I should find out tomorrow if my ESRD is getting worse

[paddbear0000]

Well, I went to see my doctor today to have my kidney function checked. It was my family care doctor, but I trust him more than any of my other doctors. He listens to me, which more than I can say about any other doctor I've ever had. He's just awesome!! He even worked in nephrology for a while, and even participated in a kidney transplant! I appreciate him and his whole staff so much, that I brought in a giant box of Cheryl & Company cookies (the best cookies EVER!).  Anyway, he drew blood to check everything--CBC, liver enzymes, iron levels, vitamin D and A1C. So tomorrow I should find out what my creatinine and GFR is. That's what I'm really interested in. As I've mentioned before, I've been increasingly worse symptoms of my ESRD. I have an appointment with my new nephrologist on Thursday, but we're leaving for my Mom's in Maryland for Christmas right after the appointment, so I wouldn't be able to get results for almost 2 weeks! I can't go that long without knowing!   

I'll keep you posted.

[nursewratchet]

Good Luck.  Get a fistula if possible, you need to be prepared, hopefully you will never need it. 

[G-Ma]

Have a safe holiday, try to keep your mind peaceful while you are at moms.

[Chris]

Good Luck paddbear. Get a copy of the results so you can bring it to the new nephrologist so you will have a less of a chance to get poked again.

[Sluff]

Good luck Paddbear and try not to worry too much. Enjoy the holidays.

[paddbear0000]

Good Luck paddbear. Get a copy of the results so you can bring it to the new nephrologist so you will have a less of a chance to get poked again.

I always get a copy of my bloodwork. I've been doing it for the last 10 years and now I have a file folder that's about 2 inches thick of labwork. And my doc plans to fax the results to them as well.

[Joe Paul]

Good luck Paddbear 

[Lucinda]

Hi Sweetheart.  Not sure how it works over there but your new neph should be able to guage where you are with your renal function from your latest blood results.  If you know what your creatinine and GFR are when you go to see him, he will be able to give you some idea of your level of function and where he thinks you are in relation to when/if you need to start dialysis.  I don't think there is any further testing he would need to do other than those you have already had done that would give him a better idea of your function.  He should be able to tell you at your appointment where he thinks you are at.  You shouldn't have to wait two weeks.  Best of luck and try and enjoy your break.  Best advice I can give is to take every day as it comes.  xx

[paddbear0000]

Thanks everyone for your well wishes!

Lucinda--my function has remained at 20% for the last 3 years, then within a 2 week period, about a month and a half ago, my function dropped to 14%. I just need to know if it's decreased even more for peace of mind while on Christmas vacation. I know the peace of mind statement sounds odd, but I don't know how else to explain it!   

[paddbear0000]

I just got my creatinine back. Apparently it went back down from the 3.7 to the 3.2 which it has been for about 3 months. That's a relief, except for the fact that my symptoms are worse. Is it possible for creatinine to remain the same, yet symptoms get worse?

[Lucinda]

For the past three years my creatinine has been up and down.  My symptoms get progressively worse but I have massive drops.  Just about every second month my neph says that I will be starting next month because my creatinine is up to six and then the following month it is back down to four so she just says we'll wait and see what happens next month and this as I said has been fluctuating like that for three years.  I had my bloods done yesterday and see my neph on Friday so I will be interested to see what she says.  I am due to start my training in January. Try and relax over Christmas.  I am sure you will be fine. xx

[paris]

Paddbear,  good to see you posting!   My numbers are the same as yours and my symptoms have been getting worse.  My creatinine was up to over 4 and now back at 3.2 for months.   The vomiting just keeps on going on and on.  Leg cramps, swelling, no appetite, insomnia, anemia-----all the "normal" stuff is increasing.  Go enjoy your holidays and your family.  Stress and worry will only make things worse.  So try to relax and get lots of rest.  Have a safe trip to Maryland.   

[paddbear0000]

   Thanks Paris! All day I've been stressing because I was thinking my worsening symptoms must have all been in my head after getting my results this morning. Just by you telling me your symptoms are worsening even while your creat isn't, has relieved the stress. I'm sorry you have to deal with it tho.   

[Chris]

Just wondering, are you drinking any caffeinated products?

Curiosity has me wondering if not drinking caffeine might help a little. My transplant center has us not drinking caffeine because it works the kidney's harder along with raising blood pressure.

Go enjoy your get away

[paddbear0000]

No, I don't really drink any caffeine. The only time I do is if we go out to eat, which is very rare.

[Restorer]

Before dialysis, my neph never said anything about caffeine, and he knew I was consuming fair amounts. Then again, he was never really specific on anything about my diet (nor ever referred me to a dietician). His idea of a renal diet was, "Don't try a high protein diet - if you have a big steak, balance it with a salad for the next meal." He never even mentioned my 8+ phosphorus numbers. And potassium? Even though it was the cause of the heart problems that got me hospitalized and diagnosed in the beginning, he never mentioned it.

Whoops, I didn't mean to turn this post into a bashing of my neph. I'm just glad I was able to research all this on my own at the time, or I might have had a worse time.

[Chris]

Before dialysis, my neph never said anything about caffeine, and he knew I was consuming fair amounts. Then again, he was never really specific on anything about my diet (nor ever referred me to a dietician). His idea of a renal diet was, "Don't try a high protein diet - if you have a big steak, balance it with a salad for the next meal." He never even mentioned my 8+ phosphorus numbers. And potassium? Even though it was the cause of the heart problems that got me hospitalized and diagnosed in the beginning, he never mentioned it.

Whoops, I didn't mean to turn this post into a bashing of my neph. I'm just glad I was able to research all this on my own at the time, or I might have had a worse time.

But you did change nephs like paddbear did right?
Moral of the story, idiot neph gotta go!

[paddbear0000]

Ok, new question. I got all of my results back. Now, my ALT (SGPT) and AST (SGOT) are rather high. I think these are liver enzymes, but do they have anything to do with kidney failure as well? My vitamin D level is very low as well, but I think I recall the doctor saying something about the kidney's synthesizing it or something along those lines.

[RightSide]

Ok, new question. I got all of my results back. Now, my ALT (SGPT) and AST (SGOT) are rather high. I think these are liver enzymes, but do they have anything to do with kidney failure as well? My vitamin D level is very low as well, but I think I recall the doctor saying something about the kidney's synthesizing it or something along those lines.

I believe that AST (SGOT) is also found in kidney tissue as well as liver tissue.  So an elevated value could simply be another indicator of your kidney damage.

Then again, you didn't say what had caused your kidney damage in the first place.  Perhaps whatever condition caused that, might have also damaged your liver to some extent?  Just a thought.

[monrein]

http://www.medicinenet.com/liver_blood_tests/article.htm

Could be due to diabetes or even your kidney disease.  Don't panic.

[Chris]

Ok, new question. I got all of my results back. Now, my ALT (SGPT) and AST (SGOT) are rather high. I think these are liver enzymes, but do they have anything to do with kidney failure as well? My vitamin D level is very low as well, but I think I recall the doctor saying something about the kidney's synthesizing it or something along those lines.

I believe that AST (SGOT) is also found in kidney tissue as well as liver tissue.  So an elevated value could simply be another indicator of your kidney damage.

Then again, you didn't say what had caused your kidney damage in the first place.  Perhaps whatever condition caused that, might have also damaged your liver to some extent?  Just a thought.

She is a diabetic Rightside.

Not sure about the AST (SGOT) and ALT (SGPT). For me it's used to look at my liver on my monthly labs. To bad I didn't see this earlier today before I had my labs done. I could have asked the right person in the lab. Depending on Vit D level, there is a prescription dose of Vit D  which is an expensive little sucker.

[Romona]

If you are put on vitamin D you feel better. As someone else as said, creatinine is not the only measure of function. 
It isn't in your head. Your symptoms are real.

[paddbear0000]

I saw my new nephrologist yesterday. He's definitely better than the others! We discussed a fistula for one, which no one else has ever even brought up. He said that because I'm trying for a preemptive transplant, I should hold off on getting a fistula for now. He said if I don't get the transplant within the 6 month time frame that OSU says is the average wait for a kidney/pancreas transplant, then I should go ahead and get it. He's saying to hold off for now since my kidney function has been stable for so long. He also wants me to do bloodwork at 1 month and 3 month intervals, unlike my last idiot nephro, who just wanted it done once a year!

[pelagia]

Sounds like someone who will help you keep on top of things.  whew...

[monrein]

Do you have a donor Paddbear?