Liver Life Walk Boston

I visited my doctor at Mass. General today.  I am a bit under the weather so I do not have much to say.
I am having some trouble with some medications so I am lacking my usual profound thoughts.
While there they gave me information on the American Liver foundation walkboston on 9/24/2011. They raise money for research and treatment of liver diseases.  I can not participate but said I would pass information along.  If you can sponsor the MGH team it would be greatly appreciated.

If you can help go to:  http://go.liverfoundation.org/site/TR/LiverLifeWalk2011/LiverLifeWalk?team_id=31070&pg=team&fr_id=2520     
and select Judith Bloom and follow the instructions.  Any amount is appreciated.
  

One Sunny Day on Route 1A

Yesterday, I was travelling home from Newburyport along route 1A.  The sun was shining and the temperature was just right.  As I drove through the quaint New England towns on journey home I was enjoying the sites, the warm breeze and a little Jimmy Buffet.  I was still slightly preoccupied.  I had caught a glimpse of something on the way up but could not stop at that time to investigate.  I decided to stop on my return trip when time allowed.  So, as I drove along, my attention was focused on finding that place again.
As I drove through town after town I began to think I had somehow missed it.  Just as the doubt was growing I spotted what looked like it in the distance.  As I got closer it came into focus.  A large Dairy Queen sign, but that was not what I desired.  A small sign below it led me to my objective; Orange Julius.  I had not enjoyed one in nearly 30 years.  I pulled in and parked the car.  I entered the store with great anticipation.  I ordered the large, of course.  Upon returning to the car I began to wonder if this was going to be as good as I remembered.  It seems many things from childhood are not quite as tasty as we recall.  I took a nice big drink and that creamy, orange concoction was even better than I remembered.  I got back on Route 1A and drove home with a big smile on my face, the warm breeze blowing and the Jimmy Buffet just a bit louder.
I used to look for those big moments in life to keep me going in this fight.  I have come to realize that those events, birthdays, holidays and other milestones, are going to happen and that I do not need to seek them out.  It is the small things that I experience every day that really inspire me.  Yesterday it was a tasty item from my childhood that made my day.  I look forward to what today may bring that will put a smile on my face and inspire me to carry on.
So, my advice to all is that while you are travelling on your route 1A, keep an eye out for your  "Orange Julius."     It may just make your day.

Keeping my eye on the prize

When I first heard the diagnosis, End Stage Liver Disease, I was devastated.  I was sick, confused and felt alone in the world.  I almost threw in the towel right then.  Thank goodness for my family.  They took care of me and got me well enough to face this hideous disease.
I began to get my physical health back.  It was slow going.  It seemed like every 2 steps forward, I took 1 back.  The symptoms hit me hard.  Anemia, Ascites, bleeding, and pain to mention a few.  Worst of all has to encephalopathy.  Some call it brain fog and I am have to agree that is an accurate description.  The medications slowly brought my symptoms under control and life was looking better.  However, every time I began to feel well.  Bang! Something would knock me  for a loop.  I have come to accept that my health is only going get worse, but I will not give up.
This is when I started working on mental health.  No I am not insane, but facing such an awful disease can get you down.  I see a therapist who has done as much to keep me going as any of the doctors.  He had me get my life in order.  First the practical things, finances, family and things like last wishes and A health care proxy.  Once all the clutter of daily was cleaned, he had me focus on my spirit and faith.  This led me down a path of renewal in face of death.  I am at peace with myself and ready to fight the good fight accepting whatever outcome awaits.  I function with the attitude to make good day count and enjoy life.  In hindsight I wish I had done this my whole life.
I hope this will help someone.  Please comment or make suggestions on this topic.  I am sure people would like to hear what others are doing to enjoy life.
Remember....   MAKE EVERY DAY COUNT!

Coping with the wait on an organ transplant wait list.

I have searched the internet and my area for a forum or group in order to discuss the many trials and tribulations of being on a waiting list.  I have spoken with my doctors and therapist about these issues and while their advise is relevant and valuable they are not experiencing this first hand.  My thought is to create a place where people can go for advise and information from people dealing with many of the same issues.  I am not a medical professional nor do I claim to be any type of expert on the subject.
I have been on the Liver transplant list since 11/10.  My wait could be substantially longer.  I have good days and bad days.  Have been in and out of the hospital.  This is a roller coaster ride for sure and I and I am sure others in this situation could use practical advise or just a place to vent if need be.
Please feel free to post questions, comments and offer advise.