Thursday, November 22, 2007

Chronicals of the PD warrior

So this is my third attempt at starting a blog (didn't have enough of a focused topic on the other two, which have been abandoned). This blog is going to be my personal experience of the whole dialysis thing, of which I have been much afraid for a very long time. Just that whole concept of being hooked up to a machine for my very survival. *brr. yuck*

So the whole saga started more than 7 years ago when I received the bombshell news that my kidneys were failing, and that I would be on dialysis within 5 years or so (as some you who know me may have noticed, that "or so" has been stretched to two whole years :)).

My choices were:
  1. Peritoneal Dialysis (4 times a day) - best option
  2. Home haemodialysis (8-10 hours every night) - next best option
  3. Haemodialysis at the dialysis clinic (2-3 times a week)
  4. Er... let's leave that be for the next 30-odd years at least, shall we?
I was assured that PD was the best, because we would be tricking the peritoneal membrane into acting like the kidneys. More or less. Less, really. But it provides just that bit of filtering of the blood required to keep:
  1. Me alive
  2. With major organs fairly undamaged
I finally had the surgery to install a peritoneal catheter about a month ago. And as drearily usual, I had more pain from the aftereffects of the anesthesia than I had from the actual incisions. Oh did I mention? This was laproscopic surgery, with a theoretical back-to-work time of 3 days. In less than 24 hours, I was off the pain meds for the incisions (but still on the pain meds for my feet - another long dreary story there).

*TMI Alert! People who are squeamish about bodily functions and fluids had better skip to two paragraphs down!*
36 hours post surgery - no bowel movement. 48 hours - still nothing. I was about to give in and call the doc, even though it was a weekend. Then, I felt that urge... but while the spirit was urging, the flesh was totally on strike, refusing to pass that huge rock of shite. After a bit of unadvised pushing, out came a big lump, along with a generous amount of blood from the straining. Did I mention said lump felt like a prickly pear, coming out? All the pain I was feeling from that point on was due to my poor abused shithole.

So, for 10 days after, going to the bathroom was a process fraught with pain (and the memory and anticipation thereof) - until my backside healed. I had my "bathroom book" at hand each time, and a worried mother who never failed to ask after my shithole. And I finally understood why people kept books in the bathroom - reading helps mitigate the pain of constipation. The day the bathroom book went away, we had a celebration! :D For those with chronic constipation - my heart goes out to you!
TMI Alert over!

Getting back to the topic at hand - the implanted catheter is just a simple soft plastic tube coming out of my belly. For one week after the surgery, the whole shebang remained untouched - my surgeon had made bloody sure that the whole catheter was properly strapped down - so much so, that when the time came to remove the original surgical dressing, the nurse almost had to resort to scissors (and this from a PD nurse who is all too aware that ALL sharp objects are a BIG no-no anywhere near the catheter). Which brings me to the Peritoneal Dialysis Unit. Of which there is only one in the entire Puget Sound region (or something like that) - it does mean that I have to drive into bloody downtown Seattle from my nice comfy digs WAY far away from the hustle and bustle of the city. That drive takes me an hour, door to door - when I can take advantage of the carpool lane into Seattle. I shudder to think of how long I'm going to be stuck in Seattle traffic once Amma leaves, and I can no longer use the carpool lane. :{

My nephrologist told me - oh, just call the PD unit a day or two after your surgery, they'll know what to do to take care of the catheter. This, after she had dinned into me that the catheter absolutely HAD to be flushed at least once a week, otherwise it would clog up, necessitating another surgery to clear it (and this may make PD out of the question because of scar tissue formation, etc). So I dutifully called the PD unit the day after the surgery. Only to be told "oh, we don't have your paperwork so we will likely only be able to get you in sometime the week after next" - and that was it. The nurse who talked to me that day sounded very brusque and totally unfeeling (I found out later that she isn't anywhere near as bad as she sounds). So I called my nephie's office IMMEDIATELY - she calmed me down, and said she'd send the paperwork immediately. This was on Friday.

Monday - I dutifully waited for the call from the PD unit. No call that day. So bright and early Tuesday, I call them again - have you got my paperwork? Can I come in this week? And they say, "No, you don't exist in our system, and can't until we get your paperwork from the doc's office, along with a blood workup. If you're going in to the doctor's office this week, have them draw that and send it off to the lab, then give us a call - we should be able to fit you in sometime next week." Again, I totally panicked, called my nephie's office - she said "Oh, I'm watching that paperwork go through the fax machine right now. Do you want to come in for your blood work at the same time as your EPO shot?" Man, you could have cooked an egg on my head,that's how FURIOUS I was; absolutely fuming! I almost screamed at her: "But YOU were the one who told me I HAD to get the catheter flushed at least once a week, and because of the lack of paperwork the nurse at the PD unit said she couldn't help me at all until probably the week after! What happens to the catheter?" I was thisclose to crying by then. "OK - does the medical assistant have time to draw my blood today? Tell me when, and I will be in."

So I went in that day, had my blood draw, and asked the doc why they hadn't sent the paperwork until the last minute. She wouldn't answer, just said "they have it now, so try giving them a call again in a couple days." I was still mad as hell, but I've made a habit of being nice to doctor's office folks, so I was still polite. Yoicks, but I think my mother learnt a few swear words that she was unfamiliar with, on the drive back home. So Thursday, bright and early, there's a call from the PD unit - "Can you come in at 7am tomorrow?" And my answer was - "Of course! Whatever time you tell me to be there, I'll be there!"

Anyone who knows me knows that I am NOT a morning person - I am an inveterate night owl who loves her sleep. So agreeing to be there at 7am was a sacrifice for me :P


Teesu said...

1. OK. I am VERY mad at the doc-nurse jingbang and this whole medical set up. Complete imbeciles, i don't care what anyone else says. Indifference in a country as rich and spoilt as the US of A is damn unacceptable.Maybe you should consider getting a kidney in India. Seriously. Explore? 2. I had that awful constipation soon after tara's delivery when the stitches were in the wrong place and despite advice to not strain I did. Please consider I held your hand during your constipated bout...:(

Shyam said...

Why do you have to keep going to the PDU?

Radha said...

Tees - thanks for the handholding :) Thought about kidney in India, but 1. I don't want to buy a kidney (it IS illegal, after all) and 2. I'm not sure of the insurance implications here for the (very expensive) meds I'll need for the life of the transplant

Shyam - because that's the only Kidney Center around here that has a PD training unit.

Paganpuppers said...

Radi, I know you've been struggling with this for such a long time. I just have to say how proud I am of you for being brave and doing what needs to be done. As you know I'm a hemo patient, not PD, but I can just imagine all your frustrations right now. The best I can tell you is that my experiences have been that one can get used to pretty much anything after a while. This really WILL get better. (hugs)

Radha said...

Pup, thanks for the support and encouragement. I think PD was completely the best choice for me - you haven't seen the way I reacted when I had to give myself an EPO shot. After the nurses stopped laughing, they agreed that I should go to the doctor's office every week for my shot :)

Renu said...

My first comment...I am so mighty proud of you!I have never heard you complain about anything though you live with so many restrictions..You are a role model! My second comment is: Next time you have trouble with your doctor/lab appointments PULEESE call me!!We'll play good cop, bad cop;o)I will give them a GOOD piece of my and your mind while you try to keep your cool!U have a longer relationship with them and its best I guess to not piss them off too much! But honestly, this is ridiculous. I hope this was an exception and I hope the rest of your experience is better. And I think you know that you can call upon me anytime of day for anything!My third comment is that like Tees, pl consider I held you hand as well during the constipated bout and the aftermaths from it!Having had a 4th degree tear and some 20+ stitches,with Raghav's birth, I do have a very fair idea about what you must have gone through...atleast its all over now, Phew!

Anonymous said...

Hi, this is my first time in your blog. I am so proud that you face this so bravely and even blog about it. I am moved to tears. I think I'll crib lesser from now on.
My dad-in-law (in India) had kidney failure too, he got a transplant and (touchwood) everything is absolutely fine now-- of course, there's medication for rejection, but miraculously the transplant has proven to be a huge success, because they found a close "match".
I really hope you get completely well at the earliest! I just included you in my prayers.