Shy about posting

[Romona]

Well said RichardMel!!     That is why we love you!

[BASSMAN]

Hello everyone and Thank You!!  for your responses!

I got my labs today and they are actually pretty good, well, the same I should say as my last lab.  I have not lost any function since my last lab.

Creatinine 2.7
GFR 27

all other values are in the normal range.

Hemoglobin is good and my neph said that is actually surprising that it is normal at this point.  So, I asked him about being tired and he said "your feeling tired does not surprise me".  We have no idea why I have an increase in fluid retention unless it has something to do with my quitting smoking recently.

Anyways, I am pleased and Ii really thank you guys for your support.  I really like this place!  You are all so nice!!

Thank You!

Are you on any kind of blood pressure pills (besides furosemide)? Back when my kidney function was about where yours is now, I started getting swelling too. My doc put me on BP pills. The swelling eventually went away. My creat now is 3.0 and my GFR is 20, but I haven't had any problem with swelling since then. And I've been at this % of function for almost 3 years now. I've read a number of times, that you can start getting edema in the early stages of KF, but it goes away. Kind of like an early warning sign of sorts.

This brings up an interesting subject but also an embarrassing issue.  I am prescribed Prinivil (an ACE inhibitor).  I have taken this medicine for years and I have also suffered from diarrhea.  I did not put it together until recently and I am convinced that this medicine was the cause.  I asked my neph about it and he was insistent that this medicine was not the cause.  On my own I quit taking it and the diarrhea went away.  I started taking it again, kind of doing my own clinical trial, and it came back.  I quit and it went away again and I didn't tell my neph that I quit taking it.  I refuse to take it again.  The side effect is not worth it for me.  My blood pressure this last visit was 138/80.  Not bad at all.  I fear losing the protective benefits of the ACE inhibitor but I cannot live with the diarrhea.

This got me to thinking.  If you have diarrhea all the time, you lose fluids obviously.  I just recently quit taking the Prinivil, so, maybe this is why I am retaining fluids.  Also the info in your post about BP medicine helping your fluid retention makes me think that maybe this is why???

   Doctor BASSMAN, Doctor BASSMAN!!!
PLEASE REPORT TO THE EMERGENCY ROOM!!!!!
Sorry folks, I have to run

No seriously, Thank You!!!

[BASSMAN]

Bassman - please post. I don't think there are ANY silly questions (well maybe if you ask us what your name is or something... ). Seriously though we've all been new to this thing at one time or another... and it can be daunting and frightening... while it's great to use the search function to see if stuff has been addressed before .. don't feel bad to ask something YOU think is trivial - some other person maybe sitting out there and see your question and might think "hey I'm glad he asked that because I was wondering myself!"

And don't DARE think you shouldn't post because you're relatively healthy with a GFR of 27!!! I think all of us would join me and being VERY HAPPY for you that you're doing OK where you're at (and well done on the results being pretty stable! )... Sure, a lot of us are not doing so well - but that's life. It doesn't mean your questions and thoughts are any less valid or important than ours... and I don't think any of us would begrudge your good fortune to be off dialysis at this point!

So... please post and share your thoughts and questions!

Thanks it is really cool to have people to talk to that do understand!!!!!


Thank you all !!!!!

[KICKSTART]

If you do a bit of digging around , you will also find that some side effects of tablets cause fluid retention. Im always having a battle with my doctor and side effects , i just dont understand why these people dont believe us !

[monrein]

Hey Bassman
If you do a Google search of Prinivil you'll find diarrhea listed among the "less serious" side effects.  I would mention this to your doc and see if it's a dosage issue or if there is another med you could try in its place.
Maybe you could take the information sheet from your pharmacy to the doc in case he wants to insist he's right.
Good luck with this.  It may be "less serious" in that it won't kill you but the big D is a pretty nasty side effect to live with.

[paddbear0000]

You should try another ACE inhibitor. There are a few out there. I used to take lisinopril, but it caused an annoying cough all the time. Now I'm on benazapril. That's not causing the problem anymore. Different ACE inhibitors can cause different side effects in different people. Ask your doc about trying a different one.

[KT0930]

Bassman, I'm coming in late on this one, but as others have said, please post! We've all been where you are right now, and I'm sure many of us had questions that no one could or would answer. The members here will and can!

As for the side effects of the meds, I just went through this argument with my transplant team about one of my meds. They changed everything else I was on, and didn't change the one I said it was until there was nothing left to try. Guess what the problem was??  Talk to your doc, keep on him, question him! I finally flat out asked the doctor why they weren't even considering the idea that it was the problem I suggested. As seems to be the recurrent theme on this site, be your own advocate!

[Romona]

I am on Lisinpril. I was on it pre-transplant and again post transplant. I take a very low dose. Maybe a pharmacist can help you get more info to convince your Doc. They are great and encounter so many people. I like my pharmacist. He is very knowledgeable and helpful.

[RichardMEL]

Well said RichardMel!!     That is why we love you!

awww *blush* I go all gushy when a woman says that to me.... and it's rare.. so more please!

[devon]

Bass,

I am just a little a head of you on the path to dialysis.  My creatinine was 3+ for quite a while, like several years.  Then in 2006 it started to bump up slowly in the fours, high fours, and in 2008 it topped 5 and was 6 last week.  That's the first time it's been above 5.  I am struggling as hard as I can to postpone dialysis. I know I can't win the war but I can win each battle one at a time. 

I was very disheartened with that news last week but my doc explained that creatinine is not proportional.  So going from 5 to 6 wasn't the terrible event I thought it was.  Going from 2 to 3 is worse than 5 to 6, he explained.  Well, I feel a little better because of that.  I mention this because the lesson learned was that my anxiety was relieved by asking questions and getting answers.  The more I know, the more I understand.  The more I understand, the less anxiety.

From your post, I see you are very anxious and upset.  That is not going to help your situation.  You need to be here actively participating and getting answers to your many questions.  That will help you more than you can imagine.  You have much to deal with and having a place to come for answers will help considerably.

Jump on in, the water's fine! And, as you have found, we don't bite.

-Devon

[Ken Shelmerdine]

Bassman, don't ever feel worried or guilty about whether or not your condition is serious enough to post to this sight. We are all at different levels of kidney failure but the thing we've all got in common is this pain in he arse called dialysis. We all have various degrees of symptoms and we can all continue to support each other as we do.

 Hell if there was any kind of illness severity judgements made on this forum I would half been kicked out long ago. I am on dialysis but apart from restless legs causing sleeping problems, I have no other concious symptoms and full fluid output. Yet my GFR is 6%. How wierd is that? 

[paddbear0000]

Bassman, don't ever feel worried or guilty about whether or not your condition is serious enough to post to this sight. We are all at different levels of kidney failure but the thing we've all got in common is this pain in he arse called dialysis. We all have various degrees of symptoms and we can all continue to support each other as we do.

 Hell if there was any kind of illness severity judgements made on this forum I would half been kicked out long ago. I am on dialysis but apart from restless legs causing sleeping problems, I have no other concious symptoms and full fluid output. Yet my GFR is 6%. How wierd is that? 

No we don't all have dialysis in common! Some of us aren't even on dialysis yet.

[st789]

People here are nice bc we have compassion for each other suffered or suffering.

[annabanana]

I think you said it, st789. Compassion is the best word to describe it.