I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: BASSMAN on April 16, 2008, 12:31:26 PM
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I enjoy the site very much and I spend a lot of time lurking and reading and not logging in to post. I have learned a great deal and have gotten a great many questions answered without even having to ask. I have learned to search for answers rather than posting a new thread. Nothing irritates me more than to post a question and have a long time member of a forum tell me to use the search button. I am also a bit shy about posting and a bit ashamed to even ask some questions. The reason for the shyness is the fact that I am relatively well in that I have 27% kidney function. I read about the issues most of the members here have been through, or are facing, and I think that my problems are trivial at this time.
:rant;
I get my latest lab report numbers tomorrow and I am worried that I have lost more function. I worry because I am retaining a lot of fluid and have had to increase my furosemide by three times the prescribed dosage to keep the fluid off. I am prescribed 40 mg a day and have been taking 120 mg. From what I have read you can actually take quite a bit more than that. I am already on a low sodium diet and stick to it fairly well. I am really beginning to wonder if I have what it takes to actually do dialysis when the time comes. I worry most about fluid restriction. I have no fluid restriction right now but I have recently started to try to limit my intake because of my fluid retention and I have a really hard time with it.
I feel really tired, almost to the point of exhaustion. I can only imagine how someone feels with a GFR of 20 or 15. It scares the crap out of me!!!
The whole worry of financial ruin is a rant for another thread!!!
I will let you guys know what my numbers are tomorrow.
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Your problems are definitely not trivial. Some people feel differently at different GFR. Keep posting. I think some people refer people to threads that are full of valuable information. The fatigue is overwhelming. The only people that understand, are those that go through it. Hope you get good news.
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Your problems are definitely not trivial. Some people feel differently at different GFR. Keep posting. I think some people refer people to threads that are full of valuable information. The fatigue is overwhelming. The only people that understand, are those that go through it. Hope you get good news.
Thank You! I hope so too but my body tells me different. I am curious to see how much has fallen since my last lab. I feel worse than I ever have.
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Bassman, I did the same thing and was very nervous about posting. Since I am at 15%, I thought people would think I wasn't sick enough. This group is so accepting and they have helped me learn so much. Your fatigue is all part of it. Your kidneys have lost 75% of their function, so you are tired. I struggled with the thought that I was being lazy. I'm not lazy, just too tired to move. Now I am better to myself and keep my special pillow on the couch! When the vomiting started, one nurse told me is was due to stress. This site told me different. I get more honest information here than at all the doctors. So, please post more. The burden will be lighter if you let us help. We will all be waiting to see what your new numbers are. I hope you can hold on to the function you have for awhile longer. Take care---post often :grouphug;
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no one understands how tired I am ------ IHD understands
no one understands how it feels to be so thirsty and no be able to drink------IHD understands
no one understands how it feels in the pit of my stomach when dialysis day is here-----IHD understands
best of all ----- when you need it most ------- IHD makes you laugh
please post---- we need you too
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hey Bassman I have seen you signed in a few times. Glad you have taken the next step. Nobody is going to challenge your medical posts so please post away...Boxman
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Bassman. There's nothing trivial at all about CKD. It's a really bad break and the exhaustion is overwhelming as well as all the other symptoms we face. The only thing that makes me feel a little bit better is remembering how much healthier I felt once I started on dialysis last time. I was scared as heck of the unknown of dialysis, just like you are, and it did take a little while for my body and brain to adjust but I was able to feel like doing things again. The worry of what we face is another hugely tiring factor and no matter what your percentage of function is, feeling like crap is feeling like crap. Right now I feel like an exhausted slug and a burdensome one at that.
Please don't feel ashamed to make comments or ask questions because I'll bet that there will be others here who think, feel or wonder about the very same things. Besides, we promise not to tell anybody.
Hope to hear more from you.
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Being a newbie, I'm sure I've already made mistakes. I know I posted a recipe in the wrong place. No one got on me about that and I appreciate it. The greatest thing about this site is that it's real. I can feel the real people writing the real words every time I get started reading a thread. I found the site late one night a few weeks ago when I was really feeling down about taking care of my husband. It was a shining light when I needed direction. I think you can post when you need to. These folks have very open hearts. And they are darn smart, too!
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We are pretty tolerable, we all make mistakes and we are not shy about telling you so, but don't let it bother you and don't take it personal. I know how you feel BASSMAN, I have more function than you do, and I feel the same as you, but I still worked my way up to Administrator position. Mostly because I am so lovable :shy; :rofl; J/K. Don't be shy we love to have you here.
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hey bassman
you got jump in feet first
the more the merrier :yahoo;
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I agree with Ang -- jump in! We're family here, and you are one of us!
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I agree with everyone here. Jump on in. The more information we put on this board, the less looking other patients are going to have to do!
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Bassman, are they checking your iron and hemoglobin levels? At 27 percent function, my kidneys stopped making epo, and I was so tired I could barely walk across a room. Make sure they are doing something about all the possible side effects! My docs started me on epo and iron transfusions a decade before I started dialysis - it made a huge difference for me!
I also retained a lot a fluid until they started me on a combination of blood pressure pills and diuretics. Don't let the docs write your symptoms off as normal - with the right treatment, there's no reason you can't get some energy back.
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It doesnt matter how trivial or silly you think your questions are , we have all felt like that. Will they think im an idiot if i ask about such n such, the answer is NO. We all understand the day to day worries, we all understand how hard it is , we all care. Sometimes its good to post just to get something off your chest , even if you dont want answers !
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It doesnt matter how trivial or silly you think your questions are , we have all felt like that. Will they think im an idiot if i ask about such n such, the answer is NO. We all understand the day to day worries, we all understand how hard it is , we all care. Sometimes its good to post just to get something off your chest , even if you dont want answers !
AMEN!!! You said it exactly right! Epoman started this site so people could be real, be frank, get real answers, rant, rave, rage, vent when they wanted to. There were only two major restrictions - be careful with vulgarity since some kids come here, and use the spellcheck. And this has continued to be so, even after his passing.
You are fortunate to be aware of your kidney's situation fairly early. When I finally got so ill that my daughter (without a driver's licence) had to take me to the hospital, my GFR was 25%. I had no idea what had been happening in my body. it swiftly fell to about 10% and I was catapulted to dialysis. Thank God I found IHD just before dialysis started! That is how I was prepared and empowered.
We are so glad for everyone who joins and participates. Keep on keeping on, Bassman!
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I too am pre-dialysis, yet feel very welcome here.
Information obtained here is helping me be prepared.
The site also provides emotional support and a helping hand so I don't feel so alone regarding the issues of ESRD.
I sure hope your latest lab numbers are good. Best of luck.
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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!
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:clap; Glad to hear that the numbers are holding. Keep on posting. You seem nice too.
EDITED: Fixed clap icon, Boxman/Moderator
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Hi Bassman -
At last check my creatinine was 2.6 I am due to go in for more labs on May 2nd. I too have problems with fluid. And I am anemic. I am not on dialysis yet. When it happens this will be my 2nd time.
I try to think positive and think that it won't be so bad this go around. I have a really great doctor who really takes the time with me. We sat and talked for about 40 minutes during one of my appointments. He is all about trying to make my life easier when it comes to my kidneys.
I try to keep focused on the positives...my blood pressure is like that of a teenager. ;D
You have come to the right place. I am a newbie here and I have to tell you...I have never come across a more welcoming and supportive group ever. ;D
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:grouphug; We're all in this together!
Bassman, glad things are stable. To everyone else I hope you all stay stable too!
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Good for you, BASSMAN! (Your numbers.)
re: feeling shy...when I first started posting here my husband's numbers were just like yours. ------I have learned SO MUCH here and I am so grateful to all the beautiful people on this site.
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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.
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Yay!
Your numbers are looking good. Just work on finding ways to keep it that way for as long as possible.
I"ve been stable with a creatinine of 2.8 for about five years. All we can do is our best within our abilities.
Good luck to you.
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I'm glad you posted and will be posting more.
I lurked for quite a while before posting.
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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!
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Well said RichardMel!! :grouphug; That is why we love you!
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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???
:o Doctor BASSMAN, Doctor BASSMAN!!!
PLEASE REPORT TO THE EMERGENCY ROOM!!!!!
Sorry folks, I have to run :rofl; :rofl; :rofl;
No seriously, Thank You!!!
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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 !!!!!
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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 !
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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.
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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.
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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?? :banghead; 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!
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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.
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Well said RichardMel!! :grouphug; 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! :)
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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
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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? :cuddle;
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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? :cuddle;
No we don't all have dialysis in common! Some of us aren't even on dialysis yet.
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People here are nice bc we have compassion for each other suffered or suffering.
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I think you said it, st789. Compassion is the best word to describe it.