It aint all pretty

I generally don't let all this kidney disease stuff bother me... I'm too busy living to be worried about being sick or even the likelihood of dying young, which I don't really expect to happen anytime soon. People call me brave, but I suspect I'm more likely just oblivious most of the time... too dumb to realize I should be nervous or worried about anything. Ignorance is bliss they say, right?

Today I go in to Lahey Clinic for my catheter, which will be used to hook me up to the dialysis machine as I receive treatments... which will start tomorrow. I found out yesterday that I can't get the catheter wet... that there's a risk of infection... the kind of infection that will make you real sick real fast. The doctor I met with inquired about why I was choosing a catheter over a fistula... as if someone had even asked me previously which I preferred or explained to me the real difference and the risks associated with either.

For those like me who are oblivious and have no idea what a fistula is... its essentially a vein they add to your arm and it takes about 6-8 weeks to mature (to be ready for use). It is used as a connection to the body through which the dialysis machine can be connected... so you don't need a catheter. Unlike the catheter... once its established it has practically zero risk of infection and its okay to get it wet.

WTF?!

You mean to tell me that three months ago when you were all telling me that I'll probably need to go on dialysis soon... you could have set me up with a fistula and starting tomorrow I could already use it for dialysis and I'd still be able to take showers during this upcoming stretch of 90 degree weather and I'd also be able to take a refreshing dip into the ocean... but now I need to wait 6-8 weeks because no one thought of this sooner?

I repeat WTF?!

So I'm not completely oblivious. I get it... you fucked up... the kind of fuck up that if it were me at my job I might find my ass out on the street looking for a new job. Some shit just bothers the heck outta me.. and Lahey Clinic has been on a roll with me recently and its getting under my skin... and that's not good... you won't like me when I get mad... it aint pretty.

My name is Bil... and I have fucking kidney disease... (now pardon me while I try to go calm down)

Donor One

Not all things will go as planned... in a perfect world donor one's blood and mine would be swimming around in a petri dish right now... riding the waves... maybe with drinks in hand with little umbrellas in them... but by the time donor one's day was over on wednesday there was a concern. Nothing we can do about it. It is what it is.

Donor one, thank you for your generosity. Thank you for the herculean efforts you've gone through on my behalf. I know the reason you made the choice to try and be a donor, and I'm touched by your selflessness. I  like to think that I would be a better person for having a little bit of you in me. There is nothing I could say to truly express my appreciation.

Now on to donor two and maybe three or four.... there's no guarantees... just another day on the quest for a new kidney.

My name is Bil... and I have kidney disease.

P.S.

Added this little snippet from Donor One:

For anyone that has filled out the form, but put off phase one or phase two, please please follow through! I made it through to phase four, and it was a breeze. The donor coordinators are extremely helpful and organized, and there is nothing invasive involved in the testing portion. Thank you to everyone who has already taken action, you are all so brave. And for those of you considering, you will be surprised at how any fears you may have are completely addressed and relieved. Did you know that if we donate, and heaven forbid ever need one, we shoot to the top of the priority list! And there is NO increase in risk of renal failure, no medications to change in diet. You will live just as normal of a life post-donation. Heck, may people only have one kidney at birth and never know. and after all, this geek is worth saving!
xo 
j. 

Symptomatic

This has been the first real rough week in the history of my kidney disease. I've been noticing more and more a general feeling of not being well, but most of it has been kinda like that third or fourth day after you've been sick.. and you're feeling mostly well, but still feel worn out at the end of the day... but you carry on anyway.

Three of the last four nights have come with headaches, two with vomiting, one with a few hours in the hospital. I'm more tired and need to sleep longer. I've been late to work a couple times this week. At my doctor's appointment yesterday my nephrologist said she's willing to work with me for as long as she can on keeping me off of dialysis, but if it were up to her she would put me on dialysis today. officially my kidneys are now at 8% functionality.

We did a simple little test of holding my hands out in front of me with my palms facing out and we watched my fingers twitch. Apparently this is a sign of my nerves tweaking over the uremia (an illness that accompanies kidney disease). Anemia is another problem that comes from kidney disease and that has been robbing my muscles of oxygen for probably more than two years. Those who know me on FB might recall an incident while out bike riding and geocaching where I just had to stop and lay down and rest... I believe that to be the first real anemic episode related to my kidney disease. I also did a hike in February of 2012 up Mt. Chocorua and can recall as we approached the lean to where we were spending the night that I had an overwhelming desire to quit because my legs just couldn't go on. I think it took me 20 minutes to make it that last 500 feet.

But over the last four years of having kidney disease I never really felt any significant symptoms until this week. I'm not sure how I will proceed over the next two weeks... but I'm thinking my goal of not going on dialysis prior to my transplant may be a goal I no longer can afford to maintain. One unusual benefit of being symptomatic... once asleep, I tend to have better sleep than I have over the last four years... unfortunately this is due to a lack of getting up to urinate... yet another symptom of late stage kidney disease... reduced urination. oh boy... I gotta make a decision here.

My name is Bil... and I have kidney disease.

Phase Four

Phase one - would be donors fill out a form online. Phase two - a blood test/type is run. Phase three - potential donors are asked to go through some of the same testing I've gone through (I don't envy anyone who actually makes it to phase three). Phase 4- my blood and a potential donor's blood is mixed together to see if it gets along okay.

Today my coordinator called to ask me to come in on May 22nd for a phase four blood test. If all goes well... a transplant could be just around the corner. I'll keep you posted.

My name is Bil... and I have kidney disease

Waiting Game

People ask me how the kidney search is going. I hear very little about the goings on of the donor side of things. I almost have no idea about what is going down... I'm pretty much in the dark most of the time. What I do know is that there has been a good response from the myriad potential donors out there who have heard about my situation and want to help out. The first bit of information came from my coordinator Brenda, who basically said that there was a good response. I also know that a friend of my wife is at phase three of the process... having done the on line form and then having done some blood work, she now is being scheduled to go through the same kind of testing I had to go through to see if I could handle getting a new kidney, except for her of course the testing will be focused on giving up a kidney. I don't know if anyone else has made it this far in the process. The last bit of information I received was by way of Meg's sister, who attempted to start the process and was turned away supposedly due to the great number of people who volunteered already. I don't know if that means 6 or 60 or anywhere in between.... but that sounds like a positive bit of information. Meanwhile I continue to do the things we all do... and I pretend that each time the phone rings I don't secretly hope its Brenda calling to schedule the transplant.

My name is Bil... and I have kidney disease