7 replies to this topic

[mylimage]

I have been on spiro successfully for about a year and a half now. My skin went from horrible to perfect in 4 months.

Last week I went to my gyn for my annual and I let her do my blood work since my last test was in December. I got a frantic call Tuesday morning that my results showed a big problem with my kidneys. I had her fax them to me and I had elevated creatinine levels as well as a GFR of 53.

Since I didnt really know what the numbers mean and I dont feel sick, I assumed they were false readings- maybe caused from dehydration. I called my derm (nurse practitioner) and told him about it and he sort of agreed with me, said to rehydrate myself this week well and come in Friday for another test. Then I sent him a copy of the results from my gyn. A few hours later I get an email from him telling me my high creatinine levels and lowered GFR were present in my earlier tests with him and to immeadiately stop taking the spiro and go my primary care.

So I had him fax old tests (he had 2 of them). The numbers didnt lie. I researched what the results mean and I likely HAVE STAGE 3 CHRONIC KIDNEY DISEASE! It says right there on the lab results that results GFR <60 for more than 3 months is KD regardless of kidney damage. My kidneys are functioning at 53% and one of my earlier tests(DEC) was 45. It is not unusal from what I have read to have NO symptoms.

Before you spiro users freak out, I don't think the spiro had caused this. I think I have had it all along. I am going to find as many test results as I can from previous doctors to try to find out when it started. If my derm overlooked it, it was probably overlooked by everyone else. I have an appointment with a new primary care next week so that I can be referred to a nephrologist.

I dont want to stop taking spiro. I am reducing the amount for now, but I just can't face acne again. I swear my skin is one of the few things in my life that is perfect right now. I will wait to hear from a nephrologist tell me spiro use will hasten my life before I stop. I am crossing my fingers that it will be ok.

sigh, Cherie

[Jezerball •°o]

wow.... im so sorry to hear that. i'll definitely have you in my prayers. please keep us posted!

[Wynne]

That news is devastating, indeed. I am sorry to hear of that.

Kidney disease is not the end of the world; it may seem like it but it most certainly can be treated and can be overcome.

Please limit your protein intake; protein is very hard on the kidneys and can lead to increased damage. There are tons and tons of great resources on the web for kidney protective diets.

In some cases of certain types of renal disease, spiro is used to help protect the kidneys. Your nephrologist will be able to give you much more information. Your nephrologist will also work with you in the diet you'll need to follow and fluid restriction, if any. Please do be as compliant as possible with the diet/medications/restrictions or you risk end stage renal disease and dialysis (peritoneal or hemodialysis, neither one is much fun and are extremely destructive of quality of life). And remember, your future kidney health is entirely in your own hands, YOU are the one who needs to determine whether or not you're going to follow the doctor's recommendations. If you don't, you do risk further damage and likely dialysis.

Please begin checking your blood pressure regularly; the kidneys are vital in regulating your blood pressure hormonally via renin-angiotensin system.

53% is actually not bad at all. Really!

Someone dear to my heart lived for 6 years with 12% TOTAL kidney function until a kidney/pancreas transplant that has completely reformed the lab values and diabetes.

Take care of yourself and keep your spirits up. Please also don't buy internet medications without a prescription. They can be adulterated and lead to things just like what you're experiencing. You CAN overcome this though.

[zen.garden]

I am new here but just wanted to offer my thoughts and support.

I used to work in a dialysis clinic. I know how devastating it is for someone to find out they have CKD. That said, at stage 3 you have a lot of options. Following a renal diet TO THE LETTER and going to all your nephro appointments can keep you in stage 3 for many many years. I had patients who made it 9 or 10 years before they had to start dialysis, and many of my patients had been on dialysis for more than 20 years. CKD is not the death sentence it used to be.

Assuming you don't have a bunch of preexisting health conditions, you will likely be an excellent candidate for a kidney transplant. The nephrologist will talk to you about this and get you set up for the initial evaluations.

The doctor will let you know for sure about the spiro. You do have to watch your potassium levels very carefully on a renal diet, so I can't promise you'll be able to continue taking it. However, a lot of kidney patients take blood pressure meds so you may be able to continue as long as your levels are within normal limits.

Just try to breathe and take things one day at a time - one minute at a time if you have to. Make a list of all your questions and have them ready for your doctor visit. Don't be afraid to call them and drive them crazy if you need to. My thoughts are with you!

[mylimage]

Thanks for all your thoughts and advice.

Its wierd. I've never been sick before in my life and I have a very healthy lifestyle. I exercise, eat well, I'm at a good weight. There is no family history of CKD. And I feel great now. Although I do feel like shit EVERY morning for about 20 minutes.

I am anxious to see older blood work to see how long I have had a low GFR.

I have been researching the kidney diet. Sucks. I love meat.

I am tapering down my spiro. I dont think its good to stop cold turkey.

Cherie

[mizzbuddy]

Cherie, I read your post and immediately my heart sank to the bottom of my stomach. I'm so, so very sorry to hear this upsetting news. Please know that I'm thinking of you and hoping for the very best. Please keep us posted.

What's also upsetting and disturbing about your story is the way in which your lab results were overlooked or ignored in the past. (My first reaction when I read that was to go pull out all my medical records and go over them with a fine tooth comb....of course the only problem with that is I have no idea what to look for!) Why go to the trouble and expense of doing the bloodwork if the results aren't going to be reviewed properly? Anyway, that's neither here not there -- the important thing now is making sure you stay healthy.

Best wishes to you!
Jill

[mylimage]

Great News!

My GP doctor did extensive lab work (more blood work, 24 hr urinary test and ultrasound of my kidneys). Although my GFR is still under 50, she says there was nothing that showed in my other tests that point to kidney disease. She says she doesnt treat blood tests, and that my ultrasound and urine were normal. I still have to get tested every 6 months now, but she said I can continue taking spiro! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[zen.garden]

So glad you got good news!!!!