Polycystic Kidney Disease (PKD) Support Group

Did the pcp say anything about the bp (diastolic) lower no.?
It's kind of high considering the systolic isn't high. Just a thought but if you don't have a bp cuff maybe you should invest in one and take your bp at home. I've done that for years because mine was always outrageous when I had a dr. appt.. Since being put on bp meds. I like to take it also because sometimes it may go too low and need adjustments. Some of the bp meds. can slow your heart rate down and so also pays to know if that is a symptom of anything you're taking. My bp cuff also takes my pulse.
Don't forget that you always have friends. Maybe I'm predjudiced but my best friends are people with pkd. :)

Chastity,
Bystolic is a beta blocker, which will slow your heart rate. Side effects may include feeling lethargic and the strange experience while exercising that your heart rate will not go above 100 beats per minute.

Have you checked the PKD Foundation to see if there is a chapter near you? Just go to www.pkdcure.org and click on connect locally. Then click on your state and see what chapters are in your area. I'm pretty sure there's a chapter in the Pittsburg/Morganstown area and there was a walk there in September as well. It's a great way to meet others who are dealing with the same disease and share resources. There's something about reaching out and touching someone else who has PKD, especially when you don't know anyone else with the disease, that makes it so reassuring.

On the PKD website you can also find a bevvy of information, much more up to date, from the latest conferences, including the presentations on pain, clinical trials, etc.

Check out the site and please don't hesitate to ask any of your questions here as well.
Ruth

PKDlin,
ido have a cuff @ home, I try @ check it twice a day, its been high for awhile now, i just didnt want to start taking the medicine. The weird thing is on Oct 9, I went in to have a tubal ligation done after having my 3 wonderful kids, but with a 50/50 shot of PKD each time, i decided that 3 was enough. So anyways, I go in for surgery BP normal, have the surgery, wake up from surgery, and my BP through the roof, maybe from the pain they said, well one mth later its final, BP meds. What the heck? Maybe when they blew CO2 gas in my abdomen it ruptured something, Ihave no idea, I have been down and out ever since. Do this make any sense to you Lin?

ihavepkd,
Slow heart beat, lethargic, who the heck wants to fell that way with 3 extremely energetic kids? This is bad, I am so upset about this, you know it makes me furious, im young(28), youg people are supposed to be healthy, the woman who talked about her 9yr old son, how terrible, thats my biggest fear, I give this to one of my children, how does one handle that! I dont my family and I has attended the Pittsburgh walk 3 yrs strong now, but its about an hour and a half away, with 3 kids that impossible for seminars, chapter meetings, and support groups. have no family members with this PKD, no one else tested. They say dont test my kids cause of the risk of preexhisting clause for insurance and life insurance. Its really sad, my neph wont ever administer pain meds, i have to beg my pcp in which he wont up my dose change to something else, nothing, my neph makes me fell like I have a common cold not a life threatening disease. NEVER IN 4 YEARS TOLD ME MY NUMBERS? Thats bad! I do go on the PKD website that where i started but i want more, I want one of those fancy surgerys for pain, of course NO ONE within 500 of my home will even talk about doing it! Its like i should just lay in my bed, cover up and give up! Who wants to do that! As pkdlin said i wont let PKD beat me, I wont give up! Thanks for all youre help and advice! Hope to talk w you more
Chasity

Chastity,
Give the BP meds a try and see how they work for you. You may find that once your BP is in the normal range you'll be able to drop the Bystolic and the lisinopril alone will be sufficient to keep you BP nice and low. Right now your doctor just wants to get that BP down and is doing it the fast way by using more than one BP medication (very common practice)!

As for the surgeries, fenestration and deroofing, there is an outstanding PKD specialist at Harvard, Dr. Ted Steinman (tsteinma@bidmc.harvard.edu). He answers emails personnally so he may be able to recommend someone in your area who understands pain and PKD and might be a good resource in your specific area for the surgeries. He knows just about everyone so if there's someone in the Pittsburgh area, chances are good he knows them. You can also ask him for his latest pain and PKD presentation; he's by far the expert in the field!

I fully agree on not testing your children. There is nothing to be gained by knowing if they have PKD and a whole lot to lose (insurance coverage, potential for employment way down the line, etc.). Keep your kids healthy the same way your keep yourself healthy; lots of fluids, healthy foods, exercise, regular checkups, blood pressure checks (yes, even for babies and children).

Check out my post on pain meds; there is hope and there's more to treating pain the just medication (especially if you're breastfeeding the little one).

Alas in the long run, sometimes we end up being the ones who educate our nephrologists, but you won't walk in empty handed, you'll have plenty of expertise backing you up with papers from the PKD experts, etc.

Keep up the good spirits. PKD will not beat you or me or any of us. It's may be part of who we are, but it does NOT define us.

Gentle hugs,
Ruth

Hi, Chastity!

I may be wrong, but I'm hearing that you are needing a sense of community, which will give you strength to assertively go after the information you need.

This information not only includes medical information, but also information on how to "cope."

Given your family situation, you have a heck of a lot on your plate. Hopefully you can connect with people in your area you can provide that sense of community.

In the meantime, we're here!

Peace and Blessings!
CoachRichie

Hi Chastity, Keep in mind that often doses of bp meds need adjustments. Some do lower the heartrate (pulse) and I know from experience that can make a person feel bad. At first it's often difficult trying to get the meds. titred to YOU. Don't forget that dosing is often done by the books and that means a manly dose. If female or smaller person those doses may be too much for you. Too try to do whatever you can to lower the bp in addition to taking the meds.. so at least you may be able to cut back the doses ( with doctor's approval of course). Lin,.

Hi Chasity, I live in Huntington area. I'm 49 and after years of kidney stones and high BP was finally diagnosed with PKD. Have BP under control (after trying lots of different meds). Currently at 40% kidney function, but doing ok for now. I've seen several doctors since finding out I had PKD eight years ago, after talking to my first Dr. he told me I knew more about it than he did. So the best thing I think to do is educate yourself. Because ultimately your the one responsible for you health care. Hope you can control your BP, mine was high long enough to enlarge my heart. God bless you and your family.