Trial & Error... Still Learning.

 All in all dialysis is not a bad gig when you think about the alternative. You give up 12 hours of your week (in my case 8 hours) and in return you get to live. Who wouldn't choose life? I choose life every time.

I've been on the machine now for a little over two years and along with the 8 hours I give up each week I also have come to accept that following each session I will have a terrible head ache and will wake up the following morning with the sensation of having a mild hangover. Not fun, but still... life. I always choose life.

Recently I was on vacation. We took a little road trip through Connecticut and New York. I scheduled two sessions throughout my vacation so as to not risk feeling sick. I probably could have skipped and been fine, but why risk it, right?

For the most part these visit went swimmingly. In CT they were unaware of my special dialyser... oh wait... I forgot to tell you about my special dialyser. Let me back step for a minute:

When I first went on dialysis I was experiencing this sensation of losing my breath (imagine stepping into a freezing cold shower) every time the process started. After a few minutes it would go away. I had mentioned it to the staff and my nephrologist and they thought that was unusual so they tried a different dialyser (A dialyser is just a filter and it looks like the same kind of filter you might have in your house if you have a water purifier system). The new dialyser prevented that sensation so it was decided that I was allergic to the "normal" dialyser. Back to CT.

So as I inquired about their use of the special dialyser they didn't seem to know anything about it. I called back to my center and the manager there told the center I was at the name of the dialyser and so they reset the machine with that dialyser and I was off and dialysing... 45 minutes later than planned, but no harm no foul.

In upstate NY I asked the same thing... "You have my special dialyser, right?" They didn't seem to know anything about it. Again I called my center and they gave the name of the dialyser. This time the center in NY said "oh, well that's what we use on every machine." I looked around the room and could see that every dialyser was exactly the same as every dialyser back in Newburyport but mine. I know mine because it has a blue top and the "normal" dialyser has a dark grey top. I was unwilling to argue with them, I decided to just suck it up and let them use the normal dialyser.

I asked them to only take 0.5KG off of me and they were fine with that, my numbers suggested I could actually afford to have less. The session went fine until the very end as they were about to take me off the machine and I started cramping. This is very unusual for me unless they take too much off me. Turns out the woman messed up and somehow set the machine to take 3KG off of me instead of 0.5KG. Yikes!

Usually this would have had me pass out, I can't even explain why I wasn't half dead in the chair. But more importantly... I wasn't even slightly headachey. what was that all about? I always get a headache and the more they take off of me the more headachey I get... WTF is going on here?

I've been pondering this since it all went down. the only difference was the dialyser and the fact that they took too much off me. Taking too much off of me should have made me exceptionally headachey. why didn't it? It had to be the farquing dialyser.

I mentioned it to my center when I got home and the manager told me it couldn't be the dialyser.. the only difference between them was the method of sterilizing, otherwise they are exactly the same. They continued to use the special dialyser and I continued to get headaches.

Last week I saw my Nephrologist for the first time since returning from vacation. I told her the story and she agreed that we should at least test the theory. Last night for the first time we tried the "normal" dialyser. I came home headache free. I slept like a baby.

I can't call it science yet, but I suspect that this will be true on Friday of this week too. I'll keep you informed on how it all turns out.

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

2 years and 137 days

Mass General Hospital has taken a very hands off approach to my kidney disease. When I was with Lahey Clinic I would get regular phone calls from my coordinator. MGH never calls me, unless I call them or email them first. I'm not saying this is a bad thing... I'm just mentioning it.

When I first moved my care over to MGH they did a full work up on me. Based on what I had heard from the coordinator at Lahey and from my nephrologist I should have expected one of these work ups annually. When I hadn't heard from them by fall of 2014 I had decided to contact them in December to ask if I should be coming in for my annual visit. I was told at that time that MGH had changed their process relative to the typical transplant centers and only asked their clients to come in every two years. So I was to expect an appointment sometime in the summer of 2015 to re-evaluate my condition.

All summer I've been anticipating a phone call or letter from MGH asking me to come in for a full work up and re-evaluation. This week I decided it was time for me to make the first move and contact them. I sent an email to my coordinator and she called back about 20 minutes later.

MGH has once again changed their process. Now they estimate your transplant and don't have you come in until approx one year before estimated time of transplant. In my case being of blood type A in Massachusetts the average wait time is approx 4 years. I've been on the wait list for 2 years and 137 days (2 years and 139 days on the day I'm writing this). So in about 6 to 8 months I should be called in for the workup (assuming the average wait time doesn't change to 5 years).

This is actually the first time I've really had any inkling of an idea about when to expect a transplant. In a little over a year and a half I should be somewhere near the top of the list. Its kind of nice to know that. I can now work out how many more times I'll be able to enjoy eating sushi... an important thing to know when you love to eat sushi and know that after a transplant you aren't supposed to eat it.

I'm also not a guy who likes exercise... I'm just too darn lazy to make time for it. Hey! At least I'm owning that. But having recently turned 50 and knowing that surviving an operation like a kidney transplant can often depend on your physical health, I often ponder when I should start taking my lack of exercise a little more seriously so I'm prepared for the operation. I mean why exercise for a year and a half if I really only need about 6 months to get my 190 Lbs of twisted steel and sex appeal back into shape? Clearly I'm putting off the inevitable.

Knowing that I've been on the list for 2 years and 137 days allowed me to also estimate the number of needles I've had poked into my arm. I'm somewhere up in the vicinity of  520 and there's a path of tiny needle scars from my wrist to halfway to my elbow as evidence. A sort of history of my days on dialysis. A calendar if you will. Notches in my lipstick case... only its my skin.

Somehow this knowing about the approx 4 years has given me a sense of direction and purpose. A goal to actually aim for. Being over the half way mark upon finding this out is also a favorable place to be. I theoretically have less time left than the amount I've invested. That is a good feeling. Like taking a loan out on a car and being more than halfway to having it paid off.

That's pretty much all I have for today.

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

For Veronica Wherever She May Be

How easy it is for a year to fly by and without a blog post in almost 11 months. As dialysis has become such a normal part of my world and my kidney disease about as scary as clipping my fingernails, I have less and less to say about it and the overall experience. I suppose I wish there was some great news to share like I'm on my way to the hospital for a new kidney, but realistically its only been two years on dialysis. Here in Massachusetts it takes three to six years before you receive a cadaver kidney so I've got a minimum of one year and more like two to four more years of dialysis before my name creeps to the top of the list.

I remain generally healthy. I am now a full year in on my twice a week treatments as opposed to three times per week. My quality of life greatly improved with only going twice per week and my general health seemed to increase as well. dialysis is wearying. Who wouldn't want to go less than three times per week. In fact I recently asked my nephrologist if we could try something else new.

I asked her if we could try three times per two weeks on a schedule of Monday, Friday of week one and Wednesday of week two. She had to sit down and wipe the sweat from her brow at the very thought. In her mind like most humans time passes by in seven day cycles. To her the second week would mean only one dialysis session in a week. The thought made her nervous. For me time is linear and continuously moving forward. So I only see a pattern of dialysis, then three days off, then dialysis, then four days off, then dialysis, then four days off and the pattern repeats. In her version, one dialysis session in week two sounds like a big deal, but in the end its still only 4 days between sessions as opposed to the three days I go through now.

I'm still working on that with her, but there's a bigger problem than just convincing her. The dialysis clinic in the end is in the business to make money. That I don't go on Wednesdays anymore is already costing them money. It's not like they can fill my spot on Wednesday, nobody goes once a week. imagine if I threw this wacky schedule into the mix of not showing up on Wednesdays of week one and then only showing up Wednesdays of week two. They would essentially be earning the income of minus one patient each month relative to their full capacity. So they will never allow this. Perhaps they would have a year ago when I was only one of two or three regular patients on the third shift, but over the past year another local clinic closed and our clinic picked up many new patients and has a full plate of regulars. So I would almost need to find a struggling center and start going there.

Then there's the whole insurance industry to deal with. I've been told they would never pay for my dialysis unless I went at least twice a week. This sounds a little odd to me since my schedule of three times every two weeks would mean less cost to them. But that is a bridge I'll need to cross if and when I convince my nephrologist to go along with this new schedule and then also find a local enough clinic to take me on as a patient.

My name is Bil... and I have kidney disease (not that you care)