Here's to the potential for new normals

In case you had not heard... this week I heard from my transplant coordinator that there's about 5 or 6 people in front of me on the list. While you can't assume anything I did do some simple math and MGH does approx. 120 kidney transplants annually so if I assume they do approx. 10 per month then it's not a ridiculous idea to assume that I might actually get the call as early as late June.

On one hand this is great news. On the other hand no one should have told me this because it's infiltrating my every thought. I awake each day with a little too much excitement over the idea that I'm one day closer. I spend the day thinking about how my life will be different, better, more amazing post transplant. I imagine myself drinking a 24 ounce glass of cold chocolate milk, or orange juice, or heck even water and I don't mean just drinking it, I'm talking about glugging it all down in one fell swoop and maybe going back for more. I imagine myself buying and eating an entire musk melon (resembles cantaloupe) maybe even two. I can't wait to just eat a banana.

I dream of hikes, of actually getting this flabby body into some kind of shape resembling healthy. I imagine nights without waking up coughing due to the fluid that's moved into my lungs while I lie in my bed. I dream of going on a vacation and not having to schedule two or three dialysis treatments. I want to know what it feels like to not have dialysis again, to gain back the hours that were mine to do whatever I wanted and not have to worry about that whole dying without it thing.

Then I start to fantasize about the possibilities... in a way its like a second chance, a do over. Maybe it's time to get back to papier-mâché, I've put off that kind of thing for 14 years... I had reasons and excuses but now I kind of want to tell the world to get the F outta my way... I'm doing what I want to do this time and not always "the right thing" or "the expected thing". I used to have a "love me love my way" attitude about life but I sort of gave that up as responsibilities crept in to my world. Now nine years of less than great health has taken over the parts of my life that should have been my down time to do what I want to do. Sure my kids still need me, but not in the ways they did 10 years ago. There's plenty of time for me to be selfish and still be present for the people who need me.

Of course I'm getting ahead of myself... there's still at least a few more weeks of dialysis, possibly several. There's the few weeks of recovery, there's the first six months that apparently tend to be a bit of a rollercoaster ride as they try to sort out the medication regiment you need to be on. They tell me the prednisone will do a number on me.

I'm trying to maintain a calm sense of reality, but throughout the day these thoughts creep in and I just can't help feeling a little antsy about the idea of being done with the version of life I've been living for the past decade and taking the reins of my new normal and making it as extraordinary as I can.

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

Wait, Weight, What?

I don't know about you, but my weight can be a little bit fickle. Every spring I seem to drop a few pounds and every fall I seem to gain them back. In between the fall and spring I can fluctuate as well but usually in smaller increments. That was of course my M.O. prior to end stage renal disease and dialysis.

Those patterns continue now that I'm on dialysis, but now I also have to contend with my day to day weight changes. On dialysis its all about weight. We start with what we presume is our "dry weight", which is the weight we would theoretically be if our kidneys were working normally. As an example my current dry weight is considered 87Kg, or approx. 192 Lbs. Most days when I show up for dialysis lately my weight is between 88.5 and 89.5 Kg (195 - 197 Lbs). So I typically have to pull 2Kgs of fluid/toxins off during my treatments.

But sometime in September or October my weight will drift up to be about 89 or 90 Kgs. I don't usually notice the increase, but suddenly as the scale at dialysis reveals my weight as 90.5-91.5 Kgs it looks like we need to pull 3-5Kgs (7 - 11 Lbs). And as we attempt to get those fluids off of me we drop below my actual dry weight and I start cramping up during the treatment and have even passed out on a few occasions.

On the other hand the same thing could happen on any given weekend. Where I don't dialyze Saturdays and Sundays as a general rule, if I consume too many fluids over any weekend I can also gain a few extra pounds and then I really do need to get that extra fluid weight off of me.

Eventually spring comes back around and my weight drops again. And this is where I really get into trouble. As my weight drops it appears to me that I need to have less fluid pulled off, and not wanting to pass out I shoot for less... say 1Kg instead of 2Kgs. Well this leaves an extra Kg just hanging out in my body which finds its way into my lungs as I try to sleep at night and wakes me with coughing and shortness of breath. If this happens on a Friday night treatment and then I have one of those weekends where I consume a little too much fluid, I can find myself at the E.R. on a Sunday looking for an extra treatment, which can take 10-18 hours to arrange, while all I can do is wait.

All this talk about weight... I can't wait to get a transplant so I can stop constantly thinking about my weight.

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

Where are all the sunshine girls

I typically go to dialysis around 3:30 in the afternoon. Yesterday I was struggling after a weekend of dealing with fluid issues and so I asked if I could come in earlier than usual and they got me in around 11:15.

As I looked around the dialysis clinic yesterday I noticed how many people I didn't recognize. I noticed that there were very few there who's faces matched those of the people that filled those same chairs four years ago, even two years ago.

When I arrived four years ago I would see several elderly women who were coming off the machines or out in the waiting room awaiting their rides. We would chat and while no deep friendships formed we certainly engaged in many conversations. These women referred to themselves as the sunshine girls. They would meet up once every other month or so for a lunch on a Sunday.

About a year ago I moved my start time to about an hour later than it used to be and I really haven't seen the sunshine girls very much. Yesterday I assumed I'd see several of them based on my early start time, but there was only one sunshine girl there.

I knew one of the sunshine girls had passed away last year and another maybe 6 months before her, but there were about a dozen sunshine girls when I started... could it really be down to just one?

It's possible that some of the sunshine girls moved to first shift, but I know I've heard rumors of several deaths at our clinic in recent months, I just haven't been specifically aware of who had passed.

This also got me thinking about the ever changing staff at my clinic. Other than the manager, the receptionist, the social worker and two technicians, the staff is not the same as when I started. Since I began dialysis five nurses have left,  three or four regular technicians have left, we've gone through about a half dozen temporary technicians, our dietician has left and we've had at least three financial aid coordinators.

I don't know that I have any deep or meaningful point, but certainly we lose people along the way... doesn't matter what we're involved in and it's not always death that takes these folks away from us, but we do lose people along  the way.

Maybe soon I'll get a new kidney and I'll no longer need dialysis myself. Maybe some other guy or gal who only just recently started dialysis will wonder what ever happened to that guy with the really cool blanket. Did I ever mention my cool blanket? Maybe that's a good topic for next time.

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