APKD & ESRD

[goofball]

I was diagnosed with APKD when I was 16.  Now 47, I think my kidneys are shutting down.  I am seeing my nephro on the 24th.

All year I've been cold and tired, I thought it was my thyroid.  I saw my GP would after some test, concluded "anemia."  He's not too bright and didn't put together that the anemia might be a consequence of advanced APKD.

I urinate a lot, and it's very lightly colored.  My head feels fuzzy.

I'm not feeling too good.  I don't hate dialysis yet, but I can't say it looks appealing...

[Shaks24]

Welcome to IHD goofball   
A lot of good information here. I hope your Neph can nail it down for you so you can determine the right course of action. Good luck and keep us posted.

[goofball]

I will keep you posted.  I am afraid, and even though I am not alone, I feel alone taking this accursed road that is kidney failure.  At least here I'll have some company in my misery...

[Shaks24]

Absolutely my friend. I feel the same way but the fine folks on this site understand and give a lot of support and great advise. I am getting started on dialysis and it scares me too but we have to keep in mind that it will make us feel better and prevent us from even greater harm and hardship. We will be ok. First you need to nail down the source of your issues. Your neph will be able to do tests that show what is happening with a good degree of certainty. Has anyone tested your kidney function as of yet.

[goofball]

My kidney function hasn't been tested in a few years.  Is that the 24-hr urine test?  I'm seeing my GP on tuesday, I'm going to ask for it so that my nephro has the info when I see him on the 24th.

[goofball]

OH yes, I'm the only one in the family with APKD.  I'm a brand new mutant.

[Shaks24]

I am not an expert but there is a 24 hour urine test and there is also a blood test that measures your eGFR. The eGFR is your estimated kidney function. Between your lab results, your symptoms, your upcoming exam your neph should be able to get an idea of whats going on. I hope you get to feeling better soon. Is your blood pressure high?

[Deanne]

 

Welcome to the club no one wants to join.

You were diagnosed at 16, but it sounds like you haven't been followed by a neph all along? A neph would've known you were anemic and would've been checking your eGFR regularly. Were you trying to avoid knowing, or is your medical team lacking? I was diagnosed when I was 9 and by the time I was in my 20s GPs took one look at my labs and referred me to a neph, even though my eGFR was at about 90% back then. I moved a few times and had to change doctors several times and it was the same every time. GPs didn't want to touch anything to do with my kidneys. It sounds like your experience has been much different, where your GP was just ignoring your kidney function.

I hope you feel better soon! I just started dialysis this week and already hate it, but I think it'll be manageable.

[goofball]

My blood pressure is higher than normal for me lately, but I've been on ACE inhibitors since my diagnosis.  My nephro wanted to keep it on the low side.

I've been followed by the same nephrologist for 31 years.  I had frequent UTIs.  I usually get a yearly check up and since I thought my more pressing problem was my "thyroid" I chose to get checked by the GP instead of my nephro this year.  BAD CALL 

[Angiepkd]

Welcome goofball!  This is a great place to learn and share your experiences and frustrations.  I am 44 and also have PKD.  Not a new mutant, but another of many family members who have this disease.  I have been on dialysis since March, and do home hemo with NxStage.  So far it has been very manageable, but also time consuming.  Do you know if you can do PD?  I would've preferred that modality but my kidneys were too large and I had other abdominal surgeries that made it unlikely to work for me.  This past June I had both of my native kidneys removed.  They weighed 25 pounds together.  I feel much better, but the fluid restrictions are tough.  Hope you get some answers from the neph!  Keep us posted!  If it helps, I feel much better on D than I did in the months leading up to it!

[Poppylicious]

  goofball!  My Blokey is a mutant too, as nobody else in his family suffers from kidney failure/disease and they have no idea what caused his issues!

[goofball]

The mutants are still searching for their superpowers...

25 lbs of kidney OMG - that's a superpower for sure.  How don't know how large mine are but they cause me no bother other than some positional discomfort.  If I keep my giant kidneys does that mean I am spared the water restriction?

I did have a hysterectomy... not sure if that disqualifies for PD?

[Angiepkd]

The mutants are still searching for their superpowers...

25 lbs of kidney OMG - that's a superpower for sure.  How don't know how large mine are but they cause me no bother other than some positional discomfort.  If I keep my giant kidneys does that mean I am spared the water restriction?

I did have a hysterectomy... not sure if that disqualifies for PD?

I still made quite a bit of urine prior to having my kidneys removed, and had very few fluid or food restrictions.  Since the removal, things are much harder.  I am glad I had the surgery, though.  I can breathe, eat and sleep better.  Just really have to watch what I drink, as it all must come off during dialysis.

I don't think a hysterectomy disqualifies you for PD.  I had a combination of things that made me unable to try it.  Radical hysterectomy, hernia repair, 2 c-sections and my giant native kidneys.  Too much going on in that abdominal area I guess.

Hope everything works out for you!  Keep us posted!

[Sydnee]

I did have a hysterectomy... not sure if that disqualifies for PD?

Welcome nice to see you here.
I think that it's truly up to the individual surgeon and nephrologist whether someone "qualifies" for PD or not.  I officially start PD on the 16th. My surgeon and neph had no problem with my previous operations which were, 2 C-sections, 2 hernia repairs, a tubal, my gallbladder out and finally my left ovary + large dermoid cyst removed.
Now it could be that PD was "ok-ed" simply because my veins are so small.
I was diagnosed with PKD when I was 14 that was almost 25 years ago. I'll be starting PD before my 39th birthday.

Hope you find the info you want and the friendship/understanding you need. Fight for the type of Dialysis you want (not that anyone wants D). 

[goofball]

WOW guys, and I thought at 47 I was on the young side for the kidneys to go bust... I'm going to count my blessings here.

[goofball]

Back from MD.

Numbers
eGFR: 27
Creatinine 185

Blood pressure 135/88, too high for a kidney patient!