It was just 3 years ago that right about now I would be getting out of surgery, and heading to ICU for the beginning of my journey with my new liver. To me it still seems like it was yesterday, while to some of my friends it seems like it was a long time ago; it’s funny how time wanders at different perceptual rates for folks. Not a day goes by that I don’t think about it, and that’s not because I have this absolutely ginormous scar altering the landscape of that train wreck I call my stomach. It’s because of how amazingly lucky and blessed I am to have been able to have been transplanted while so many still have not.

“Live this day as if it will be your last. Remember that you will only find ”tomorrow” on the calendars of fools. Forget yesterday’s defeats and ignore the problems of tomorrow. This is it. Doomsday. All you have. Make it the best day of your year. The saddest words you can ever utter are, ”If I had my life to live over again. ”Take the baton, now. Run with it! This is your day! Beginning today, treat everyone you meet, friend or foe, loved one or stranger, as if they were going to be dead at midnight. Extend to each person, no matter how trivial the contact, all the care and kindness and understanding and love that you can muster, and do it with no thought of any reward. Your life will never be the same again.”
~ Og Mandino

It’s been a pretty good 3 years, I have to admit. The last several months have seen me starting to lose weight again, ride my bike again, and ride with purpose and finally gain ground again rebuilding muscle and endurance. I think I can finally say that I am more on the recovered end of the scale, than the recovering end now; and I like that.

Georgetown University Hospital and nearby Washington Hospital performed 13 kidney transplants over what must have been a grueling 6 day marathon recently. It’s amazing that it snowballed into such a large endeavor since based on the article, it seemed to have started with just two people who had a pretty low chance of being matched.

There are currently 88,000 people on the National List waiting for transplant, and of that total number only about 17,000 will actually be transplanted. According to Dr. Keith Melancon, Georgetown’s kidney transplant director, predicts these procedures could enable up to 4,000 additional transplants a year.

The AP really did an amazing job with this story, and documenting the weeks of preparation for the transplant team, the recipients, donors, and their families.

Not much else to say, other than what an amazing Holiday for so many families. Here’s the full story on Oregon Live.

First off, for those of you who jut got spammed with 70 some odd emails… hehehe sorry about that. I just decided to import all of the posts from Deliver My Liver to here, and have just a single blog from this point. So now, with just a single blog under my wing again, all of my transplant postings are under the transplant category. I copied over all of the links as well, and they are on the Transplant Links page.

I fully intend to get back to the other links to, from the blogroll, but I won’t get to it tonight. It’s bad enough that the import left all of the CDATA tags in place around all of the posts and I had to go in a manually remove them all. Thanks Wordpress.

Poking around on The Huffington Post today I find a snippit about Steve Jobs possibly looking at a Liver Transplant, which linked to this article on Bloomberg.com. Jobs just recently took a leave of absence from Apple to get his health back in order, and didn’t really say too much about it in the press release on Apples website – but from all that I hear he’s a man who tends to enjoy his privacy when he can.

There has been a lot of play about his health in the media, and how Apple would survive if he were to leave permanently. Much noise was made, the stock fell, then rose, then it… well you get the idea. I admire what he has encouraged the company to do, and the direction that he has pushed Apple and pulled an Iacoca with them – but after all that he is just a man. Apple will survive without Steve, and what I think matters more than all of this, is that Steve survives all of this. I love my iPod and my Mac lappy, but who cares about Apple really? They didn’t save my life, my doc at UPMC did that when I got my transplant.

Any way, what I really wanted to say through all of this I hope Steve makes a full and speedy (as speedy as that can be) recovery if indeed he is need of a new Liver. God Bless Mr. Jobs.

Yesterday was the second anniversary of my transplant, and I have to say, all-in-all; I feel pretty good.

A lot of things really haven’t changed though, I’m still a good 20 + pounds overweight, I still tend to fall asleep in the afternoon just before or after dinner, and I am still tired quite a lot. Although, none of those things really affect my day to day health, so in that regards I couldn’t be happier. I am healthy – although if you asked folks who know me they’d probably tell you I eat too much candy, and don’t even get me started on popcorn. But you know, none of that seems to matter.

I have been the weight I am now for at least 10 years, my gut may be a little bigger than before as muscle shifted around and then up and left – but overall it’s about the same. Even when I was racing on the track in Portland, I still had a gut, and I was pretty fast. Chris and I would train for a couple 3 hours every Sunday morning, and then race on Thursday. We were part of a team for a while and we rode regularly with them too – so it’s not like I wasn’t in shape. Still had a gut. Still, it’s not like it’s my riding buddy, I could live without it but I’m getting to the point to where I don’t think it’s going anywhere anytime soon. It’s hard to exercise when you lack the energy to do it….

Still. 2 years and counting……

Prior to January of last year, I had known somewhere in this ball of twine that is my brain, that I would be in need of a replacement liver. A fact that gave me a nut-shot in the summer of 2004 while visiting family in Florida, leaving my life focused on either being sick or waiting to be sick.

That all changed one relatively benign afternoon with a phone call to my desk. Since then I have been in a constant state of recovery, dealing with the fact that I am a 36 year old former track sprinter who used to be able to propel himself at speeds generally reserved for cars; one that is now out of shape and over weight and for whatever reason can’t seem to get rid of the tire, and stay on a bike regularly enough to be able to ride the 5 miles to work and home without being exhausted at the end of the trip.

I have no muscle mass any more, and my energy level is about as consistent as the flight path of a Bat. Some days I am raring to go and do so, all day. Other days I will get home and pass out in my chair before and after dinner. Sometimes the stretches last for weeks, sometimes they last for days before flip-flopping. It’s very discouraging and frustrating.

This is where I am. In a sort of physical limbo. I feel good. Other than my INR levels coming back all wonky lately, everything is a-ok, so I really can’t complain. the liver is serving me well, and I am, all things considered; quite healthy. This winter is going to be a brutal one though, I can tell. I’m not talking about the weather either.

If I don’t find a way to get past this obstacle, I’m going to wind up looking like the Stay Puft Marshmallow Man from Ghostbusters……

As a side note… someone really needs to stop letting theior kids build the movie sites…. check the Flash for the Ghostbusters site, I think it’s as old as the movie.

I received my Value Card the other day, and it is indeed just as simple as a debit card/credit card. I received it just after a couple of days from when I spoke to the Social Worker, and she was very helpful. The details of the program are simply what I stated in my last post, so there isn’t anything new to update about them.

Once you receive the card, it’s just a matter of activating and you are on your way. There is a form for using the program with your mail-in prescription service as well.

One thing to mention is that if your clinic wants you to not take the generic version of Prograf when it becomes available, you will have to have your coordinator or Doctor contact your pharmacy to make sure they have a standing order to not supply you with anything but Astellas Prograf. I am not sure when this is going to become available, but I will being doing this next week so I know it is on file before my next refill is needed.

I would urge anyone taking Prograf to look into this program – it’s worth up to $250.00, so there isn’t any reason not to – you can use the extra dough you save to get that nifty new iPod touch…..

I spoke to my coordinator today, and got a little bit more information about the Prograf Value Card Program that I mentioned in my last post. She told me that she would get me in touch with the clinic’s social worker so I could get setup with the program.

I don’t have the full details yet, but she did say that it is an assistance program set up by Astelas since many of the Transplant clinics are recommending that their patients not use the generic form of Prograf when it comes out. Yes, you read that correctly. I was specificaly told to not use the generic version of Prograf when it becomes available later this year. The reasoning for this is that the potency levels are not expected to be the same, or something like that; and since it is an essential drug for so many, they don’t want to risk it? I’m not sure about this bit. The cynical side of me thinks that is a crock of bull, and it’s just the big pharma company getting their way. The other side can see where hey would be cautious, and I for one would be very happy not to have my life goofed up by a new drug.

The Value Card Program will likely work like a debit card, so you can just use it every time you pick up your Prograf script. It is also only targeted to those who have private health care, and not those who are on government assisted programs – whether or not that would include the VA, I don’t know for sure but would assume as much.

There are still a lot of questions and unclear aspects just yet, but I will post more information as I get it. In the meantime, I would encourage anyone who is interested to contact the social worker attached to your hospital or clinic.

I received an email the other day from a gal who was asking about how I was able to raise the money for my transplant. A while back I posted about how much it cost for me to receive my liver, and while it was a lot of money; the vast majority of it was not out-of-pocket for me. There have been a lot of expenses not covered by insurance, but so far it has been manageable. And thanks to a very generous group of friends, family and coworkers we were able to navigate the waters of fundage safely.

I cannot even begin to fathom the idea of having to raise money just to get listed or beyond that to pay several hundred thousand dollars to have the surgery. However, the day after I received another packet of information from Transplant Experience, and it contained just this kind of information: so I am posting it here.

• National Foundation for Transplants
• National Transplant Assistance Fund
• www.pparx.org
• www.needymeds.net

Be sure to check out the resources page at transplantexperience.com for information as well.

Some of the big pharma companies also offer rebates and assistance. I have seen information from Astra Zeneca that they can help with medications costs, and I also received information from Astellas about the Prograf value card program, which can offer up to a $25.00 savings on 12 refills.

As always, the hospital transplant staff is an excellent and invaluable source of information. I spoke with a social worker about fundraising before my transplant and honestly it was the first time I even thought of it. If this is a need of yours or someone you know, I would start there and move to some of the links I have collected here…. I hope this can be of some help.

I’ve started trying, in earnest, to get back up off my arse and onto a bike again and I tell you what it is hard. It’s not hard because I am out of shape ot lack the desire to do it – it is hard because the mass of muscle that was once entrenched within my legs has fled.

Over the last 3 weeks I have ridden to work a few times, and the first week I rode in 3 times, and I tell you on the way home I simply ran out of juice. It’s not that I was tired, because realistically that’s not it. It’s simply that I run out of strength. I know some are going to say, well yeah – it’s the same thing. But it’s not. I don’t have the same muscle capacity in my legs that I used to and it’s going to be a long haul getting it back. Fatigue is something I can push through, you always get your second wind and I have done some insanely long rides were fatigue is just part of the trip. After the 3 days of riding the one week, it took 3 or 4 days before I could feel my legs getting back to a normal feeling of strength. They were sore, and traversing stairs felt as if I had just done 4 flights instead of 1.

The we had to go and get the Wii Fit for father’s Day – and well that didn’t help the recovery effort either has I proceeded to play that for an hour every day for the first few days. Man I tell you it’s hard – you could seriously get a workout if you did this everyday for an hour – you would feel it afterwards. It’s fun too, especially the hula hoop – what a riot.

Anyway, I’m not sure what I was expecting ya know? that I would just be able to magically hop back on my bike and ride to fame and glory? Whay not? that’s pretty much what I did after my Collectomy was finally done – got yelled at by my docs too – but I got back into it fast. Of coaurse I was like 23 at the time, but that wouldn’t make any difference – there’s not that much difference between 23 and 35…..