Pain in the kidneys during and after HD

[casper2636]

I don't know if I'm crazy or what, but during and after my D my mid back (right where your kidneys are) Aches and gives me the worse back ache for the rest of the day. Maybe it's mental, but I really feel like it's my kidneys. Nothing I do can relieve it. I try stretching, walking around, standing (which makes it hurt worse!) and laying down. Tylenol does not help. The only mild relief I get is when I stand and put my hands on my knees. And I can't do that all day! It happens every time after D. Anyone else have this problem?

[rsudock]

my lower back tends to hurt after D, but not the kidneys. sometimes with PKD people have to get their native kidneys removed b/c they are causing them so much pain. do you have PKD?

xo,
R

[jbeany]

Mine are still sensitive and I've had a transplant.  I flinch every time the doc pushes on them to examine them.  (Mine failed because of juv. diabetes, so it's not cysts.)  I was in so much pain when i first began treatment for kidney failure that it wasn't a flinch during the exam, it was an outright screech of pain.  I noticed a definite link between my hemoglobin and iron levels and the amount of pain from my kidneys.  The lower the levels, the more they hurt.

I'd guess, whatever the cause, sitting in the darn chair at D for hours on end is making it worse just because you can't move or shift pressure.

[ChickenLittle56]

I have that pain also during D but it lasts maybe 2 or 3 hours after I get off. It doesn't happen during every treatment but about once a week. I've been meaning to tell the Neph one of these days, 

[casper2636]

jbeanie- yes, I guess it could be my hemoglobin...I'm always low and have to go in for transfusions once a month because I'm allergic to epogen and I'm waiting for my insurance company to okay the Aranesp. They usually wait until I'm at a 6 hemo. to give me the transfusions. By that time I can barley pick myself from the floor. It's a problem because I get pulmonary edema when they give me them. BIG catch 22. My iron is way high... it's supposed to be 60 but mines over 3,000 because of all the transfusions. Insurance companies should not be the gate keeper of our health. Every transfusion I get makes it that much harder to find a kidney match. I get everyones antibodies and harder to match! 
At least I know I'm not the only one, and that gives me comfort. Some of the things I feel after D make me feel as though I'm mental! :crazy;

[Desert Dancer]

Hi, casper2636 -

I don't have the exact pain you do, but I have had excruciating pain in my left kidney since September 27th (one month after starting D); it came on suddenly and I've had it ever since with only a few breaks. I just wanted to offer you sympathy, because I know in my case everyone looks at me like I'm a three-headed freak when I mention it, and of course no one's EVER heard of pain in the kidneys before because it's just not possible.    I'd never even thought to tie it to hemoglobin; I'll have to take a look at my labs now.

Anyway, here's hoping it resolves itself and goes away. Too bad you can't eliminate your insurance company's interference, too. 

[thegrammalady]

i had pain in my kidney a few weeks ago. i noticed it when i woke up and it progressively got worse. by lunch i was extremely uncomfortable and had trouble sitting or standing. i was beginning to feel lik a jack-in-the-box. i headed for the er. apparently even though our kidneys don't function properly or we don't make a lot of urine we can still get kidney stones. hope that never happens again.

[jbeany]

Desert Dancer - I got that same line - "Failing kidneys caused by diabetes DON'T hurt!"  Well freakin' tell that to mine, then; they didn't get the memo.  My initial doc thought I was drug seeking.  He was so certain I was faking it that he moved behind me to "get something out of a cabinet" and quickly turned and jabbed me in the kidney while I was facing the other way.  I screamed and damn near fainted.  He wrote a scrip for pain meds.  I wrote out a list of phone numbers for other docs and started calling for a new one immediately.   

I had constant blood in visible amounts in my urine at that time.  I never could figure out why they thought something could bleed constantly, but wasn't supposed to hurt at the same time.

[natopotato]

I'm just curious...Casper, but how is your Phosphorus?

[casper2636]

Natopotato- My phos. is always really low. I have to take meds to raise it. It usually runs at a 1 or a 2 when the parameters are 3.5 - 5.5. So they tell me to eat lots of dairy and take the meds. They tell me this very quietly so the other patients don't here that I have free range of foods. They actually encourage me to snack on milk shakes. My Potassium is also low. I guess I just don't eat enough. Can't help that because of the nausea and kidney pain. Who wants to eat when they hurt?

[natopotato]

Wow, I ought to try that! I'm rarely EVER hungry anymore but eat anyway simply out of dread that I might get even thinner than I already am.

[brandi1leigh]

jbeanie- yes, I guess it could be my hemoglobin...I'm always low and have to go in for transfusions once a month because I'm allergic to epogen and I'm waiting for my insurance company to okay the Aranesp. They usually wait until I'm at a 6 hemo. to give me the transfusions. By that time I can barley pick myself from the floor. It's a problem because I get pulmonary edema when they give me them. BIG catch 22. My iron is way high... it's supposed to be 60 but mines over 3,000 because of all the transfusions. Insurance companies should not be the gate keeper of our health. Every transfusion I get makes it that much harder to find a kidney match. I get everyones antibodies and harder to match! 
At least I know I'm not the only one, and that gives me comfort. Some of the things I feel after D make me feel as though I'm mental! :crazy;

I totally understand. I'm not allergic to Epo, but I am what they call Epo intolerant. I have to take a significantly higher dose to get results. When I was first diagnosed I was getting blood transfusions every 6 weeks because the insurance wouldn't pay for the right dose of Epo. I was also worried about the higher iron levels and antibodies. Not to mention that getting a transfusion isn't fun. I was always achy afterwards and felt terrible until my body adjusted. Of course it was better than being low on hemoglobins. Six seems awfully low. My doctor sent me for a transfusion if I fell below 8. Hang in there!

[rsudock]

casper just want to offer my condolescences i pray you find some relief soon!

jbeany cant believe that doc poked you like that and caused u harm! whatever happened to "first do no harm"?

xo,
R