外围体育投注

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ADPKD: Polycystic Kidney Disease

r/ADPKD

6
Posted by1 day ago

My husband has PKD and his eGFR is about 26, so I’ve been thinking a lot about transplantation. Now we have 2 different blood types so I know I cannot donate a kidney to him, so was thinking about looking into the paired donation process.

I get the basic concept, but just have a few questions. Say we find a match... do both transplants happen in the same day at the same hospital? Or within a few days of each other? This may be super irrational or stupid, but I’m just scared that I could give my kidney to someone’s partner only to have them back out and leave us high and dry. I do get that it’s the donors ultimate choice up until they’re put under, but it seems a bit more likely someone could back out when there is 2 donors involved, especially if the surgeries are not close together.

Another question I had is what was recovery like if both you and your partner went through major surgery together. Did you need help at home after the hospital or was it ok to manage yourselves?

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2 comments
6
Posted by2 days ago

Hi guys, few days ago my right lower back and right side flared up! The pain was awful! I immediately applied heating pad and took some tynenol. Next day, I went to urget care and they did not see any infection from my urine and was sent home. Doctor from urgent care advised pain meds and to smoke weed LOL!

外围体育投注The following day the pain stopped but fever came on along with chills, muscles aches. I thought it was covid! I took a covid test right away and received negative results in the same day.

My nephrologist finally put me under Cipro (antibiotics) . He thinks one of the cyst on my right side ruptured and infected.
Its been 4 days and I still have the fever with minimal pain. My question is does it take time for the antibiotics to work? How long? Should I even go back to work? I already missed 4 days.

Thank you !

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15 comments
4
Posted by3 days ago

Hello all,

My first post ever... I'm 42 M, living in Sacramento California. My eGFR is 17 now. I'm healthy otherwise, luckily, healthy enough to do a 3 day trek from 6k feet to 12.5k feet in the lower Himalayas in Dec 2019.

Two years ago, when my gfr hit 30, my doctor told me to start the process of getting listed. I had different insurance back then and started the process with them. They did all the tests and asked me to wait till my gfr hits 20. That happened Last year in July and I got a letter from CPMC San Francisco that I have been put on their list with a 4 to 5 yr waiting period.

Last year, I had different insurance so started the process again with UC Davis Sacramento and I should be hearing from them soon (to be put on their list), hopefully this week or next.


I've always seen the difference in the wait list times in different states. I'm wondering, now that I'm teleworking full time (IT job with State of California), I might be able to ask my HR to allow me to keep teleworking while I move to a state with a shorter wait list. I wonder if anyone else has done this? Anyone know what is the requirement for getting listed in a different state, how long do we have to stay before we're considered a resident, of do we just have to be living there? How long does it usually take to get on the lists in other states. For CPMC, all the paperwork and tests took around 2 to 3 months. For UC Davis, I started 1 year ago and am just about to be put on the list now.

Thanks.

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4 comments
3
Posted by4 days ago

I recently spent ten days in hospital after a cyst in my liver became infected and temporarily affected my breathing. The infection cleared up pretty quickly, although the inflammation level of my body took almost a month with antibiotics to return to normal.

When I was admitted to hospital on July 3rd, my e-GFR was 44%---6% lower than it had been in January. But after just three days of intravenous antibiotics it had risen to 60%, and then 66% three days after that. I was over the moon, as I hadn't realized it was possible for the e-GFR to improve so significantly (my previous readings since 2016 had always been between 50 and 56).

I received another e-GFR of 66%, and creatinine level of 1.2, on July 13, the day I was discharged. But just last week on my return to hospital for a checkup, my e-GFR had dropped a whopping 25% down to 41% (and creatinine had risen to 1.8). In just 11 days! Apart from eating a bit too much fruit on my return home, I'd been watching the potassium, phosphorus and sodium quite carefully during those 11 days.

Has anyone else experienced similar fluctuations in e-GFR (or creatinine) over such a short period? I did receive a slightly improved e-GFR today of 47% and creatinine of 1.6, but that's still a far cry from 66% and 1.2, respectively, just 17 days ago.

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15 comments
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Posted by11 days ago

I'm a teacher, and we are returning to full classes in about 4 weeks. I'm terrified of getting Covid and having it severely (and maybe permanently) damage my already weakened kidneys. I'm just wondering how others are feeling.

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14 comments
7
Posted by12 days ago

Since we have to try to keep it low sodium and low phosphorus I'm curious what you guys enjoy

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1 comment
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Posted by12 days ago

I'm 37. My dad, grandpa, and uncle all died from ADPKD. For the past several months I've had regular pains in my back around my pancreas and kidney areas. I don't have a primary care physician or health insurance. Given my history, should I just assume I have it? Also, is treatment worth the cost for someone like me? I feel like maybe, the best thing I can do is try to forget about it, and when my kidneys fail, just let it kill me. This way, at least I can have a decade of happy life left without the stress of doctor visits and expensive treatments I can't afford. In addition to not having health insurance I also really hate needles and get sick at blood. I don't think I could do haemodialysis and I don't think I could ever afford a transplant. What do you think? A bleak decision yes, but could ignoring it be my best option for the happiest life?

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8 comments
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Posted by16 days ago

外围体育投注I am 28 F and of yesterday I am at 21 GFR, so going forward every few weeks I’ll be doing labs so they can add me to the transplant list as soon as I drop down one percent to 20 GFR so I can begin accruing time. Ideally they want to remove both kidneys and transplant at the same time before needing to rely on dialysis.

If you’re post transplant how long were you on the list? Donor or cadaver organ?

If you’re still waiting at what GFR did you join the list or start dialysis?

I’ll be the 4th transplant in my family, everyone else was 45+ years old at the time of surgery. For some reason mines progressed a lot quicker.

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4 comments

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Information and discussion on polycystic kidney disease
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Created Dec 19, 2013

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