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!

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.

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!

Seeing the realities of a heart transplant

I often find myself distanced from the reality of what lies ahead for me.  It has been almost a year since I was added to "the list" of those awaiting a life-saving heart transplant.  As much as we all like to say we want to live each day to the fullest, we get caught up in the minutiae of life.  I do too.  Even now.  

Yesterday was not one of those days.

I drove to Cleveland for a series of appointments.  Aside from the regular checkup, I was there to determine the course of action for my atrial fibrillation.  After about four months in it, I was cardioverted in July.  Two and a half weeks later, I received a call from my electrophysiologist's office letting me know that I had once again gone in to A Fib.  How did they know?  Magic.  Well, sort of.  Because I have an ICD/pacemaker implanted, the device reads what my heart is doing.  On my nightstand, I have a machine that reads it and sends periodic updates to my doctor electronically.  They received an alert over that weekend that I had gone back into A Fib.  Magic indeed.  Because I was not able to stay out of it on my own, the next likely course of action is to put me on a medication that will help keep my heart rhythm normal for a longer period of time.  Stay tuned for when that will occur.  It is not urgent, so it will be at my convenience.

But that is not why the reality of what lies ahead hit me.  I had a long time between appointments and after I met with my cardiologist and LVAD team, they asked if I would be willing to speak with a patient who was considering the possibility of receiving an LVAD.  I had been asked to do this once before and, like then, I was happy to do so.  Having an LVAD is cumbersome, but it need not be crippling.  I have tried to stay as active as possible and I think I've been very succeful in keeping the limitations of having the LVAD to a minimum.  I know there are many people who hate having to wear their heart pump.  I look at it as a great gift.

After explaining my experience to this man, his doctor came in.  It was the same doctor who told me I needed an LVAD last September.  He did not have the same news for this man.  He told him he didn't want him to have a pump, but that he was going to need to go straight to transplant.  This means he will not leave the hospital without a donor heart.  I felt a little awkward speaking to him about this and then telling him, "ok, now disregard all that."  I continued to talk with him for a few minutes and as another team of doctors came in to talk to him, I left him with the assurance that I would be praying for him to receive a donor heart quickly.  

After a couple of more appointments, I decided to visit the 5th floor at Cleveland Clinic to do some exercising in the Cardiac Rehab facility.  I saw several "old friends" from my stay there last year.  My social worker, one of my LVAD nurses and one of the floor nurses who was so great when I was recovering from my surgery all came by.  I also met a man who was the first patient at Cleveland Clinic to receive a full artificial heart.  He seemed to be doing very well considering his surgery had been less than a week prior.  He is another man who will not be able to leave the hospital without a new heart. 

I know many people wonder how long I will have to wait for my new heart, but I know there are many people who are in much more dire need of a new one than I am.  I am very happy, relatively healthy and have been given the blessing of time with my LVAD.  I know my time will come, but my prayer will always be for those who need it most receive their special gift of extra life.

Thank you as always for your support and prayers

The 5k that wasn't, then was

Amy and I traveled to the Cleveland area to participate in the Lifebanc Gift of Life 5k Run and Walk on August 8, 2015.  So we thought we were participating in a 5k.  We arrived early to check in and get our t-shirts and see what else was happening.  We had a chance to talk with different sponsors and exhibitors while we awaited the Legacy Garden ceremony.  Included in this was a chance to talk with the folks at the World Transplant Games table.  This event will be held in Cleveland next year.  Perhaps I'll be a participant.  After all, they do have a trivia competition and a poker competition. 

The Legacy Garden Ceremony allowed me to have a poster in the garden for others to see.  As it turns out, most of the others were people who had either received a transplant or who had a loved one who was an organ donor.  There were a handful of family members of people who died waiting.  However, I was the only one who was represented as currently awaiting an organ transplant.  I was very humbled by this.  I know there are many more out there who are in need.  It made me realize how incredibly fortunate I am to be able to function reasonably well while I wait.

One of the speakers recounted the story of her son being both a recipient and a donor.  He received a transplant as a 13-year-old, but then died tragically in an accident shortly before his college graduation.  His organs were then donated to others in need of a transplant.  Talk about paying it forward!

At the end of the ceremony, there was a balloon launch of all the participants in the Legacy Garden.

Finally, it was time for the race to begin.  The runners went first and had a different course than the walkers.  We didn't think much of it and we were on our way.  After having a bit of trouble getting my phone and playlist to cooperate, we were finally moving and I needed only one short break to catch my breath.

After about a mile, we realized we were coming back to the starting point of the race.  Everyone else seemed to be wandering around to get food and other items off the exhibitor's tables.  Amy and I both asked each other, "Was that it?"  Apparently it was.  We decided we weren't finished.  I told everyone I was going to complete a 5k and I intended to do so.  So we walked the grounds some more and ended up walking well over 5k for the morning.  So it became sort of a DIY 5k, but we did it.  Of course we had to finish with a photo in the chair at the course, which is symbolic that no chair be left empty.  

Please continue to keep Amy and I in your prayers.  Your support has been amazing!

Help me build my playlist for the 5k on Saturday

The day is almost here where I will attempt to complete the Lifebanc Gift of Life Walk & Run on Saturday, August 8, 2015.  Of course, I will be walking it.

I am looking for song suggestions for my soundtrack for this event.  I'm thinking songs that have a walking theme to them, but I'm open to suggestions of just fun songs that people think would go well.

Please feel free to post any ideas you have on my blog page, Facebook or Twitter.

Please also pray that I manage to complete this.

I'm doing a 5k on August 8!

When it comes to races, my wife Amy likes to say she's "not fast, but not last."  I may put that to the test next weekend at the 2015 LifeBanc Gift of Life Walk & Run.  I have decided that I am going to attempt to participate in this event instead of just watching as I did in a similar event in Columbus that Amy ran a few weeks back.  Make no mistake, we will be walking this one (insert my usual disclaimer that I will indeed run if there is a snake or a bear in the vicinity).

Since I was brought out of atrial fibrillation a couple of weeks ago, I was eager to get back into a better exercise routine than I was in during the four months or so that I was waiting for my heart rhythm to be brought back to normal.  Unfortunately, although there was a noticeable increase in my stamina and ability to comfortably exercise, it was a far cry from where I was in January and February.

I have been able to increase my speed and duration quite a bit on the exercise recumbent bike.  On the lowest resistance, I was able to do five miles in a little over a half hour.  My last crack at the bike saw me hit 11 miles in just over an hour.

Amy and I have been walking along part of the bike trail that runs through Dayton.  Unfortunately, I did not notice a great deal of difference in the distance I could go without taking breaks along the way.  Although I did feel a bit better.  Today, I went to the exercise room at our apartment complex to see where I was at on the treadmill.  Unfortunately, I found it startling how much slower I was able to handle  and how often I had to take a break as opposed to back in February.  I managed to do about half of a 5k, but my speed was down to about 2.6 mph where I had gotten to an average of about 3.3 mph.

I will continue to "train" in advance of this 5k and hope to lessen the number of breaks I need to take and increase my duration.  I'd like to at least get one actual 5k in prior to the event.  I really don't know what the course will be like, but I am hopeful for a flat course.

Although this event is a fundraiser for LifeBanc in Cleveland (an organization that promotes organ donation in the Cleveland area) if you would like to make a donation to my HelpHOPELive campaign, it would be appreciated as well.