I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Goofy on July 30, 2009, 06:47:32 PM
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I had a blood test today and my creatinine was 7.0 and BUN was 75. What were your numbers when you started dialysis? I'm going to see a surgeon tomorrow to see about getting my PD catheter ready for dialysis.
Although I'm going tomorrow, I don't think I'll have the catheter exposed for a few months. Based on my numbers, I still think I have some time. My hemoglobin was at 12.2 and It hasn't been that good for a over a year. So I'm thinking to myself, that maybe I'm at standstill and can wait to out a little longer.
What were your numbers? (I only know US measurements)
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I have been on dialysis for over 3 years and according to my last labs my creatinine was 6.7. I don't have a value for my bun. I think that you may be sicker than you realize. It is better if you don't wait too much longer for dialysis
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My creatinine was (I think) the equivalent of your 5.8, but to be honest I've never heard of a bun level and don't know what mine would be. Anyone know what else BUN levels are called? Oh, just discovered we call it urea. The first time I noted it was 6 months after I started dialysis and it was 23. The last time I noted it, it was 12, and I have no idea what that all means. Going by most other things it's probably not good ha ha. I think, as others have said, you probably don't realise how sick you actually are because you get used to it and soldier on. Your decision though.
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BUN = Blood Urea Nitrogen
From the National Kidney Foundation (U.S.A.):
"BLOOD UREA NITROGEN (BUN): Urea nitrogen is a normal waste product in your blood. Bun is made in the liver from the breakdown of protein from the foods you eat and from your body metabolism..."
http://www.kidney.org/patients/plu/plu_hemo/appendixC.cfm#b
and this:
"Urea nitrogen (yoo-REE-uh NY-truh-jen) comes from the breakdown of protein in the foods you eat. A normal BUN level is between 7 and 20. As kidney function decreases, the BUN level rises."
http://www.kidney.org/news/newsroom/fs_new/10tests2diagnckd.cfm
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Thanks for your responses. The appointment with my surgeon had to be rescheduled. He had an emergency surgery. I have a new appointment for 8/10.
I have a neph appointment this Monday and I'm sure I'll hear the dialysis talk again. I know I keep saying this, but I'm still not convinced that I should start dialysis. According to the GFR calculator I used, I have 7% kidney function. Don't you think at that % I would be sick? One minute I say I'll start and the next minute I think I'm still fine.
Sorry to keep whining about this but I am really, really struggling with this. I know it will come sooner or later but right now I'm not sure if its time.
That's why I was asking what creatinine and BUN levels people started dialysis at. I know everyone is different, but from what I understand, 7% is pretty bad. My question is......then why I don't I feel sick?
I know everyone is saying it would be a good idea not to wait but I still can't totally convenience myself. I'd really like to hear what % of function most people started dialysis and how did you feel.
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I'm hoping to find out soon. I put in a request at my hospital to get the lab results from the er to the time I was discharged that was a month long. She said I may have just came in at the right time because they get rid of records on file after 10 years. I put that request in in late June and will take some time to get off microfilm, so hope to get it in August. I'm curious to know what it was. I only know what my kidney function was at the time when they told me in the ER.
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Thanks Chris! When you find out, I'd be curious to know. Especially because it sounds like if you went to the emergency room and maybe didn't know how high your numbers were.
So that's what I'm trying to find out. How high did peoples creatinine and BUN get before they started. From what I see, some people start sooner and some start later. Since I still feel good (although I know some people say I don't really know how bad I feel) I'm just trying to figure out if I'm at a higher creatinine and BUN level then most or if I'm still at a " I can maybe wait" a little longer stage.
For the others who have responded and suggest that I don't wait, please don't think I'm disregarding your opinions. In fact its quite the opposite. I trust your judgment because you have already been through this. That is why I'm on the fence. If I didn't find this forum, I would have still went on my merry thinking I'm OK. But you have really helped me realize I'm really closer then I think.
I would have never made an appointment with the surgeon if I felt your opinions were not right. Although I'm still undecided, you have helped me a lot with really taking this more seriously and not to be so stupid!
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The thing is it's not just about numbers. You can't equate yourself to other patients like that. The thing is the numbers really should be taken as a guide to how your body is. What matters more is how you feel and the symptoms you are seeing and if the medical professionals looking after you are telling you to start dialysis.
Some people can have high creat and BUN and feel OK (but still most likely need dialysis) and others can have lower creat/BUN and feel like absolute crap.
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Well... mine was 11 when I went into the ER (and it was 2.0 less than a month before that). It's now 3.9. I know dialysis sounds horrible... but it really does make you feel better - you may not know how bad you feel (if you've had kidney problems all your life) but dialysis can really change things.. and PD really isn't that bad, I promise! And we will be here to help and talk you through it.. but a creatnine of 7 sounds really high to me..
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When my creatinine was 6 and BUN was 93, I PUSHED my neph for starting dialysis. Basically, everyone is different. Normally, 10% kidney function is the time for starting dialysis, but someone could start at 15% and someone could start at 6%. PKD patients can start a little later than diabetic patients. It depends how you feel. When the BUN is above 90, you would feel different, and by that time, you may not need your neph to push you any more. You are fortunate to have a neph to push you. I always pushed my neph to act.
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Creatinine approximately 4 on US scale, eGFR around 16%. I felt worse than crap so was happy to start.
Can't remember the first time around but started then on an emergency basis, feeling not too bad as I recall but was in terrible shape.
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I think people here are being too polite.
I bet if Epoman were still around, he'd let you have it.
It's time to get off the fence.
From one website:
"Contrary to popular misconception, there is no advantage to being able to delay dialysis even if no symptoms of renal failure are felt once kidney function (glomerular flitration rate) reaches about 10%, and there may in fact be significant disadvantages for the patient in terms of mortality and morbidity."
http://www.igan.ca/id78.html
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That's why I like reading his old post Zach.
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Epoman would have kicked my butt - I refused to start dialysis until:
BUN 129
Creatinine 8.?
That being said, willpower/stubbornness is an amazing thing. Your body and other organs are stressed when you are walking around with a low GFR, which could easily spiral (high potassium being the scariest for me). I knew that I'd be on dialysis. I had my fistula 18 months before, I was listed, and I did everything proactively. But on that day in January, I wanted to go on vacation and I was fighting it, until my Nephrologist said, "Either you go on vacation with a dialysis machine, or you die. Choose."
FYI - it still took me 10 months to get my own dialysis machine at home - I had to suffer through 10 months of in-center feeling like crap. (And the first vacation I took was the IHD meet up in Vegas!)
My advice - don't push it, start when when you are symptomatic, and don't fool yourself into thinking that tired, grumpy and achy are normal (or like me, I swore that I just had a cold - a cold that lasted for months)
Remember, when you start in center dialysis, you also start the dialysis diet, which is beneficial for potassium and phosphorus. You usually aren't given binders until you start.
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I disagree Zach. If Goofy is honestly feeling ok surely that is a sign regardless of the numbers? I can't believe you feel ok with kidney function at 7 - that's when I started dialysis, but I didn't have any choice and certainly didn't feel ok. Although, I thought you said Goofy in another thread that you get tired and need to sleep more? That's not normal. I don't blame you at all for wanting to put this off by the way. However, having said that, it's actually not as bad as the prospect is.
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I really want to thank you all for your responses. Yes I have been more tired and sleeping more but I go through cycles like that. I'm constantly making excuses for every symptom. Whenever I feel sick, I think its the flu or if I'm dizzy, that its because I ate too much candy! I'm really out of control. All I want to eat is candy and fruit. My husband is always on my back for not eating. I think this is the first time in my 52 that I don't want to eat!
I know there are differing opinions here, which is fine. I take everyones opinions seriously, but like Hanify said, its still hard to justify starting. If I were continuously having symptoms that I may take that into consideration but right now they are not consistant.
I'm sure you are all thinking why does she continue to ask people and then when they suggest something, she doesn't listen. I keep thinking someone will say something that will trigger my mind to accept it. Just for example, I went to five, yes five, nephrrologists before I went on the transplant list. They all agreed that I should be on the list. I keep going to different doctors hoping someone would say I didn't need to get listed. Then one day, my husband asked me if I was going to continue to go to doctors until one of them say you don't have to get listed yet. That's what finally made me realize how foolish I was being.
I do appreciate your opinions but its funny, people like me make me angry. If you're not going to take my suggestion, then quit asking. Funny how its different when it yourself!
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If you get a transplant, you will need to take things more seriously if you want to keep that transplant instead of going doctor to doctor to doctor looking for an answer you want. By the time one does that, next thing you know your new organ has failed. So your mind set needs to alter a bit, we are not invincible. You may think it's not going to happen to you, then wham it hapens, so best to think it can happen and I better take steps to help or alter the course of actions on your body.
I hope that made sense, I'm thinking and typing at the same time.
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Keep asking Goofy. No one here thinks what you are going through is easy. As I said on your other thread though, I've since changed my mind and really think you need to get started. You say 'if I were continually having symptoms' I hate to break it to you honey - but you ARE continually having symptoms. You're just not listening to them. You've now mentioned diarrhoea, tiredness, sleeping a lot, back pain and dehydration. What signs do you think you are waiting for? These are pretty clear.
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In the UK John's Renal nurse said she will know by the way John looks when he arrives at clinic as to whether he is ready for dialysis.
Although his Creatinine levels have hit 800 in the past (they are 425 at the moment) in the UK they will not put you on dialysis until the very last minute. John had his fistula fitted over a year ago now and he is still holding out. He has days when he says he has the flu just takes paracetamol every 4 hours and then next day he is fine. Yvonne the wife
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What made sense to me was when my doctor said that if I delayed too long I could have effects of malnutrition since I was not eating, had no appetite (2 crackers would be lunch or dinner). One difference between us was that I had a memory of my first time on D when I had thought I was feeling OK but in fact once I started D I felt much better once I'd adjusted a bit.
Never easy.
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I am not on dialysis yet either.... and was thinking about how the toxins would effect other organs in the body.... Could it be that as the toxins buildup stress would be put on your heart, liver and other vital organs... Sometime damage is not felt until there is a real problem... I worry about my other organs especially my heart.... I have no heart damage now, but with increased stress that may change.... I am not sure when to start either.... I realize no one wants to but we will all eventually and why possibly put more stress on the other organs...... Is this correct thinking...??? I know my doctor just looks at the numbers.... I am effected on how I feel....
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Just before i started, my creat was 5.9 and my BUN was 56; GFR was 9. But I was also throwing up constantly and had no appetite whatsoever. It all depends on how you feel. And everyone is different. If you don't feel sick, than don't start. But I would definitely get yourself prepared, like have your PD cath put in. That way, when you do become sick and are begging to start dialysis, you will be ready.
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I just got my labs when I was diagnosed in the ER and in the hospital for a month from 1999. I just haven't looked at them yet.
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At present my GFR is 15 and Creatinine 4.1. My Neph said I most likely will not have to start dialysis until my GFR is 10. This is due to the fact that I display very few signs of kidney failure (except for feeling tired). There will, of course, be individual differences.
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I looked at the records I picked up and I may never find out what my GFR was. I will have to ask for records from earlier than what I asked for, but the records may have been already destroyed. I will have to cry again when I pick up my latest labs from the hospital Tuesday. The records I do have only checked for BUN and Creatinine a couple times and no GFR which seems odd to me. My be just one more notch to hate the neph I was assigned to in the hospital and had after discharged for a bit.
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Transplant centers in the U.S. generally use the creatinine to estimate GFR. There are many web sites that have the eGFR equation. One just needs to enter standardized creatinine value, race, sex, and age to estimate GFR.
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The hospital I was diagnosed at I use for getting my monthly labs done and the results gives a GFR value since 2000 with no added test. So Im thinking that there should still be atleast 1 GFR value, I just have to ask for earlier lab reports that I hope they still have. Other option is to ask my local nephrologist and hope the previous numbnut doctor gave her those results and that she can give them to me.Either way, more wait time.
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For my last blood test, my creatinine was 7.0. Tomorrow I'm going to have another blood test. I hope it doesn't get worse.