PKD, chronic pain, and a marriage

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kwburr

PKD, chronic pain, and a marriage

Postby kwburr » Thu Dec 07, 2017 2:29 pm

Hey all! I was diagnosed with PKD early this year. I was 20, now 21, and I’m the first in my family to have it. As you can imagine, it came as a shock to me, my family, and my fiancé. I was in the Marine Corps at the time and it was very hard for me to come to terms that the aim I was experiencing wasn’t something necessarily treatable and that I would be discharged because of it. I’m home now, back to civilian life, and I’m still learning to cope. Because of my career in the military, including long periods of dehydration and of the combat sports we consider an integral part of our service, my kidneys are worse than they probably should be at this point.

How do y’all manage the chronic pain, fatigue, and inability to do things you enjoy? I am able to do mostly everything I could before, but long periods of time on my feet increase my pain level a lot. Should I seek out a pain management doctor? I’ll be married in a few short months and my future hubby and I are planning on children, will I be able to juggle PKD, chronic pain, and a pregnancy? What’s y’all experience with that?

DevBrac

Re: PKD, chronic pain, and a marriage

Postby DevBrac » Wed Feb 07, 2018 3:31 pm

I am a 31 year old female that was diagnosed with PKD as an infant. I am sorry to hear of your diagnosis, but I do have a few tips!

1. drink a ton of water, it helps my kidney pain
2. no caffeine or birth control pills, both have been shown to increase cyst growth ( http://www.uwmedicine.org/health-librar ... e-pkd.aspx )
3. yoga - I have been doing yoga for about 15 years now and the abdominal strength helps to take the pressure off of the kidneys. Also it keeps your back strong and the twisting is really good as well. If you are not into yoga, I highly recommend you find a good intro class and learn the basics, then move on to power yoga or whatever kind gets good abs and twists in.
4. My husband and I are just now trying to decide if pregnancy is wise, it has its risks but almost all of the docs we have talked to say it's only slightly riskier than normal pregnancies.
5. cyst reduction surgery. Last year I had both of my kidneys operated on via 2 substantial surgeries to remove all cysts on the outside of the kidneys because for the past 4 years I have been feeling more and more fullness in my abdomen (with other GI symptoms due to crowding as well). This isn't a common thing to do for PKD treatment in this country but it should be. It has been life changing. I will start a new thread on it with doc info because I am so glad I did it.

Posts: 4
Joined: Mon Dec 10, 2018 6:30 am

Re: PKD, chronic pain, and a marriage

Postby garygrover » Tue Dec 11, 2018 12:08 am

Hi, I totally agree with DevBrac points and thanks for sharing this amazing tips.

Posts: 5
Joined: Sat Sep 13, 2014 4:29 pm

Re: PKD, chronic pain, and a marriage

Postby MoonMommy » Sun Mar 03, 2019 7:22 pm

I had 2 healthy pregnancies at 20 and 26. I was diagnosed with PKD at age 16, but still have 100% kidney function and normal blood pressure at 37. My children are 11 and 17 now. Both healthy, so neither has been tested yet. I sometimes feel guilty about potentially exposing them to this disease, but they know about it and don’t seem to resent me for it.

There is a great webex presentation about pain management on this website. https://pkdcure.org/resource/pain-and-pkd/

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