2013 has started out good...

I'm not a very good blogger.  When I think of bloggers they are people who actively keep their blog up to date and always have interesting posts so that their readers want to come back often.   Sorry, but I'm not one of those good bloggers.   I'm old, and lazy and I get distracted and forget easily.   I've told multiple people in just the last few days that I needed to update my blog since I've had many people ask me how I'm doing and ask about how dialysis is working, but not I'm finally getting around to it.   I have no excuse since it's not like I haven't had time.  For the past month I've been forced to sit in a chair and do nothing for 4 hours out of every day.   I took that time to read more books in one month than I have read in 10 years combined.   I'm not much of a reader because I'm self diagnosed A.D.D and can't read more than a few pages at a time without my mind wandering.   But if I find a good mystery or a suspense book that requires my full attention to keep track of a bunch of details or characters I swing to the other far extreme and can't seem to stop reading.  When I do manage to put it down I end up dreaming about it when I sleep.   So between my A.D.D and my addictive personality, I don't get many books read.   But I figured since I have 4 hours out of every day to look forward to I would download some books to my iPad and read them to pass the time.   It worked out pretty good to keep me from going crazy but now that I don't have to do my dialysis during the day I'm glad that I'm not reading anymore, it was keeping me up at nights.   I'm sleeping much better now.  

Wait, I think I got way ahead of myself.   My last post was about getting on the transplant list and the expectation of starting dialysis.  

So let's start with my transplant update.   They haven't called me yet.    There, that was easy.   No, seriously that is the next step in my transplant process.  I'm just waiting on them to call.  Secondarily I am in the process of signing up for Medicare which surprisingly has very good benefits for Kidney disease patients.   Between Medicare and my own insurance a transplant would be fully paid for.    Also I get medicare benefits as soon as I started dialysis.  I haven't paid for anything yet so I can't tell how much of a benefit there is, but I'm sure the bills will start coming in soon.   Besides the financial side I am very blessed to have a few very good friends ask who they can call about investigating being a living donor for me.   It touches me deeply every time someone seriously asks about this and I appreciate each and every one of them.   I have a fairly good idea of how stringent the criteria to be a living donor is and I know that most if not all of my willing living donors will be rejected for one reason or another.   That doesn't stop me from being appreciative of their efforts and willingness to try.   To those people, you know who you are, I publicly thank you for the effort.

Now let's talk about Dialysis.  

So before all of this started my view, and possibly your view, of dialysis was someone sitting in a chair in a boring medical clinic with their arm attached to a huge machine that was literally pulling all of their blood out of their body, cleaning it and putting it back into their body.    My next dialysis revelation was learning that there was this thing called Peritoneal Dialysis which basically used the lining around my vital organs as a filter to diffuse the toxins out of my bloodstream into a solution that gets pumped from my abdomen through a tube.    This seemed very cool to me initially, it still is pretty cool although the coolness has worn off somewhat.  It wore off about the time I realized that I had to have a rubber tube permanently installed in my belly so that the Dialysis solution can be pumped in and out of my abdomen.   I have gotten as used to the tube as I'll ever get and it is only a partial hindrance to my lifestyle (no more belly flops into the pool).  I initially envisioned the PD (Peritoneal Dialysis) process to utilize a machine to do the pumping to and from my abdomen.   It wasn't until after receiving my tube and sitting down in my first day of Home Dialysis training that I found out I don't initially get a machine to do the dialysis.  There IS a machine that will do the dialysis while you sleep but nobody starts immediately on the machine.  Everyone has to endure the 'manual' process first to train ourselves on how to do dialysis in case of a power outage or some other catastrophe.  I remember thinking, "OK, how hard can the manual process be?".   Let me just encourage those who might read this and will be starting PD manually in the future, it really isn't hard at all.  In fact after a couple of days I'm pretty sure I can do it in the dark, in fact I did do it in the dark a few times.   The dialysis clinic told me early on that I could get on the machine (which is actually called a Cycler) after about 30 days of doing the manual process.   So my task was set, all I had to do was get through 30 days of doing the manual process and I could get a fancy Cycler of my own.   I even remember being initially excited, in a weird way, to start my dialysis even if I had to do it manually for a while.  My excitement waned pretty quickly.   It's not that the process was hard or that it was tedious (which it kinda was), or that we ran out of supplies a couple of times.   I can't complain hardly at all because after about a week the benefits of dialysis started paying off.   My blood pressure dropped from consistently over 140/90 down to a consistent 115/75.  After three weeks I would tell an improvement in my energy levels, I didn't get as dizzy going up stairs or being active longer than an hour or so.   So there was definitely some improvement.   BUT, I have to confess I didn't like it very much.   I have two primary issues with it.  First of all the process of diffusion through the Peritoneal lining takes time and during that time 2.5 liters of fluid has to remain in my abdomen while the process works.  So I had to basically carry around 2.5 coke bottles under my skin 24 hours a day.   I felt fat all day every day.  It restricted my movements. I couldn't throw a baseball or swing a golf club and I could hardly bend over and tie my shoes.  There was one good side to it, with all that fluid taking up space in my gut I wasn't eating as much because my stomach couldn't expand.   My second gripe was that I had to carve 4 separate hours out of my day to just sit in a chair and watch fluid drain out of my belly and then watch clean fluid drain into my belly.   From start to finish it took about an hour each time.   So every morning, lunch, dinner and bedtime I had to sit still for an hour, which is hard for me.   It doesn't seem like a big deal until you end up by yourself and everyone else has gone out to eat or you miss out on something else because you have to sit in a chair for an hour.  I just didn't like having to schedule my life around 4 sit downs a day. 

Enough complaining.  I really hate to complain because the process worked as expected, I just didn't like how I had to adjust.  I definitely improved during those first 30 days.    But I am glad that I'm done doing it that way.   As of January 29th I now have my own Cycler machine that I set up each night before I go to sleep and it does a whole days worth of dialysis during the night.  When I wake up in the morning and disconnect my tube I go about my day as close to a normal person as I can get.   I no longer have to schedule my day around dialysis.  And the best part of the change to the Cycler is that I don't have to carry around 2.5 liters of fluid in my belly anymore!   So my two primary gripes with dialysis were fixed overnight, pun intended.  I'm back to my old skinny self, I lost 6 pounds overnight, and my days are my own again.  

So when people ask how I'm doing I tell them that I feel much better.   Part of my improvement is psychological, in that the manual process was starting to wear me down.   There were days where I was depressed if I had to sit in that chair one more time. The other part of my improvement is that I actually do feel noticeably better.   For a while I couldn't tell because it was gradual.   But my proof came in the last week.   As most of you know I'm very active with my youth group at church where I help run all their sound and we try to be fancy with a cool stage and lights and a huge projection screen.   So once a year we have what is called Discipleship Now (DNow) where we partner with a couple area churches and bring in a professional band and speaker.   My part in this is that we try to make it new for the kids and overhaul the stage and make it exciting with lights and video and cool stuff.   I say all that to prove that between myself and my friend Jeff Sims we probably worked on our stage area 70 combined hours over 7 days time.    As I type it I realize that it's a lot but any normal person could do that if they had the time.   But what you don't know is that if I had tried to do that in December before starting dialysis I would have lasted about an hour each day and then would be sitting down trying to not pass out.   I didn't have any tiredness during the whole week and we worked hard building things and running up and down stairs and running cable and climbing ladders. 

Dialysis fixed me.  I'm feeling as close to normal as I've felt in a long time. I don't think I'm quite up to running a mile yet, but I want to start walking to get in shape so that I can hopefully snow ski with my family come spring break in March.   My plan up until a couple weeks ago was to take a bunch of books with me to Colorado and sit in the condo while everyone else skied.    There was no way that I had the endurance to even walk to the ski lift let alone ski, but now I'm optimistic that I'll last at least part of the day. 

So there you go, you are up to date.   My last month has been focused on dialysis.  I'm happy with the results even though it was rough getting here.

Stay Tuned...