End of February Update

Tracking my progress on my 2016 Resolutions. Here we are two months (60 days) in and I'm am still ahead of pace. 

For my 2016 bike miles, I've reached 337 miles in the first 60 days of 2016. That's 6.5 miles ahead of the pace needed to reach my goal.

For my reading goals, I am at 4.5 books. Here is my list so far:

1. Seabiscuit by Laura Hillenbrand

2. Heart by Dick Chaney

3. The Real McCoy by Hal McCoy

4. Mercy in the City by Kerry Weber

5. And God Said Play Ball by (in progress)

I also read The Yogi Book. I'm not counting this toward my goal as it is mostly a collection of his sayings with a brief explanation of them. However, I must admit, I did take my time in soaking in the wisdom of many of his statements. Many of them were just "oops" statements though and reminded me of some of our Conversations from Casa de McEntee.

In terms of my health and my situation of waiting, not much has changed. February was in some ways a difficult month. I found myself busier than usual, and honestly a bit frustrated and exhausted from this. I made two trips to Cleveland for various appointments. Those trips seem longer and longer each time. The good news is, I don't have to return until May. The bad news is, either my controller for my LVAD or some batteries continue to malfunction. I had gone six days without disconnect alerts, but they returned on Leap Day. This is disappointing as I had been asked to try using a shoulder bag instead of the lap belt I wore for a year and a half. I have not enjoyed the transition, but am getting used to it. Now that the disconnect alarms are returning, I fear I will have to go back to Cleveland to figure out the next step. Thus my 3-month vacation will be cut short.

I am continuing to volunteer and also to help my Dad with our genealogy. Although I enjoy these things, it requires lots of driving. So I suppose all of these good things together have caused me to become a bit frustrated at times. I have to remind myself, that I still have congestive heart failure and sometimes I need to give myself a day or two just to recharge my batteries. Fortunately I have been able to do that in the last couple of weeks.

A Year on "The List"

Today marks the first anniversary of my being added to "the list" of those awaiting a life-saving heart transplant.  I knew I was very likely to be listed. however there are some instances where a patient would not be a candidate for transplant for a variety of reasons.

This announcement from my doctors came in the midst of a very busy time in my life.  Amy and I had moved just a few weeks earlier. I had very recently finished my mission to get to view a game in every MLB team's home stadium.  I had turned 40-years-old less than two weeks earlier.   If there were an ideal time for this to happen so quickly, this was not it.

I still remember being very confused by how quickly things were happening.  I went from visiting two MLB ballparks, walking through Central Park in New York City, perusing the Baseball Hall of Fame in Cooperstown, visiting Niagara Falls to walking between all of my heart transplant evaluation appointments at Cleveland Clinic.  Every doctor who observed me seemed to be of the opinion I would be listed as a level 2 transplant patient, meaning I would be on the lowest priority list.  That changed when I had my final test which was a right heart catheterization.  This indicated that my heart was in later stages of heart failure.

It was decided that I would be admitted and they would try to arrange the right combination of medicines to best treat my heart.  The weekend showed that the medicines they tried either weren't working or I was unable to tolerate them.  I literally went from walking the length of Niagara Falls to being told not to get out of bed in a week's time.

At this point, it was absolutely clear I needed a transplant.  Whether I would be a candidate remained to be seen.  On September 9, 2014, that question was answered in the affirmative.  All the doctors and several independent reviewers looked at my case and agreed I should be added to the list.  I actually got to spend a couple of days as a 1A patient when they put in a balloon pump in advance of receiving my LVAD.

People continue to ask where I am on the list and when I will be transplanted.  The only thing I can say is I am listed at 1B and I will be transplanted when the time is right and the best heart for me and my body chemistry becomes available.  (That's a nicer way of saying "I'm waiting for the right person to die.")  I truly am content to wait for the right time and the right heart.  It may be another year, possibly even two or more before I get my new heart.  If that means I continue to live with some inconvenience, but am healthy enough to function as I have for most of this past year, sign me up.  If my condition deteriorates and my need is more imminent, I will be moved up the list.

Please do continue to pray for Amy and I, but also pray for all those awaiting a transplant. I am in good spirits.  Many who are waiting for a heart wait in despair.  Many who are waiting have had to deal with far more complications than I have.  I am thankful for how smoothly this has gone for me.  Sure, I've had a few bumps in the road, but nothing compared with some others I have met and interacted with in the past year.  Your support has meant the world to us!  I thank God for all of you!