I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: marlinfshr on April 29, 2014, 10:53:08 PM
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I have a habit of trying to "second guess" the doctors sometimes as I feel that dialysis isn't a "one size fits all" type of treatment as we all react to it in different ways as well as have different reasons as to why we need it.
My point is that I have been doing very well on PD with just 2 short manual exchanges a day (prescribed) when I can conveniently fit them into my schedule. My numbers have been excellent and I feel great. I am even going to go back to working on a boat fishing this summer. I haven't needed any binders as my phosphorous and potassium numbers have been right in the middle of the range based on the Davita lab chart as to what is optimal. I also eat and drink what I want and to be honest, most of the things I eat/drink are on the no no list. But my numbers have been good and my dietrision just shakes her head and tells me to continue with what I do because it works.
Then came this last test. I decided to be really good and, hoping to see if my creatinine levels would go down any, I didn't eat any red meat for the week preceding my test and other then one bottle of lemonade I only drank water for the preceding week as well. Then came my 3 month blood/urine test and my PTH, which is always right in the middle as well, went a little high. It has been consistently on the lower middle range and this one test it came out a bit higher and out of the "good" range. So the DR ordered Calcitriol for me and now I need to take that.
I have liked the fact that I've only needed a few drugs and now another just got added. Doesn't it seem they would have taken another blood test first to make sure before automatically assuming I'm getting worse? Or is it normal to just start prescribing more drugs the moment a test comes back out of the good range?
I understand that once I get a transplant I'll be on meds for the rest of my life and have no problems with that at all. I have no problems taking drugs which are necessary such as my Lipitor and Plavix which my cardiologist said I can stop taking if that's what the transplant team wants but it just seems in this instance I now have to take these pills or else risk being called uncompliant and if my numbers go back down on my next test it will automatically be because of the new drugs I'm taking.
Perhaps I'm over thinking which I intend to do sometimes and really, what's the problem with another pill? It's just that I'm one of those that feels if you are doing great with a minimal amount of meds might as well stick to what is working and if one monthly test comes in outside of normal couldn't it possibly be a mistake? Another thing is that though my kidneys are weak and I do need a new one, as my creatinine and BUN shows, they are still working and I don't want to get them too used to having meds do everything for them possibly making them shut down completely.
This time I'm back on my normal diet again because it seems trying to be healthy screwed things up for me.
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Personally I like to repeat tests that are suddenly out of normal for the first time. If it were me I would push to retest in a month. You might want to see if its possible.
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I have a habit of trying to "second guess" the doctors sometimes as I feel that dialysis isn't a "one size fits all" type of treatment as we all react to it in different ways as well as have different reasons as to why we need it.
My point is that I have been doing very well on PD with just 2 short manual exchanges a day (prescribed) when I can conveniently fit them into my schedule. My numbers have been excellent and I feel great. I am even going to go back to working on a boat fishing this summer. I haven't needed any binders as my phosphorous and potassium numbers have been right in the middle of the range based on the Davita lab chart as to what is optimal. I also eat and drink what I want and to be honest, most of the things I eat/drink are on the no no list. But my numbers have been good and my dietrision just shakes her head and tells me to continue with what I do because it works.
Then came this last test. I decided to be really good and, hoping to see if my creatinine levels would go down any, I didn't eat any red meat for the week preceding my test and other then one bottle of lemonade I only drank water for the preceding week as well. Then came my 3 month blood/urine test and my PTH, which is always right in the middle as well, went a little high. It has been consistently on the lower middle range and this one test it came out a bit higher and out of the "good" range. So the DR ordered Calcitriol for me and now I need to take that.
I have liked the fact that I've only needed a few drugs and now another just got added. Doesn't it seem they would have taken another blood test first to make sure before automatically assuming I'm getting worse? Or is it normal to just start prescribing more drugs the moment a test comes back out of the good range?
I understand that once I get a transplant I'll be on meds for the rest of my life and have no problems with that at all. I have no problems taking drugs which are necessary such as my Lipitor and Plavix which my cardiologist said I can stop taking if that's what the transplant team wants but it just seems in this instance I now have to take these pills or else risk being called uncompliant and if my numbers go back down on my next test it will automatically be because of the new drugs I'm taking.
Perhaps I'm over thinking which I intend to do sometimes and really, what's the problem with another pill? It's just that I'm one of those that feels if you are doing great with a minimal amount of meds might as well stick to what is working and if one monthly test comes in outside of normal couldn't it possibly be a mistake? Another thing is that though my kidneys are weak and I do need a new one, as my creatinine and BUN shows, they are still working and I don't want to get them too used to having meds do everything for them possibly making them shut down completely.
This time I'm back on my normal diet again because it seems trying to be healthy screwed things up for me.
Hello marlinfsh,
Your post is interesting. I was in the same situation (numbers wise only) when I followed all the rules as recommended, my numbers were mostly all incorrect.I went back to eating my way, and the numbers went up, and remain very good.
I do believe and (IMHO) that we, or at least I, cause a chemistry imbalance within our body by restricting certain foods. I don't pretend to understand it all, but I am more aware of how good or rotten I'm feeling at any given time, and if what is suggested diet wise, makes me feel rotten, and gives poor numbers, why should I follow those diet restrictions! Our centers Nutritionist, also can't believe it when I say I'm not taking binders, I eat meat, potatoes with butter or gravy and sea-salted, buttered salted popcorn, and the occasional beer with that delicious popcorn.
Not saying that anyone should ignore their nutritionist or doctor, only that some folks are not in the 'average' listing rules they go by.
Can only conclude that we are all unique in our dietary requirements, with 'no', one size fits all, at all times, as you already stated, regards dialysis.
talker
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Idk, I tend to think your body gets used to how you eat, and it adapts itself the best it can to process those foods. When you change how you eat, you have a period of adjustment and detox/withdrawal, so that could affect your labs. You really have to give it more than a week for your body to adapt. :twocents;
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I see nothing wrong with asking the doctor if you can wait for a repeat of the labs before starting new medication. Especially if your numbers are only a little off not dangerously off. However, you should be aware that with almost any kidney disease there will come a time when you are losing even more function and may have to take other meds or change your diet or whatever. There's no way to tell what happened here. You changed too many things at once to know why your numbers changed.
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My Doctor always reruns blood work that comes back different than I usually Run.High or low. I only take 2 medications, Nexium and Renvrela. I'm always being asked if I haven't left something out as most dialysis patients take much more. And I haven't had Epo in over 2 years. The only thing I get on the machine is vitamin D. I eat whatever I want. In moderation. Portion control is key. One size does not fit all and there is nothing even remotely healthy about a dialysis diet. It hasn't been updated in over 30 years. And most people have no idea what a little cheese is. My Dietician and
never talk about diet. If it ain't broke don't fix it. I get my lab results the day hey come in. And I get the same results the Doctor gets. Just because my kidneys failed doesn't mean my mind did too!
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I get my lab results the day hey come in. And I get the same results the Doctor gets. Just because my kidneys failed doesn't mean my mind did too!
:beer1;
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Bottom line; it's your body.
One must listen to their Doctor but they also must be confident where that takes them. I am a skeptic since I experienced a major misdiagnosis and a Doctor who put me on Norco and forgot about it. I was up to six pills per day and wanted more before asking him what was going on here. "Are you still taking Norco?" has asked. I fired him last December and cold turkey'd off those things. Not a pleasant experience.
Since then I have resolved to find the best solution for me by listening to the Doctor (not a Nurse who changes the course of treatment) then find confirmation of the Doctor's advice. Before you take a new prescription, find out about side effects. Ask here. Don't be afraid to question the Doc or say no. By being defiant I managed to get off dialysis.
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It is more likely a result of having excellent residual renal function as to why you have not needed binders for so long. I went well over 6 years without binders, but then about 6 months ago, my PO4 levels began to creep up. I started on binders and have had no problems with them at all. I wish I could have kept my residual renal function for ever, but that is not reality.
You may want to quantify your residual renal function and see how it compares to times past.
In addition, there are other reasons for elevations of PTH. The correct response for elevations of PTH for a doctor can indeed include binders if not used previously. In addition, there are many other sources of PO4 aside from red meat. This is especially true with so many of the drinks on the market today.
is adding binders the correct response? Perhaps, but for your own peace of mind, you may want to look at some of the other issues as well since that could impact PO4 and PTH levels with or without binders. Once again, it may simply be a sign that you are losing your residual urinary function which is the expected course depending on your underlying disease but it is always an individual evaluation.
i hope this helps put things in a different perspective.
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Its funny that for us too low phosphorus is the issue. My wife is on tube feeds from cans for her entire diet so it is perfect. The phosphorus content in these cans is quite low so we end up having to add phosphorus every day. It actually got a little worse when we increased the time on machine and volume of dialysate . We found an ice tea drink with more phosphorus in it for her as she can drink tea and water. The last test was finally perfect.