End of May Update, Lots of excitement waiting in June.

May was off to a great start in terms of my goals for 2016, but it ended with whimper for a few reasons.  However, I am happy to say, I am still on pace to reach both of my goals.

In terms of my bike miles, I have reached 857 miles on the bike, which has me on pace to complete about 2064 miles by the end of the year.  What's the problem, you ask?  Well, June is going to be a very busy month and I had hoped to build in a bit more of a buffer as I will be out of town a lot and thus will not  likely have easy access to a bike.  That begins tonight as we make our way toward a mini vacation to Connecticut and New York where we will celebrate the wedding of Amy's cousin Caitlin...woohoo!  The second event is next weekend in Cleveland.  Only this time, I'm not (likely) going there to go to the Cleveland Clinic.  I'm going to support Team Ohio in the Transplant Games of America.  Many new friends that I have made through volunteering will be participating in a variety of events (Olympic style).  I will participate in the 5k walk that is open to everyone.  Until I am transplanted, I can't participate in other events, but I look forward to a great time cheering like crazy for my new friends and meeting many more new friends in the process!

As for my goal of reading 16 books in 2016, I have made significant progress in that department.  I had a lull in March and April due mainly to March Madness and fantasy baseball season kicking off.  May allowed me to get back to reading a lot again.  So here is my current reading list:

1. Seabiscuit - Laura Hillenbrand
2. Heart - Dick Cheney
3. The Real McCoy - Hal McCoy
4. Mercy in the City - Kerry Weber
5. And God Said Play Ball - Gary Graf
6. The Magic Stings of Frankie Presto - Mitch Albom
7. The Gift of Peace - Joseph Cardinal Bernardin
8. Bossy Pants - Tina Fey (almost finished)

I have always been a fan of Mitch Albom's books sinec Tuesdays with Morrie.  I wouldn't rate this as his best, but I liked it a lot as it has sort of a Forrest Gump feel to it, except in terms of music.  The gift of Peace is a book I have read before.  It holds a special place in my heart because the first time I read it was when I was flying home from Oklahoma at Thanksgiving shortly fter my mom was first diagnosed with pancreatic cancer.  I truly had no idea what the book was about when I picked it up off the shelf.  I just wanted to have something with a spiritual bent to it to read on my trip home.  It's one of many of those instances where God gives a glimpse to you that lets you know that you aren't alone in a difficult situation.  At any rate, I read it again to be reminded of the message as I have a number of friends who are battling cancer right now.  I mailed a copy to one of my friends, but I have another in case anyone would like to borrow/have it.  It's an easy read.

After that, I decided to go with something a little more light, so I asked Amy for a recommendation and have found myself laughing out loud at some of the stories in Tina Fey's book, bossy pants.  I should finish it on this trip.

I had my three-month follow up in May and all was good.  I am not due back until August now.  Unfortunately I had to get, yet another new controller.  The one I got in March was working fine, but shortly after I got it, I noticed one of the battery ports was loose.  I didn't have any real issues as a result, but they decided to change it out while I was in the office.

In recent days, I have had an issue with my driveline site.  At first, I was finding small amounts of dried blood on the gauze when I would do the dressing change.  That escalated yesterday when I discovered I had bled through the gauze.  I have remained in close contact with my LVAD team in Cleveland and they decided to have me checked for infection, event though they feel it is highly unlikely that I have one.  They are proceeding with an abundance of caution.  We will still be able to take our trip.  If needed, they can call in a prescription for me or direct me to a medical center near where I am.

Please keep my friends battling cancer in your prayers, and as always, please keep us in prayer as well as my future donor and his or her family!

End of April Update

Somehow it's May already.  The biggest win of the month was completing the Strides for Life 5k here in Dayton.  I finished dead last, but I finished.  Thanks to all who cheered and encouraged me.  Amy and I also got to participate in the Cincinnati Reds Findlay Market Opening Day Parade. As another Donate Life Month event, we got to spend time in Life Connection Green Chair Sit In at Cox Media (Channel 7, Dayton Daily News).  It was a fun month volunteering and helping promote organ and tissue donation in Ohio!

Here's my progress report on my new year's resolutions.  I hit a lull in the middle of the month that nearly knocked me off my pace for reaching 2016 miles.  I had a cold/allergies that knocked me for a bit of a loop and kept me off the bike for nearly a week.  I rallied to end the month with 675 total miles completed on the bike for the year.  My pace requires 667, so I'm actually a little ahead still.

In terms of reading, April also didn't see much movement, but I had a pretty good buffer there to reach 16 books.  I am about halfway through "The Magic Strings of Frankie Presto," by Mitch Albom.  This is the same book I had just started at the beginning of the month.  It's a fast read.  I just didn't pick it up much until near the end of the month.  Fantasy baseball gained much of my focus for the last half of March and the first half of April.  Hopefully I'll get back on a bit of a speedier pace from here on out.

My current list is as follows:
1. Seabiscuit - Laura Hillenbrand
2. Heart - Dick Chaney
3. The Real McCoy - Hal McCoy
4. Mercy in the City - Kerry Weber
5. And God Said Play Ball - Gary Graf
6. The Magic Strings of Frankie Presto - Mitch Albom (about halfway)


It wasn't my best month, but the fact that the year is more than 1/3 complete and I'm still talking about it is a win.

Healthwise, April was fine.  I felt a fair amount of fatigue, which was probably more related to my cold/allergy/sinus problem than anything else.  I must admit, I haven't done much walking since the Strides for Life 5k at the beginning of the month.  I will need to get back to it as I am signed up for two more walks this summer.

Spoiler alert, May will not hold the same good news from the health front.  I received a call today letting me know I was back in Atrial Fibrillation.  My home monitor tipped them off to this change.  I don't particularly feel any different, so lets hope I can continue to do my biking, as well as get out and walk more.  I've got to get ready for a couple those 5k's this summer!

That's about all I have to report for now.  As always, please keep us in prayer as well as my future donor and his or her family.

End of March Update

Tracking my progress on my 2016 Resolutions. We are now three months (91 days) in and I'm am still ahead of pace. Basically, we have reached the quarter pole, although there are two days beyond being exactly 1/4 of the way through the year.

For my 2016 bike miles, I've reached 524 miles in the first 91 days of 2016. That's roughly 20 miles ahead of the pace needed to reach my goal.

For my reading goals, I am at 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 Gary Graf

6. The Magic Strings of Frankie Presto by Mitch Albom (barely started)

I didn't do a ton of reading in March as it is March Madness and Fantasy Baseball prep season. Once all of that dies down in a couple of week, I will have more time to devote to reading again.

My health is still in pretty decent shape. Unfortunately, I did have to go back to Cleveland to get my controller changed this month. My new one has had a couple of disconnect alarms, but not excessive as they had been before. I am concerned that one battery port on the controller appears to be loose. This was a problem last year too. Since I am already on my fourth controller, I am really hopeful that this will not require a change, especially so soon after the last one. I am still not scheduled back to Cleveland until May 10, so I am hopeful that that will remain. There is a possibility that if I do require another controller change, it could be done at a hospital in a Cincinnati or Columbus, which would save me several hours of driving.

With April beginning, I am very excited because it is Donate Life month. God willing, I will be able to participate in several volunteer events with LifeCenter in Cincinnati and NKY and Life Connection in Dayton. Please take the opportunity to register as an organ donor and encourage others to do so.

Amy and I are so excited to be participating in the LifeCenter float during the Reds Opening Day Parade. If you plan to be there, look for me on the float and Amy walking nearby! Before that, we have formed Team Patulence to take part in the Strides for Life 5k in Dayton. This is being put on by Life Connection in Dayton. If you would like to join us, walk up registrations will be taken on Saturday, April 2.

Thank you for your continued prayers. As always, please pray for my future donor and his or her family!

A day to reflect on March 10, 2006

Ten years ago, I received a call to get to the hospital right away, that my mom had stopped breathing. We knew she was dying. She had been placed in the hospice care at the hospital.

I remember back to my years growing up and my mom having several various heart ailments (I come by them honestly). She always rebounded from them and kept moving forward. 

I remember her having an episode in the summer of 2002. I had just earned a master's degree from the Univeristy of Dayton and was preparing to move to Oklahoma to start a new job at St. Gregory's  University. My mom sensed my concern about leaving with her being ill and she assured me, "don't worry, I'm not going to die on you." She recovered, but then two months later, she was diagnosed with pancreatic cancer and had surgery to remove the tumor. It was successful, but it took many months and a lot of tough love to get her back to being herself.

Pancreatic cancer is a very deadly form of cancer. Survival rates are low and typically people don't live more than a year from first diagnosis. I always thanked God for the extra time. Not only did we get a year. We got 3 1/2 years from her initial diagnosis.

So there we were, at her bedside on March 10, 2006, and she was gone. One of my first thoughts was that it was my grandma's birthday. Yes, my mom's mom turned 96 on the day she lost her eldest child. It was the second child she would have to bury. My uncle died in 1988. I decided to visit her, but really didn't know what to say. "Happy birthday" didn't seem to fit.

I like to think I got much of my personality from my mom. She was always very easy going and pleasant to be around. Unfortunately, I also got many of her heart issues, and then some. Still, I am very thankful to have had 31 years to learn and grow from her.

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.

End of January update.

Last year, I sort of shied away from making resolutions because of the fact I was waiting for a heart transplant.  It's not as if I intended to sit on my butt all day and wait for the call.  I didn't do that (most of the time anyway).  I have tried to remain determined to live my life to the fullest extent I am able given my limitations.  My wife Amy is good ally to keep gently (mostly) nudging me forward.

So, since 2015 came and went without a new heart for me, I decided there really is no reason to avoid making plans or setting goals.  Lord knows, I've not come through on numerous resolutions in the past.  However, I didn't want to set vague goals, or cliche goals.  I wanted them to be concrete.  If I've learned anything from my jobs over the years, when you go to your evaluation, make sure the goals you set are measurable.

So, I set two concrete, measurable goals for the year 2016.  First, I intend to pedal 2016 miles on a bike.  Most of these miles will be on our recumbent bike at home, but any bike will do.  Second, I will read 16 books in this calendar year.  I mentioned these goals in my last post, so consider this a monthly report on how I am doing.

Through January 1, I had completed 169 miles on the bike which puts me on pace for about 1995 miles.  Slightly off the pace, but not too bad.  On the book side, I have completed Seabiscuit, Heart and am currently close to finishing The Real McCoy, so I am fairly well ahead of the pace on that one.  It helps that with the recumbent bike, I am easily able to read while I ride.  Killing two birds with one stone is nice.

In addition to these goals, I am keeping myself busy in other ways.  My Dad asked me to help him with his genealogy project and so I have been going down to his house weekly to work with him for a few hours on that.  This has involved scanning and labeling old family photos, some that are well over a hundred years old.  As he said, "I'll be dead and you kids won't know who in the hell these people are."  The other big project is tracing our family's lineage to St. Marianne Cope.  There is some connection between our family and hers, but thus far, we have been unable to find it.  It appears it resides in the 1600's or there abouts.

I have also been continuing to volunteer with local organ and tissue donation centers.  Currently, I have done office work and speaking to people at various events at a booth.  I hope to perhaps add speaking to school groups down the road.

Amy and her sister Emily are entering several 5k and 10k races in the coming year.  Some of those will be for organ transplant awareness.  I intend to participate in some of those in particular.  Since i have been out of Atrial Fibrillation, I feel as though I am certainly capable of walking some of these.

As always, thank you for all your prayer and support.  Please continue your prayers for us and my future donor.

When did we get old?

The year is off to an odd start to say the least.  I learned several years ago that life is fragile and precious as my heart disease began the snowball's roll down the hill, gathering size and momentum as it went.  Although I was sick, I remained (and still do remain) upbeat about my prognosis.  I have been blessed to have exceptional doctors taking care of me.  I'm even more blessed to have so many family members, friends, acquaintances and strangers praying for me daily. Without a hint of a doubt, I would not be here without them.

One of my college friends had a heart attack on January 1 after taking his dogs to the park.  He died two days later.  Earlier this week a high school friend was diagnosed with cancer in his kidney.  Further tests showed it had spread beyond there, but had not made it into his bones or his brain.  His prognosis is not good, but he is a surgery candidate, and we will hope and pray like crazy that medicine and technology will catch up to his disease.

I recently read a book called "Heart" written by former Vice President Dick Cheney and his cardiologist Jonathan Reiner.  One of the points Cheney reiterates throughout the book is how lucky he is that new technology became available for him at just the right time to keep him alive.  In this book, Cheney chronicles his 35 year battle with heart disease that led him through five heart attacks to receiving an ICD/pacemaker to receiving and LVAD just before he would likely have died, and ultimately to receiving a heart transplant.  It was a fascinating read as I could identify with so much of his journey.  I had a heart attack (although mine was a result of hereditary factors, not blockage).  I had an ICD/pacemaker implanted.  I have an LVAD and I'm awaiting a heart transplant.

Reading this book is also part of one half of my resolutions for the new year.  I intend to read at least 16 books in 2016.  I tend to read in spurts, but with this goal, I hope to become more consistent.  I received several great books for Christmas, so I have a few to get me started, but if any of you have recommendations, please pass them along!

1. Seabiscuit - Laura Hillenbrand
2. Heart - Dick Cheney & Dr. Jonathan Reiner
3. The Real McCoy - Hal McCoy (I'm working on this one now.)

Next up will probably be The Magic Strings of Frankie Presto - Mitch Albom.  I always enjoy his books.

I also resolved to help keep myself in better physical shape for transplant by biking 2,016 miles on our recumbent bike in 2016.  That breaks down to an average of 5.5 miles per day.  I did not get off to a very good start to the year and it took me until today to actually reach the pace I needed to reach the goal.  It took many days of riding 10-12 miles in a day (roughly an hour) to make up for days I didn't get on the bike at all.

This has me feeling much better physically.  I am back to feeling about the way I did at this time last year before I began the nearly year-long battle with atrial fibrillation.  The Tikosyn prescription that I was put on in November has been effective in keeping me out of A Fib thus far.  It is a pricey medicine, but it is helping me to keep my strength and energy up for the time at which I am called for a new heart.

Please continue your prayers for Amy and I as we continue to await "the call."  Please also pray for my future donor and his or her family who will have a terrible tragedy to deal with at that time.  And also please add the family of my friend Tom who passed away and for my friend Kevin and his family as they prepare to battle cancer.