Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Gone for a while & my blood pressure

Slickrock
Slickrock
Hey everybody!

I haven't been on this forum in a while. Life has been pretty interesting. I'm going to be changing jobs, which has added a lot of stress on top of an already stressful career. It looks like my current employer is going to have to replace me with four different people in one form or another. Mostly I'll be replaced with one new person with many of my responsibilities getting farmed out to mostly three other people. My employer is really struggling trying to figure out how to replace me.

My blood pressure has been a real challenge on top of everything else. It really bugs me when I mention my blood pressure to people and they immediately reply that it must be stress. When I was first diagnosed with high BP I was told it was because of stress. So, I did everything imaginable to reduce stress along with all the other things doctors want (i.e. exercise, lose weight, medications, etc.) with no real effect. After battling high BP for over 10 years I found out it was my kidneys causing the problem. Surely stress can have some impact, but nowhere near the numbers I've seen nor as consistent.

Anyway, my blood pressure has been climbing constantly for about the last nine months. Nine months ago I was controlling it pretty well by taking one pill. I'm now taking three different families of blood pressure medicine everyday. My meds have been switched up so many times I've lost count of how many different meds and dosages I've tried in the last several months.

My doctor just quadrupled the dosage of one of my meds last Friday, it is now Wednesday. Realizing some meds take about a week or so before taking their full effect I would expect some impact by now. Instead my BP is running even higher with numbers like 150/94 to 165/106.

I'm partly to blame too. I've gained some winter weight, which I'm plugging away at. Slowly. So... slowly. I also haven't been exercising as much as I should. Which I'm sure many on this forum can relate to when it is so hard to get some exercise when you don't even want to get up off the couch. It is a self-perpetuating problem.

I also started the Tolvaptan clinical trial in December, which has me feeling considerably better. The reason I mention Tolvaptan is because how often it makes me urinate during the night, about two to four times. Which makes me wonder about the sleep disorders which can contribute to elevated blood pressure, such as sleep apnea.

Perhaps I'm just venting, but it is all just so frustrating and worrisome.
deleted_user
deleted_user
In a way knowing that one has kidney disease can be a double edged sword because we blame everything on the kidney disease! Certainly pkd can and does cause bp to rise but so do a lot of other things and they can be controlled. Lose the weight, don't smoke, drink, or do drugs, and control the sodium. I have sodium in my diet but I admit to playing games. If I have for instance a hot dog for a meal will be really careful about the other food I eat that day. I've been on dialysis for many years and that is the only way I can survive, by not feeling deprived. I had a period of time with seriously high bps, dangerously so. No amount of meds. could beat it back. For me it was a sign of heart problems. Now my bp is low. The kidneys can be grossly large and the bp will not be affected because it's the cysts deep inside the kidneys that will cause the damage and make the bp go up.
deleted_user
deleted_user
PkdLin makes a good point. Sometimes doctors find one cause for High BP and then assume that's the only reason. Ask your doctor to check to see if there could be another cause. I have always been able to control my BP with meds. When I went on Tolvaptan 5+ years ago they had to lower the dose of diavan because my blood pressure dropped too low. Salt can make a difference too, as Lin said. It's hidden in many foods you don't think of as salty. Watch the sodium in processes foods, canned foods, fast foods, and eating out. I don't get up as much in the night as I did in the beginning on Tolvaptan. I think you just get used to the new normal. Good luck.
deleted_user
deleted_user
I'm sorry to hear you're having such a battle with your BP. Hang in there. Hopefully soon the Dr will be able to come up with the right meds/combination to get it where it should be.

Please share with us how the Tolvaptan has made you feel considerably better. What have you experienced?
jennyd36
jennyd36
It is very worrisome to not get blood pressure controlled. I've had hypertension since age 21 and even when I quit smoking for a year it never changed course. When I first started pain meds, my blood pressure meds had to be more then doubled. After 8 months of pain meds, my blood pressure has been 120/60 only taking meds every 3 days. So interesting!
Slickrock
Slickrock
The change in my meds last week have certainly started to make an impact. Yesterday I started getting that dizzy feeling when standing up too quickly. Today it turned into full blown blackouts to the point of feeling faint. So, I thought I should check my blood pressure.

Previously my BP was running around 160/100. Today it has gone like this:

6:30 AM 138/96
8:15 AM 112/86
6:00 PM 155/103

I normally take two of my BP meds (Nifedipine XL 60 MG & Losartan 100 MG) a little before 6:00 AM. Then about an hour before bed, or 9:00 PM, I take my third BP med (Terazosin 4MG), which is what the doctor increased last week.

I wonder if consuming all the water needed because of Tolvaptan could be diluting, flushing, or effecting my BP meds in some way. I drink in the neighborhood of about three (3) gallons, or 12 liters, per day. I asked my doctor about it once and he just responded, "No." But at the same time I'm not supposed to take my thyroid pill too close to a meal because it can get diluted, or washed away before absorption.

This isn't going to be a fun roller coaster ride.

@SolaFide, I'll start another thread about how Tolvaptan as affected me.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
deleted_user
deleted_user
I know that it is possible to have high blood pressure from other causes, but I developed high blood pressure in my early 30's and like you I was told it was due to other causes, because at that point my kidney function was nearly perfect. It became harder and harder to control my BP in the following yuears and I basically lived with a BP of about 145/90 for over 10 years despite going on hiher and higher doses of meds. When I finally had my transplant, I started getting very dizzy a week or so later. My BP was dangerously low! I was taken off ALL BP meds and have been off them for 2 years and have a BP of about 110/65. So for me, it was all about the kidneys, and nothing else that I did made any difference.
Slickrock
Slickrock
That's amazing! I'm glad to see the transplant had such an impact on your BP.