I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: KarenInWA on February 15, 2014, 05:14:52 PM
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So, here goes... I stopped taking my BP med when my Rx ran out. My neph had doubled my dose, but I never got that filled in time before my last Rx ran out (I just doubled up the last Rx). Now that I haven't been taking any meds, my BP is great! 117/74 today! I am 2 yrs post-tx, w/a gfr of 17 due to a biopsy-induced injury. So, what would *you* do??
Background: I have been taking 120mg diltiazem for just over a year. I have a hard time finding a BP med that doesn't give me some dumb side effect, so after trying Losartan (cough), amlodipine (ankle edema) and Benicar (high K), this was the one we settled on. My BP was marginally high high. I always have good BP when taken at any other dr's office, but not my neph (he is older, and uses the old-fashioned BP cuff). So, he decided to double my dose at my last visit with him, which was back in Nov. My BP really didn't change when I started taking the double dose. I failed to get my 90-day mail order Rx for 240mg filled, so as my last bottle of 120's started getting low, I started taking just 120mg instead of 240mg. It ran out sometime around the Super Bowl.
So now, I'm getting GREAT readings on my home bp machine! Better than ever! I see my neph later this month. I think I'm going to start taking my BP at least once a day and go from there. Any thoughts?
KarenInWA
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Definitely take your BP morning and night and write it down. I have no idea if you can stop taking that med or not but more data is helpful when you see the doc.
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Crazy that doubling the meds didn't change your BP, but stopping the meds did? I am a firm believer in going with what you feel is the right thing to do, but BP is a tricky thing. Some people really tense up in the doctors office "white coat syndrome", but keep in mind that the old fashioned way is probably more accurate than the electronic device used at home (at least that is what my doc says). Since controlling your blood pressure is one of the best things you can do to preserve the life of your kidney, I would be cautious with changing things too much without your neph's approval. I was asked to bring my home machine in with me so my doc could take my pressure the old way and I could use mine to compare the readings. Turns out my cuff needed to be adjusted to make it more accurate. After we tweaked my home BP machine, the readings were pretty similar. I would suggest you speak with your neph about the readings at home and bring your device with you to the appointment so you can compare. I also used to check my BP at random places where they had a machine. Most of the pharmacies here have one. I hope your machine is accurate and you don't need the meds! Good luck!
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I was thinking the same thing. Check your bp at Walgreen's or local drug store just to compare.
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I can't check my BP at a drug store because those machines are only designed for the left arm, and I have a fistula. I can say that the only times my BP was marginally high was at my neph's office. Any other dr's office and it's been great! That has been over the course of this past year.
As for my BP machine - my BP was higher on it when I was taking the meds, and now it is lower. I did have it tested at my tx clinic last year when I first got it - I got it at the beginning of the year. My neph doesn't offer that service.
I have thought of visiting a local fire station and have one of them take my BP - but I've always been afraid it might give a higher result due to other circumstances... :shy;
KarenInWA
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If you take your BP every day at around the same time and write it down, I think the neph is readier to believe you. That is how it worked with me. Good luck in this!!!
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I wasnt going to write anything as I hate giving direct advice in cases like this. But since you asked and I think you may be playing with fire I will give my 2 cents worth.
First off as you stated your GFR is quite low so in fact you dont have a lot of room to screw up. You have a functioning new kidney that has been damaged but at least works. Why in the world would you take any chances??? High Blood pressure is one of the the single most damaging possible effects on kidneys. With your 17 GFR you cant even be a little BP high. You risk losing this precious transplanted kidney. DONT TAKE CHANCES.
Now first off , as a doctor I dont care for most cheap BP machines and even the better ones are not always accurate. I still beleive in taking BPs the old fashioned way with a cuff and stethescope. That is the only truly accurate manner. I also beleive you need to take BP in both arms if possible (although with a fistula that is difficult) and sitting and standing. It takes more work but often picks up the real BP rather than the same inaccurate reading over and over. I do my wife at home during dialysis by manual cuff ALWAYS. I have seen the auto machines be off by 30 to 40 points and even more. They are just not that accurate. On my wife I would get readings of 180/110 on one reading and later it would be 110/60 while by manual test it was 140 /65. Even a 20 point shift is quite significant. The differance between 115/75 and 135 /75 can be enough to kill a kidney over time if it is really the higher number. That is why your nephrologist uses a manual cuff. I would consider him wise.
Diltiazem is a funny drug in that if you are low renin/angiotensin it will help but if you are high renin/angiotensin it may not do much. It can also cause reflex sypathetic reaction and not lower BP. It is different with every patient.
The ARBs like losartan are one of the best for renal protection. I have never seen a cough with the ARBs so your reaction is strange . It is usually the ACE inhibitors like lisinopril that do that. The ARBs can cause high potassium . Sometimes you have to try a few to find the correct one.
If you were my wife or it were me, I would want to be on an ARB or ACE inhibitor if possible to protect that damaged kidney . I certainly would not mess around with BP meds on my own and play with fire. TALK TO YOUR NEPHROLOGIST. Discuss what you posted here and work this out with his guidance.
The kidney you save will be your own.
Addendum: As a general rule I dont advise asking people on the internet for medical advice. Even a doctor like me doesnt know you or your medical history so advice is inappropriate. Most people on the internet are not medical professionals and have their own agenda and beliefs that arent necessarily in your best interest. Be careful.
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You can buy a manual cuff with the stethoscope attached so you can take your own blood pressure the old fashioned way and not need three hands. It took me a bit of practice to learn what I was listening for. I don't use it every time but I have it.
I don't have any official reference for this but with my first transplant I was told not to take any ACE inhibitors with Prograf. I don't know if that is still the current thinking but I am not on any ACE inhibitors.
BP is my nemesis. I struggle with it all the time.
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Just for reference I'll post here the link to the latest RSN kidney talk episode, which ironically, is all about hypertension. I learned a couple of things I didn't know and found it interesting: http://www.rsnhope.org/kidneytalk-podcast/show-index/hypertension-a-silent-killer/
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I have an update!!!
I saw my neph today. First of all, I just have to say - for having a low-functioning injured tx kidney - she sure doesn't act like it! Yes, my creatinine is high at 3.1 (which is a new personal best since the biopsy/injury happened - last personal best was 3.2), GFR is still 17, and BUN is 40. But, those were the ONLY #'s that were not within normal range on my labs! My hgb hit an all time high of 13.1 (hct 40) and my K is a heathy 4.3, phos is an amazing 2.7! I am very happy with those results!!!
As for my BP, I brought in my latest BP results. I told him I stopped taking the diltiazem around the Super Bowl. He was impressed with the #'s. We decided to lay off of any meds for now, and I will continue to monitor my BP. If anything changes, he will prescribe benazapril, which I used to be on for years pre-D. My tacrolimus was upped by a 0.5mg a day (due to diltiazem raising the levels. Since I stopped taking it, my levels dropped just a tiny bit) so I will go for a blood draw for that in a week.
All in all a very good visit! My neph is impressed with how well my low-functioning kidney is working. Me too! :clap;
KarenInWA
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Fabulous news, Karen! :yahoo; You must sooooo relieved!!