Do you have drain pain?

[Djangosmom]

Hi, I’m new here. I have polycystic kidney disease. The doctors say this is a hereditary disease, but I have no family history of anyone, alive or dead, ever having kidney issues. I am 62 years old, my kids are grown and I have 2 grandchildren, aged 3 and 6. They are the reason I’m not giving up! I was diagnosed in 2015 and I have been on PD for 7 months. Im having a lot of trouble with DRAIN PAIN and I havent slept all night in 4 months. I keep getting alarms that say “patient line is blocked.” I get this alarm on every drain throughout the night, and the pain will wake me up out of a sound sleep! My care team has had me reprogram my machine multiple times in an effort to solve these problems. We just changed it again today, so we’ll see how it goes tonite. I am using a Tidal program setting. The crazy thing is, I wake up EVERY TWO HOURS in anticipation of the pain/alarm. My body is so used to it that it’s starting to program sleep/awake cycles to match the dwell times. I’m wondering if I get this fixed if it will take me a long time to sleep all night again? Has anyone else had these problems?

[Ava2016]

I too have polycystic kidney disease I inherited it from my dad and his sister's had it too I have three children and was told that there was a 50/50 chance they would inherit it two of my children are fine but my youngest daughter has it but I was told that if neither of your parents have it you can't get it so I don't understand how you would have got it anyway Sorry about my story I was just going to reply about your drain pain because I used to get it a lot when I first started on the machine but as time went on I realized that it was only happening when I was slightly constipated so my doctor gave me something to take once a day and I was fine after that drain pain stopped I feel sorry for you because I know what it feels like and wakes you up every drain cycle thankfully I'm really lucky I've just had a kidney transplant eight weeks ago

[Djangosmom in reply to Ava2016]

Well, congrats on the transplant! How long did you wait? I've been on the list for two years, and it just seems like it's never going to happen. Hearing others' stories gives me hope. As for the hereditary aspect of PKD, my docs are baffled. I have two children, both grown, and my oldest, 34, is starting to show the same signs I did when I was first diagnosed: mainly unexplained blood in the urine at every exam. Her nephrologist says there is no sign of cysts, however, so I'm praying.... and they are keeping a close eye on her.

As for the drain pain, my team re-programmed my machine two days ago, and last night I slept ALL NIGHT for the first time in months! My brain kept waking me up, however, anticipating the alarm that never came. I'm not going to get too excited yet, because I've had good nights before but they didn't last.

Thanks for the support!

[Ava2016 in reply to Djangosmom]

Hi I was on the transplant list for two years and eight months I was put on the list when I started dialysis my two children who don't have polycystic kidney wanted to be my donor but unfortunately neither of them was a match for me which was a surprise that's why I had to go on the transplant list and like you I was beginning to think it would never happen so hopefully you will be as lucky me and won't have to wait to long

[RonZone in reply to Ava2016]

Hi, with PKD and looking for more good tips like this. Are you folks still active on this site?

[Djangosmom in reply to RonZone]

Hi! I am still here, but not as active as I once was. At the height of the pandemic’s first wave, I was offered a kidney from a deceased donor. I underwent the transplant August 6; 2020. The recovery has been difficult (I blame that mostly on age! I’m 64 now.) and I’ve had my share of challenges, but my new kidney (his name is Kevin) has never faltered! The problems have all been in other areas, like a blood clot in one leg and my colon getting ulcerated by one of the medications…. I am now a year + out, and doing well. Its so nice to be able to travel again and to sleep all night without interruptions, however that's just what you have to do to get where you want to be! PKD is no joke and I wish you the best. I would be glad to answer any questions, if I can.

[RonZone in reply to Djangosmom]

Hey, thanks a ton for the reply, that's great that you got the transplant. I'm surprised they did that during that period of time when "elective" surgeries were still iffy. I've heard other stories that transplants also have their "issues" though different from dialysis. So comparing dialysis with transplant, overall, is transplant better for your situation. Are there limitations to transplant life. Like do you have to stay away from folks to avoid getting infections (wait, we're already doing that for COVID, though that is easing up some). What lifestyle limitations are you experiencing compared to pre dialysis life and dialysis life? Diet, restrictions on travel, picking up things, activities, etc. Those are the kinds of things I'm wanting to know so I can make a decision to do transplant or not once I start PD. Oh, I'm 68 years old.

[Djangosmom in reply to RonZone]

Ah, so you are in my age range, too. I DEFINITELY think that post-transplant life is SO much better than daily dialysis. Even with all the stumbling blocks it’s still a superior quality of life. I had my transplant right after they started allowing “elective” surgeries again. The hardest part was I was allowed no visitors for the first few days, and then they allowed only one visitor for the remainder of my stay. It was tough waking up and having no one there.

I am VERY worried about Covid, and for the last 18 months, I haven’t gone anywhere except for medical appointments, and I’ve been doing a lot of those virtually. I’ll be damned if I’ve gone through all of this only to be taken out by a virus! I’m protecting this kidney with my life. Luckily, my husband does all the shopping and public errands. If I didn’t have him, I would absolutely have my groceries delivered.

I am much more mobile. I can go camping, travel in my RV and go to see my grandkids without hauling my machine, tubing, dialysate boxes, etc with me. I also don’t have to worry about peritonitis any more. That was a constant concern when I was doing PD, but it never happened to me. You just need to be very meticulous.

The anti-rejection drugs are tough….my hair started falling out and still has not returned to normal. I have to go in for infusions once every 8 weeks, but I don’t think that’s going to last forever. Interestingly, my transplant coordinator is also a kidney transplant patient, and he only takes two pills per day! He’s younger than me, however, and his transplant was 6-7 years ago.

I hope I’ve answered your questions. Let me know if you have more.

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[PracBob]

You're not alone. I have similar problems. I don't drain properly and always get alarms. Sometimes, moving around helps, and sometimes it doesn't. About half of the time I get severe drain pain. About all the clinic says is to not be constipated. It doesn't help. I am using a lot of laxatives.

Much of the time, I just give up and stop the treatment. I'm getting write discouraged and too sleepy and tired to do much during the days.

Does anyone have any suggestions that might help us?

[RonZone in reply to PracBob]

Let me know if you're still active on this site. Seems most posts are 2 years old

[RonZone]

Hi, are you still on this site? I'm due to start PD this next spring and would like some good advice on how to deal with some of the issues you have had to deal with.