WWYD?

"Get busy living or get busy dying" - One of my favorite quotes from the movie Shawshank Redemption.

I received a prayer quilt this afternoon from my church. I was quite honored to get it and to see all of the people who sent well wishes and prayers for me. I knew a bunch of names, but there were far more names that I did not recognize. I have always felt that prayers are very powerful, and to have almost complete strangers wishing me well, I was very overwhelmed.

It amazes me how one day you have one feeling or emotion and two weeks later you could feel totally different - after all I was terminated from my job via e-mail almost 2 weeks ago. Now here I am getting a wonderful quilt and signed booklet from people who are sending me prayers and well wishes. I also have had some people reach out to me to see how I have been doing and helping to put me in contact with other people to help me find a new career path.

I have always wondered about the "WWJD" campaign and how it started or what would Jesus actually do in some situations, but to be honest I like "WWYD" better meaning "What Would You Do?". I used to work with a guy, I always thought he was a little goofy, but he really had some good points so I will leave you with this as he would often say "To be honest I think your real character is if you were in a room and all the lights were turned off and no one would know it was you who- however you would act at that point in that situation is your real character." So I ask you, how would you act in a dark room where people did not know it was you in the room?

That's not that bad daddy!!

"That's not that bad daddy!!" -- It's amazing how the words of a 6 year old can change things so quickly. I know the news that I received this past Thursday is not really that bad, and to some it may even be welcomed news, even my Doctor said if he was on dialysis it is what he would do. So what is this devastating news?? What is the news that is so shocking to me and seem to turn my world upside down?? I was told that the Peritoneal dialysis I am on is not working and that I will have to switch to Hemo dialysis.

Having a tube hang out of my stomach was an adjustment and now I will just have to adjust to having a fistula in my arm. The difference is when I had my next transplant, the tube would come out but the fistula will remain in my arm for the rest of my life. I know it is a pretty petty thought for what I have to go through, but for some reason it is really difficult for me and I am having a difficult time with it - after all it is my body and I will have to live with the constant reminder for the rest of my life.

It all comes down to perspective. I have to make some changes in my routine, but with those changes some really good things come!! My bedroom will not really look like a hospital room any more. I will be able to lie on my stomach the little things that I have missed will be returned to me.

I always seem to get a dose of reality every time I think things are tough for me. After I had my Dr. appointment on Thursday it took a little time, but I came to terms of the changes that are coming my way. A day later, I learned that a high school classmate of mine was just recently diagnosed with stage 4 lymphoma. So for me to have to change the type of dialysis I am on and have to live with the fistula for the rest of my life, when I put it into perspective, things are not even close to what others have to go through.

Thoughts and prayers go out to you Joe and your family.

Its better than the alternative

I cannot believe how long it has been since I have blogged last. I would like to say that a lot has happened and I have been so busy that I have not had the time to blog, but that really is not the case. The truth is, it has just been off my mind and every time I think about blogging - I get distracted by one thing or another.

Another reason that I have been away from blogging is that I think my optimism may have just about run out. I have tried so hard to be positive and open minded and willing to go with what ever is thrown at me during this whole process, but I think I have reached a point were at the very minimum I have to release some frustration.

If I hear "Its better than the alternative" one more time, I just may blow. How does anyone know what I am going through is better than the alternative? Have they gone through what I am going through? Have they experienced the "alternative"?

The reason for my not so jovial attitude is that the Peritoneal Dialysis that I am on is not working the way it should and there is a possibility that I will have to discontinue it and switch to Hemo Dialysis.

I apologize if I am letting anyone down and not typing the happy-go-lucky type stuff that I usually do but I just had to do it, if only this one time.

There it is ... do I feel better? I don't really know right now - I guess time will tell.

The road is done

"The road is done. You're home Joe..." - this was a post on a group page on Facebook, it was under a link to YouTube.com for the song "Amazing Grace".

I had met Joe 9 or 10 years ago where I worked at the time. Joe was one of the good guys, you could ask him anything and he would do his best to help out. He was a straight shooter and always got to the point, something I've always appreciated.

Joe passed away on Saturday July 31, 2010 losing his battle with stomach cancer he was 41.

I learned of Joe's passing as we (my family) were getting ready to go to the pool. The day was beautiful and although I cannot get in the water I can still grab some sunshine. There were clouds in the sky and as I watched my wife, daughter and son head into the pool, I looked up and saw a very prominent image in the clouds. I saw what looked like a very visible angel. There wasn't a face, just a body, a very round head, wings and just above the head a halo. It was amazing.

Even though I haven't seen or talked with Joe in a while I'll miss him.

There's just no easy way to hear about it and there's no easy way to talk about it, CANCER SUCKS!!

Joe is survived by his wife and 3 children ages 6, 4, and 6 months.

Therapy

As I entered the room a little before 7 pm, I could hear the piano loud and clear playing some great music. I took my seat at the table and was there about 5 or 10 minutes enjoying the sound coming from the opposite side of the room when I decided to look up and noticed it was not a piano, but rather a keyboard that was being played. A few minutes later, I looked over again and for the first time that the person playing the piano was a young, and I mean young guy. We found out later that he was only 18 and only had graduated from high school a month ago.

This guy, could play almost anything, The Beatles, Billy Joel, you name it, he could play almost anything and without sheet music - it was quite impressive. It was hard to miss an older guy sitting at a table by himself enjoying the music, I thought it was his dad, but ended up being his uncle. Although I am not sure if his uncle was there to help carrying the stuff in and out or if he was there just to enjoy the music, you could tell he was enjoying himself and it brought great pride to me knowing that I want to do those same things and support my children with what they decide to do when they are older.

It was a great escape for me indeed to meet up with a bunch of guys for our monthly ritual to go out and "relax" after our meeting. This month, the meeting was cancelled, but we all agreed we needed to still have our "meeting". I really have not had much of a connection with others since the middle of last year when all of this started to go into a downward spiral. It is nice to get out with the guys and talk about things that really when you look at it are important at the time, but with a little help from a friend solutions seem to be found.

It is usually toward the end of the night, but someone usually asks how everything is going, which generally leads into other questions about what is going on, or how the process works, or even about the supplies that occupy my entry way closet. Those small simple conversations are usually my release to help me feel better about everything that is going on. There is something about explaining it to others that helps me realize, that "hey, this isn't so bad and can certainly be worse!!"

Thanks for the conversation and company guys and a big thanks for helping me find an outlet to get it all out!!

My Big Fat Feet

Vanity has gotten the better of me. I surprisingly have adjusted to just about everything, everything but the way my feet look when I am retaining water. Probably more noticeable are my ankles which swell to a size bigger than grapefruit.

I really thought that I would be caught up in the tubing protruding from my stomach. I thought that would be the 1 and only thing I would have to overcome with this process, but when I look down and see my feet, it really bothers me. Actually I have adapted to the tubing pretty well and I really only notice that when I am doing an exchange.

I do have great news and that is I was approved to do nighttime dialysis. This means that I will be able to hook up to a machine at night and have dialysis while I am sleeping. By having this done, I will not have to do exchanges during the day, which means I can get back to a little more normal of a life instead of being hooked up to an IV pole 4 times a day!!!!

I know I will adjust to the whole swollen feet thing in time, and within a few weeks my life will be a little more normal until my transplant. I am thankful I am able to hold onto the little things and small victories as they come my way!!!

The Clock is ticking...

Not only is the clock ticking for me while I am on the transplant list, there is another clock... the clock of Medicare. Although I am eligible now to go on Medicare, after I have been on dialysis for 30 months, I am forced to take Medicare as my primary health insurance.

I think that it is great that there are systems in place to help people with the high cost of health care, I have a difficult time understanding why I have to take Medicare when I already have health insurance. The good news is I still get to keep my current health care, but it will drop to my secondary coverage.

The upside that I see is that I will have more coverage, not yet understanding what it is, or how the coverage will affect me. From what I understand, for the cost of of dialysis it is wonderful. As far as what else it covers, I am not sure, I hope it is also wonderful.

The downside is that when I am forced into the Medicare coverage, I am also forced into paying the premium for the coverage, so I will have the joy of paying for two health insurance coverages. I could drop my current coverage, but then my family will go without health insurance, since I am the only one eligible for the Medicare coverage.

Like I said, I am glad that there are systems in place to help with the high cost of health care, but to be forced into a program that I do not want is something I do not agree with. In my opinion, the coverage should be for people who are not on a company plan and would be declined if they applied for an individual plan.