering how many of his list of problems will actually be helped if I can donate..  He is wondering too.. He has all kinds of physical issues that go with diabetes etc.. but the mental lapses bother me more than anything and he knows he is forgetful, but I don't think he really realizes how frequent.  I will talk to the doc in a few weeks while he isn't with me..  He doesn't need to be told that he is acting like his crazy mother in law on top of it all
And thank you both mamagemini and fearless

[fearless]

I hope you can sort things out.  Diabetes throws a whole new list of possible causes into the mix.  I'm afraid i don't know much about that.  But I've heard that blood sugar can have effects like that too.
There are so many variables!  Please don't be afraid to press your doctor to help you understand how all these things fit together.  Sometimes they think people can't master these concepts, but they can!  They just need to be taught, right?  It's medicine, and we didn't go to medical school, but we need the info.
He's VERY lucky to have someone who cares about him. 
i wish you both all the best.

[Jill Marie Evans]

I was told that taking iron wouldn't really solve the problem because the hormone that your kidneys produce (EPO or something) has to be replaced for the bone marrow to make red blood cells. I will soon be getting shots for this. I, too, had extremely high blood pressure. I wear a clonodine patch, which is easier than taking three more pills for it everyday. I am not diabetic and have low cholesterol, so I can't comment on that, but I think those are things which might be controlled by diet. Hope that helps.

[MightyMike]

Everyone is different and will experience different symptoms at different stages.  Doctors tend to go by the average symptoms at the average stage when people should start experiencing symptoms.  But if any of your doctors tell you there are no side effects from kidney failure it's time to find a new doctor because he doesn't know what he is talking about.

[wvgirl]

Yep, everyone is different and has different symptoms and dialysis seems to help some more than others to get rid of them. I read about so many people having no symptoms at all till gfr was down to 4 or 5. I really thought I just had something wrong with my stomach and never really thought to question the doctors on it. When the nexium, zantac, and dexilent didn't help I still thought I just had acid reflux so bad medicine wouldn't help. When I told the doctors about my nausea every single morning, they said it was from acid in my stomach overnight settling from my laying down. I even tried sitting up to sleep!! I quit gagging every morning within my 2nd treatment. I have gained 15 lbs since starting d in May. I was getting so skinny because food made me sick for so long. I am 5'6" and was down to 110 lbs. Everytime I went to the doctor I weighed less each time. Now it is almost embarassing my dry weight goes up almost once a week!! Food is so yummy now that I am not aloud to eat anything good! 

[MaryD]

 We aren't that old to be thinking dementia or other causes.

I read in some reasonably sensible paper eons ago that if your peripheral vision is OK you are probably not getting dementia.  One of the first signs in someone who drives is an onslaught of minor scrapes on the side of the car.

I am frequently seen sitting quietly watching TV while waving my fingers at the side of my head, just to check that my marbles haven't disappeared that day.

[brenda seal]

Thanks Mary I so needed that giggle !

[bjkuds]

 We aren't that old to be thinking dementia or other causes.

I read in some reasonably sensible paper eons ago that if your peripheral vision is OK you are probably not getting dementia.  One of the first signs in someone who drives is an onslaught of minor scrapes on the side of the car.

I am frequently seen sitting quietly watching TV while waving my fingers at the side of my head, just to check that my marbles haven't disappeared that day.

    good one.. thanks for the giggle this morning

[mamagemini]

 
I can relate.

[Leanne]

Hi wvgirl....I am a WV girl too!  Luckily my doc wasnt an ass like yours.  He told me my symptoms were from my ckd.  Many the same as yours.  I feel like crap after dialysis but mostly I feel much better too.  I was nauseated and puking for months.  I still functioned but I was very tired and run down.  Months before dialysis are a kind of blurr for me to remember.  Dialysis totally sucks but I do feel better than before.

[wvgirl]

Leanne, If you don't mind could you tell me where you go to the Nephrologist and who? I am thinking about changing docs. He is still telling me there is nothing wrong with me!! I felt so good at first from dialysis, then he switched me to 2 days a week. At first it was fine, and I still feel great the day after d, but the 2nd and 3rd days are rough. I tell him, and he is still ignoring me!! I go to Parkersburg right now, but am in between Parkersburg and Charleston. A really long way from both, but one is no further than the other. Thanks!!

[newgrl]

I didn't have any of the symptoms you had.  However, for the past year, my doctor told me to watch for those symptoms.  She told me that if I started to throw up to call her cell phone.  We went back and forth about when it was time to start.  I did not want to start and she wanted me to start at least 6 months ago.  I had a low hemoglobin, so there were several times where I had blood transfusions, and EPO shots.  I finally started when she thought there might be a problem with my heart.  On dialysis, I have been maintaining my weight.  I don't have to have fluid removed, they just clean my blood.  Also, even though I haven't had a cycle in forever, it started within two weeks of dialysis. What luck!

NewGrl