I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: baked_apple on August 19, 2017, 03:00:48 PM
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I've recently been diagnosed with FSGS. My blood pressure is very high despite medications I've been given - I'm currently taking Lebatolol and Clonodine. What works for you if you have FSGS with high blood pressure - how do you bring high blood pressure down?
Has anyone tried a vasodialator that doesn't cause neausea? I tried Hydralazine and while it brought down my blood pressure quite a bit, it gave me nausea, so I stopped it.
My creatinine is now around 7, down from 11, in 7 weeks. Has anyone successfully brought down their creatinine to a normal-ish level? If so, how did you do it?
All tips and suggestions are very welcome!
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How long has it been since you were diagnosed? What symptoms did you have that made you go to your doctor? I ask because I was diagnosed with fsgs several years before I had to start using hypertensive meds (which worked well), but my egfr was not nearly as low as yours is now. It makes me wonder if a different type of med might be needed for a patient like you. I don't have an answer, only more questions! Sorry about that.
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Thanks for your response. I was diagnosed 3 months ago because of shortness of breath - that was my only symptom. Since then, my blood numbers have improved slowly, and everything is in range now except creatinine and BUN, but I still have periods of high blood pressure, and so far, none of the medications I've tried are helping very much. I wish there was something natural I could take instead of a prescription.
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You don't say whether you are on dialysis or not or what kind. Since I've been on D, my creatinine is off the charts (17 at last reading) and to my nephrologist it is a nothing burger as long as my other numbers are good. I am very muscular, and that has always made my creatinine higher than average.
As far as BP, for years I was on Amlodipine and I don't think it did anything for my BP. I was typically at 160-170/60ish. Recently I was sw)itched to a very low dose of Metoprolal and since then, my BP has been perfect. I just took it and it was at 123/63. And I'm on a tiny dose of it (12.5 mg daily). I'm a stickler for natural methods, but there doesn't seem to be anything in this realm that's natural.
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Thank you so much for this information! I will look into Metoprolal right now. But I’m really interested in what you said about creatinine. All my other numbers are fine except creatinine (7.16) and BUN (46). I’ve read myself that creatinine is not toxic and people live with high creatinine levels very easily. But my nephrologist only looks at creatinine. I’d like to understand this much more because I’m hoping to get off hemodialysis.
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It's not that creatinine is a "bad" substance or in itself, dangerous. It's a product of muscle breakdown. Too much creatinine is a sign that the kidneys aren't working properly. (I KNOW my kidneys aren't working properly or I wouldn't be on dialysis.)
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Ok thanks. I guess one question that I have is this … what would your nephrologist recommend for someone whose blood numbers other than creatinine are all fine – ie: someone who is filtering everything other than creatinine ok? Would he say I still need dialysis?
Thanks so much!
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It's a hypothetical I have never dealt with so I can't answer that. Sorry.
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Ok thanks. I guess one question that I have is this … what would your nephrologist recommend for someone whose blood numbers other than creatinine are all fine – ie: someone who is filtering everything other than creatinine ok? Would he say I still need dialysis?
Thanks so much!
My nephrologist always told me I'd know it when its time for dialsyis. I was at a point where I'd take a nap just after breakfast (on weekends, made it through the days at my job just fine). I didn't really notice that it was getting fairly bad, but then when I was in the hospital for another reason and they decided it was time. So maybe it would have helped if I if I had kept track of my overall health/energy level.
I think you should expect that dialysis will come at some point and maybe keep a periodic journal about how you feel so you can go back and read over how you feel and see if things are changing.
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I have given this advise many times but once more. The only thing you can do is modify your diet to be more kidney friendly.. when I was told it was time to start I modified my diet and went two more years dialysis free. I also have met a women who has been on the cusp of dialysis for seven years and is still not on dialysis. My other advise is stop worrying about your labs that's what the nephrologist is for. I kept telling my nephrologist I was waiting for a sign from god. What I never told him is that I thought symptoms were the sign to start. I have met people who felt miserable at rhe same numbers that other people were not sick. Everyone is different the secret is to wait till you begin to feel not well. It is possible to delude yourself about how you feel so some self honesty about how upyou feel is important push too long and the start of dialysis will be unpleasant. In addition pick your treatment and have the access points started asap. Given time to mature makes the start of dialysis easier.
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Everyone is different the secret is to wait till you begin to feel not well. It is possible to delude yourself about how you feel so some self honesty about how upyou feel is important push too long and the start of dialysis will be unpleasant. In addition pick your treatment and have the access points started asap. Given time to mature makes the start of dialysis easier.
I also feel if you are prepared and start dialysis prior to harming you health with side effects you will have an easier transition to dialysis. The fewer health problems you have to deal with the better and hopefully that will result in a better dialysis experience.
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I would agree with prior comments that learning dietary pointers is helpful. When my husband started having problems we eliminated bananas, limited tomatoes or potatoes to 2-3 times a week with small servings instead of him pigging out on them. I also normally was not a canned or prepared foods person so most was from scratch, fresh or frozen basics. His labs have stayed in desirable ranges with the help of phosphorus binders. He's now been on dialysis for 14 months - the first 12 was Hemo dialysis, one month in transition to PD, and the past month total PD. He had a lot of problems with Fistula development - I'd definitely plan on getting one early if that's going to be your method. He had a Hemo catheter for 13 months which is definitely not the best idea but he was lucky and the only infection was toward the end and when it was removed the surgeon said the only infection was around the collar holding in in place. His blood had already been tested and he'd been treated.
Because we are snowbirds and the center in Fl was not nearly as friendly or professionally trained and managed we decided PD was the next move. Currently we're still tweaking the process but he feels much better than he did on Hemo. He still urinates and more on PD than on Hemo the biggest problem currently is that he had a lot of problem with fluid around feet and ankles which was eliminated on Hemo and is back about 25% of the pre hemo level on PD.
I have been a caregiver in several situations with my mother, father, MIL, and two husbands who have passed. Finding the correct BP med has always seemed to be trial and error if you want to find the best one. I would monitor monitor monitor and document - time of med - readings at different intervals. At one time a Dr. wanted to add another med and after 30 days each was the average on 2 was 3 pts higher than on one. he changed to a 3rd med and that one did the trick