Renal Ramblings


Hello. My name is Amy. I'm a PKD patient. I received a life saving kidney on August 24, 2013. This blog is where I share my experiences and thoughts about the process of renal failure and transplant. I'm also a mom to three amazing little girls. Everybody loves them. They're awesome! They're young so we never talked about the PKD in a scary way, but they are super excited about mommy's new kidney and have welcomed it to the family.

One interesting thing they told me when I got PeeWee (the new kidney) was that because the nerves aren’t there like they would be in the old ones I may not be able to detect a UTI like I would’ve before. Because I’m now permanently immunosuppressed it’ll be easier for a UTI to take hold if the problem presents itself. So now I’m slightly paranoid about getting a UTI. I’ve had one since my surgery but that’s all that I know of. That’s all. Just thought I’d share that tidbit. I’ll keep you posted about if I get one without any symptoms. As I’m sure you’re super curious.

Me and PeeWee

I cannot believe I haven’t been on here in so long.  On August 23, 2013 I got a call from my transplant center that a perfect match had been located for me.  I got my new addition (PeeWee) the following morning. What a blessing!  It was an insane recovery.  I had never had “major” surgery before and so the recovery was like nothing I’d ever experienced.  It was slow and painful but I am enormously blessed to have amazing family and friends.  They came, the cleaned, they fed they babysat.  I could not have asked for more. 

In the days leading up to “the call,” my beautiful fistula, that had been working wonderfully since the previous November, had failed on me.  I went into surgery and had it repaired, but the surgeon told my sister that he expected it would probably fail again and basically that I am not a very good candidate for hemodialysis. Huge blow, right?!?!  Especially when you’re thinking you’re going to be waiting on the transplant list for at least 3 more years and you’re GFR has fallen to 10. 

The day the call came in I had an appointment scheduled with my nephrologist and fully expected him to say it was time to start D. I was feeling really sluggish.  My skin was super itchy and my labs were way off the mark. So the timing couldn’t have been better. Blessings all around. 

The biggest piece of all of this is that I had had a moment a couple weeks prior to the day. I was feeling really down.  And just was really uncertain about my future.  I was sad about not being the mom my 3 little girls needed me to be because I was so tired and cranky all the time.  I talk with God regularly but this day I really talked to him. I dumped all my stuff onto him actually.  I turned it over and said you know what, he’s the one that can fix all of this.  I decided that I needed to have faith that he loves me and wants me to be better.  And voila.  He showed me how putting my faith in him is all I needed to do.  I fully and truly believe that my faith is what got me through it. 

Being on the other side of it now is weird. Yes, I have a bunch of meds to take every day but overall I feel like a normal person again.  Just like people before me have said, you don’t realize how sick you were until you’re healthy again.  I did feel not right but didn’t realize how not right.  I’m so happy to have energy again and my head is so much clearer.  I’ve even made it through my first post-transplant cold.  And it wasn’t too bad.  I’m very blessed and I thank God for it. 

For those of you still facing this, please don’t give up hope. You can get your miracle too. 

Distraction Please

It’s been a while since I’ve been on here. Been busy busy busy. Good news is my fistula continues to work. I’ve really bonded with it.  I check on it every day and would be so sad if it weren’t buzzing along.  Otherwise I’ve been really busy with the kids and work.  I changed positions at work in January and am loving the job but it’s a lot of hours and a lot of responsibility.  I just haven’t had time to focus much on the whole threat of death that is this disease. I was getting pretty bogged down in it there for a minute, even hovering around martyrdom.  Now, sometimes I have to remind myself that I’m not the healthiest person around and that taking it easy is really a necessity.  Okay, so I’m selective in the moments when I use that as an excuse, but there have to be some benefits to having a fatal illness, I mean c’mon. 

I’m still feeling pretty well although when I look in the mirror the dark circles under my eyes in contrast to the glow-in-the-dark paleness I’ve been displaying for years seems to make me look a little bit dead.  But that’s okay. There’s makeup.  My GFR is currently 13 something.  So at this point my nephrologist is just waiting for me to get sick.  I read that they won’t force you to go on dialysis until you get to a 6.  Hopefully I can last that long.  I wish there were better stories online from people who chronicled their last couple months before dialysis.  It’s easy to get paranoid.  Sometimes I wake up and feel like a big puffer fish and think that it must be water retention and I will probably need to start dialysis that afternoon.  But then I pee a whole bunch and think, nah guess not.  

I suppose I will chronicle myself and hopefully it will help someone else out.  So without further ado, here are my current health stats: 

Not on Dialysis

37 years old

GFR: 13-something

Symptoms:

Morning swelling of hands 

Protein aversion

Nighttime itchiness (mild)

Fatigue (probably 3 kids and full-time job related)

Absent mindedness