Hi! ADPKD patient new to dialysis, nice to meet y'all!

[BarneyRubble]

Hi,

My name is Barney and I've just started on dialysis.  I'm from southern New England, am a dad, and work with computers for a living.  In my off time I'm a musician (piano & keyboards, mostly), love reading & movies (especially sci-fi & fantasy), and spend as much time with my kids as possible (they grow up so fast!)

My journey started a long time ago.  My mom was first diagnosed with PKD when she was pregnant with me.  She received a living donor transplant when I was in my early twenties, and did very well - I honestly don't recall if she was ever on dialysis or not.  Many years later, 14 years ago, I was diagnosed hypertensive while getting the blood tests for my wedding - one thing led to another, and eventually to an ultrasound, and I got the pre-wedding present from mom:  I also had PKD.  For a long time we managed it with medication and a few tweaks to my diet - my creatinine levels hovered between 1.2-1.4 for a very long time. 

Mom, regrettably, has passed on.  Her kidney was still working great to the end, over 20 years - it was the side effects of the anti-rejection meds (especially the prednisone and cyclosporine) that we think did her in, plus the lovely PKD predisposition to aneurysms.

As time wore on, my creatinine levels rose slowly, and my kidneys grew a lot larger, but I was very fortunate to avoid the pain that many PKD patients have - even today, I have minimal kidney pain, and my kidneys have grown to about 4 liters each in size (yes, that's huge, yes, it sounds wrong, no, it's not wrong!)  A few summers ago I had "an episode" (we're still not sure if it was a ruptured cyst or a kidney stone) that sent me to the hospital in agony and pissing blood.  That healed, but the creatinine level rose past 2.0 and didn't come back.  I had another episode of pain this summer, which may have been another ruptured cyst or diverticulitis (another thing PKD as a predisposition to) - they couldn't get clear imaging to tell, and the lab results were inconclusive.  Creatinine level climbed past 4 and my nephrologist advised starting conversations with the transplant folks while I was still healthy.  Another episode in September, and we started talking to the transplant folks.  I started feeling (or more accurately, started noticing, I'd probably felt this way for years) extreme lack of energy, loss of appetite - y'all know the drill for ESRD. 

Earlier this year my labs came back with creatinine over 7 and an eGFR below 15, and my nephrologist told me "time to get a vein mapping and get going on dialysis".  We delayed it a little longer - we'd already had all the initial consults with the transplant team and I was approved for transplant, but not on the list yet (i.e. "find your own kidney and we can help").  We had already put feelers out to a few friends and family, but pulled out all the stops, using social media, our church, my workplace, email, etc. to spread the word that I needed a kidney, now. 

The response was overwhelming and heartwarming (and still is, every day).  Everything really seems to be falling into place, with a few hitches along the way.  We have a prospective donor flying through testing, and some possibles on the list if that doesn't work out.  The current plan is to tune me up as much as possible with dialysis for just a few weeks, remove my enormous kidneys, let that heal for several weeks (while on dialysis, obviously), and then perform the transplant.  If it all works out, I should have a new kidney and a much different waist size by the end of the summer.

Alas, things do NOT always work out as expected.  Because of the timelines involved, we went with a chest catheter for access (PD isn't an option, and we would've needed a chest catheter to get dialysis started quickly anyway by the time we started, because an AV graft or fistula wouldn't be ready in time and, hopefully, wouldn't be necessary if everything moves according to plan).  However, the chest catheter isn't giving us the desired flow, so it may need a redo.  Not how I wanted to start out!

[Darthvadar]

Hello Barney...

LOVE the Flintstones reference!...

On behalf of all the admins, Mods, and members, may extend you a warm  to IHD...

Visit us and post often....

Looking forward to hearing a lot more from you....

Darth, Moderator...

[Bambino_Bear]

 

[Ninanna]

Hi Barney and welcome to the site!  What a wonderful intro and we look forward to hearing more from you. I hope things go well with your donor testing

[obsidianom]

Welcome. I am a New Englander too. I grew up in Boston. (The RedSox are awful this year).
I wish you had gotten a fistula awhile ago as things would be easier now. Its never too late if you can. With all that is ocurring you might need it.
If we can help in any way let us know.

[BarneyRubble]

Obsidianom, if an asteroid ever comes close to earth we're just going to name it "Red Sox" because then it won't hit anything!

The fistula would definitely have been the way to go had we planned ahead better ... my levels dropped so fast in the last year it kind of took us all by surprise.  I've had the vein surveys done and could do one (or an AV graft) in either arm, but as a piano & keyboard player was really reluctant to go that route because of the potential for damage.  Obviously I'd do it if needed (I do value my life!) but didn't want to take the risk if I didn't have to, and my whole treatment team has been confident that I'll be off dialysis before the catheter gives out (so much for that, since it's going to need to be replaced after only two sessions, not drawing right!)

[Jean]

Hi Barney and     to IHD. I am a native born Connecticut person, transplanted to California. Sounds like you have your act together and I hope things continue to go well for you.

[PrimeTimer]

Welcome to the rubble of dialysis world, Barney! Stay tuned, this site helps to rebuild lives! I can understand your concern about a fistula possibly causing damage and being able to continue playing the piano. While he doesn't play a piano, my husband is in his 50's, has neuropathy from diabetes and a 9 month old fistula (upper bicep) and is able to SELF-CANNULATE! I help guide his hand to his "buttonholes" but he sticks himself and has gotten pretty darn good at it. He also types up long reports on a computer and has to drive around all day for his job. Maybe not the same as piano-playing but nonetheless, he is able to use his hands/fingers. Good luck to ya, please keep us posted! Sounds like you've got a good attitude going into things so hopefully the outcome will be good, too! 

[Poppylicious]

Hello Barney, and  to ihd!  Fantastic news about the donor situation.  Hopefully the chest catheter will play ball and everything will then stay smooth until transplant day! 

Poppylicious, Moderator