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.

What a whirlwind the last month has been.  I could have posted much more, but it seems there hasn't been much free time available at all.

Amy and I were rather abruptly nudged to consider moving in August when we discovered our rental company intended to raise our rent by about 25% in one year.  Although they came back a few days later with an offer of a much smaller increase, we had already begun looking at other options.  We found a place we liked in an actual neighborhood and in a duplex, rather than an apartment complex.  Our landlord is a friend of ours and my cousin also lives nearby, so although neither of us like to move, we decided it was a good situation to go to, especially since there was no guarantee from our previous rental company that the rate wouldn't jump next year.

So, the move has been the major factor in my silent blog.  We moved in the first weekend of October and are still working to get settled.  Many boxes still sit unpacked in our parlor (yes, we have a parlor...it's an old house), the basement and in one of the bedrooms - the one that has been designated as my baseball card room.  The rest of the house is mostly settled, so we are already miles ahead of where we were for our previous move last summer.

Amy and I also have been part of a team for a Christian Awakening retreat for Holy Cross High School seniors.  We have been meeting for several weeks and that planning has led us to the retreat this coming weekend, sp please offer up your prayers for us, especially the seniors, that God guide us all and that we all come away with our faith awakened anew.

As for my heart transplant goes, I am waiting still.  I have been feeling well and my checkups have been positive.  My most recent was last week.  During my visit, I was again asked to speak to a potential LVAD recipient about my experience with the heart pump.  Although the first time I was asked to do this, I felt a little awkward meeting someone for the first time and discussing this possibility, I have grown to actually look forward to being able to do this.  It has become a ministry of sorts that I can impart my "wisdom" on these people who are facing the same uncertain future as I was just over a year ago.

The other benefit of this is that I come away with the realization that my situation is very much under control and I am in good hands.  It's not as if I don't look forward to the time I receive my new heart, but I see so many people who have a greater need than I currently have and it makes me count my blessings.

One other note to add.  Last week, I took part in a fundraiser for Team Ohio, which is an organization of people who have been affected by organ transplants.  They also support sending recipients to the Transplant Games of America to compete in various athletic events.  This group is also connected to Life Connection of Ohio, which is a donor advocacy group for people in the Toledo and Dayton areas.  There are other group who do similar work in other parts of the state.

This was a great time for me to connect with other people who have faced similar situations as I


have.  There were several organ recipients, including a heart recipient.  The family of a woman who passed away after her second heart transplant, a bone marrow donor and a heart recipient who recently celebrated 17 years with his new heart.

As always, please continue to pray for Amy and me, but also for my future donor, those in dire need of a transplant, and the families of those who will bring hope to others in the midst of their own grief.

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

Visiting some old friends

As I have mentioned before, having to leave my position in the vocations office of Glenmary Home Missioners as a result of having my LVAD implanted while I await a heart transplant was one of the many very difficult challenges I've had to face since September 2014.  I have managed to stay in touch with many of my former co-workers there and still enjoy seeing them from time to time.  

I was particularly touched when I was asked to join all the other people from Glenmary to celebrate the several August birthdays.  In the past, we had always gotten together to bring in lunch for the whole office to celebrate all of us who have a birthday in August.  So, in spit of not working there for nearly a year, I joined them to celebrate.  It's nice to be remembered.

This week, I also got to make a connection with some professional colleagues from other religious orders who I often collaborated with in my ministry as I tagged along with my wife at the JS Paluch National Vocations Awareness Seminar.  Amy was there representing the National Catholic Young Adult Ministry Association.  I had attended a couple of times as a member of the leadership council for NCYAMA.  So, it was really great to see many other vocation ministers and national leaders that I had worked with or had some interaction with again.  Ironically, the theme of the seminar was collaboration, so it was great to be welcomed in and to sit in on a number of the sessions. The Paluch family has been amazingly gracious to us over the years.

I am also humbled by how many of these people are already praying for me daily.  Further, now there are many more to add to that list.  I can't tell you how humbling it is to meet someone for the first time and know that they've been praying for you.

I am also thankful for the ability to travel to Chicago for this event.  I have to clear all travel with my LVAD team.  When I travel, they track down all the information I need from where the closest LVAD friendly hospital is, as well as airport information.  They contact those places as well to inform them that one of their patients will be in the area.  I guess it's true, I'm kind of a big deal.

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.

All-Star Fever

The 2015 MLB All-Star Game was held in Cincinnati last week.  Although I would have loved to participate in all of the festivities, the cost of doing so was prohibitive.  I also had a few other things going on that were, frankly more important.  Fortunately, I was able to find some very inexpensive tickets to the All-Star Futures Game/Legends and Celebrity Softball Game and was able to attend with Amy and my brother Tom.  We also met some friends attending the games.  It was a great deal of fun, but I was struggling getting to and from the stadium due to my heart condition - particularly because I was still in Atrial Fibrillation at the time.

On Monday, the day of the Home Run Derby, Amy and I drove to Cleveland in advance of my appointment to be cardioverted.  Thankfully, I was able to watch the Home Run Derby there  and got to experience the excitement of watching my favorite Red, Todd Frazier win the Derby.  The next morning, we went to Cleveland Clinic for my cardioversion and hit another obstacle.  My electrophysiologist had wanted me to be therapeutic on my Coumadin for 8 consecutive weeks because of my history of strokes.  I had made it...all the way up until the day I was to be cardioverted, of course.  A wonderful nurse saw how disappointed I was and talked with the doctor about options that would allow them to still do the cardioversion that day.  It included get a TEE (trans esophageal echocardiogram) to be certain there were no clots in the heart, which he approved.  Then, my nurse coordinated all the doctors and nurses who needed to be together for the procedures (and there were quite a few), which was no easy task.  One group was running late and that caused another doctor to have to bail out because he was due in another surgery room.  She found a replacement and about five hours after I was supposed to have my cardioversion done, I finally did.  We did make it home in time to watch most of the actual All-Star Game.  Unfortunetely our NL team lost again.

The weekend after my cardioversion, we had planned to go to Washington DC for a mini vacation in which we would stay with friends, visit some of the sites and of course, hopefully make it to a Nationals game.  Because I was not therapeutic on Coumadin, we were not able to go.  They gave me Lovenox to inject to keep me safe from stroke until I became therapeutic again.  This caused me to get some heavy bruising at the injectin site and also affected my drive line site a bit, although those are beginning to clear up now that I am therapeutic once again.  

Instead, Amy and I planned a staycation instead.  One of the most fun things we did was take a tour of the different mustache designs from the All-Star Game al around Downtown Cincinnati and Northern Kentucky.  My Fitbit, which I use to track my activity, showed that I walked about 6 miles that day.  Although I'm not in as good of shape as I was back in early Spring, I fared much better than I would have if I were still in Atrial Fibrillation.  Being able to complete that and still have enough energy to go bowling that night made me realize what a difference this made.

As I try to get back to the shape I was in a few months ago, Amy and I are planning to participate in the Gift of Life Walk & Run sponsored by LifeBanc in Cleveland.  Amy did a 5k run in Columbus a couple of weeks ago, while I watched.  I will be participating in this as a walker in the 5k...unless I see a snake or a bear, in which case, I will be running.

I found my old blog posts!

Apparently my blog was being kept on my other gmail address.  Now I use this one primarily and thus will have easier access to it.  I have rescued all my posts, copied and pasted them here along with the original dates.  If you're up for a trip down memory lane, this will be good for a few laughs if nothing else.

Get Busy Living - from 2/10/2015

I had a series of appointments at the Cleveland Clinic yesterday. The doctors continue to be happy with my progress and my numbers look good. I even had two of my medicines eliminated and one vitamin supplement added. They were pleased with my progress in cardiac rehab and more pleased that I am continuing to get regular exercise. They also seem pleased (and maybe a bit surprised) at how active I am. I watched The movie Shawshank Redemption today. I've seen it many times and the line that always jumps out at me is, "You either get busy living or you get busy dying."  I have been given a new lease on life and intend to do a lot of living. With the LVAD I have more of an ability to continue to get busy living.

February Heart Health Month - from 2/6/2015

It's February and that means it's Heart Health month. My wife, Amy has put together a fundraiser for the American Heart Association using Jamberry Nail Wraps. If you are interested in participating, send me a message on Facebook and I'll send you an invite.

The new year is not so new anymore. About a week into January, I completed my cardiac rehab phase II. That left me to decide how to continue. I could go into phase III, but decided to take advantage of the exercise equipment we have at our apartment complex, rather than paying to be supervised while I exercise. The difficulty with this is the having the will power to go and do this when no one is watching. Thus far, I've succeeded in going every Monday, Wednesday and Friday. I've put in between an hour and an hour and a half each time. If you follow me on Instagram, Twitter or Facebook, you've seen me post my workout summarys.  Seems tedious, bit it helps me stay accountable for doing it. It's a struggle as I change my mind constantly about how much I will do. The mind is a powerful thing. Use it to do more. I can always talk myself into doing a little more. I set goals and once I reach them, sometimes I can convince myself to do more.

I'm continuing my low sodium diet, although I find myself "cheating" more than I should on that. My LVAD makes it so I am not in as bad of shape if I do cheat a little. Definitely not an excuse, but it's a struggle to keep to it.  The weight I lost after my surgery has crept back up. I guess one drawback to my recovery is that my appetite seems to be much improved. I like to think some of the weight added is muscle and no doubt it is, given the atrophy I experienced being in the hospital for a month. However, I can tell it's not all that.

I again want to thank everyone for the prayers you continue to say on my behalf. Please keep them coming. We never know when the call will come. I pray that I am ready in every possible way when it does come.

Pre Christmas visit to Cleveland Clinic - from 12/24/2014

First of all, Merry Christmas to everyone. I knew time was flying, and I was right. How is it possibly here already? 

We have been busy gathering and wrapping presents. We were also able to get our Christmas cards in the mail...in shifts.  Sorry again for the length of our letter, but a lot happened and we had to work in all our baseball references for the "theme." If you usually get one and didn't this year, you either have a new address and we need to update, or we have misplaced your address. Please let us know if you would be added or updated.

In the midst of all our last minute preparations, we had to drive to Cleveland on Moday for a series of appointments on Tuesday before driving back last night. This was a particularly important visit as my appointments included a right heart catheterization. If you've been following along, you may remember that is the test that didn't look too good and got me admitted to the hospital in September, where I stayed for a month. This time, my pressures and other numbers all looked great according to my cardiologist. It was sort of funny as I was being prepped for the procedure, the doctors asked me what I was doing for Christmas. My response was, "that depends on you." Fortunately, because I "passed" my Christmas will be spent with family. 

One other tid bits and good news came from this visit. I have been cleared to shower again. So later today, I will take my first shower since just after Labor Day.  Throughout our walking the Cleveland Clinic, we kept seeing Christmas trees decorated with Cleveland Clinic ornaments. Mean ole Amy wouldn't let me steal one to bring to our Christmas tree. :(  Since my appointments were finished by about 2:00, we decided there was enough time to swing by the Christmas Story house. As you might imagine, it was pretty packed two days before Christmas. 

I am attaching a couple of photos from our visit to the Christmas Story House and surrounding neighborhood. I hope you enjoy. Merry Christmas to all of you and may the year ahead bring many blessings and much joy.

Here come the holidays...whoa! - from 12/12/2014

The 2014 McEntree

Hi again everyone. Once again I have to apologize for such a great length between blog posts. I did manage to get it in just under a month, so there's that, I guess.  Much has happened in the last 29 days. I was cleared to drive. This has been very important for many reasons. For one, I am able to take myself to cardiac rehab every day. I also am able to be much more independent. It helps Amy that she doesn't have to drive me on all of my errands. Mostly, though, it is important for my psyche. I must admit feeling a touch of cabin fever when I was unable to go out during the day.

A very sad day happened since my last post. My tenure at Glenmary Home Missioners as Associate Vocation Director officially came to a close. My short term disability expired and I put in my application for long term disability. Unfortunately, going on LTD means I must be officially terminated.  This is very difficult for many reasons. 

Glenmary provided a wonderful atmosphere to work in and I will miss all the road trips, visits with young men discerning a religious vocation and seeing Glenmary's missions in action.  Most of all, though, I will miss the great people I was privileged to work with, both in the vocation department and in the office.  I definitely will miss the card playing at break time. I pray that Glenmary finds the right person to help nurture many more vocations to Glenmary priesthood and brotherhood. But obviously, my focus is getting as well prepared and strong for transplant as I possibly can.

Cardiac rehab is consuming more and more of my Monday-Wednesday-Friday routine. At first, I thought I'd lose an hour or so a day, but now, I am excercising nearly that long, plus getting set up, cooled down and having blood pressure checks along the way. It pretty much consumes an entire morning or afternoon, depending on when I go.

I have also met several of the other rehabbers. Two of them have already had heart transplants, so it is great to be able to talk to them. The drawback is that I have to get there at 8:00 in order to catch them. That doesn't always happen. Jerry has been a very big help. He had an LVAD prior to his transplant so he knows my situation better than most folks. I am finding I have my good days and bad days at cardiac rehab, but I can also see a progression of having more energy and strength. I am told, being physically strong and mentally strong are very big factors in having the ability to approach and recover from transplant surgery.

So, not the holidays are quickly approaching. We are still getting things in order for that. I thought I would have tones of time to get ready this year. In some ways I have been able to do more to prepare for the season, but I'm still a bit overwhelmed by all there is to do. Hopefully Christmas cards will go out by early next week. It will include our annual Christmas letter, which we try to be creative with so we don't bore people.

Anyway, that's it for this update. Once again, I will try to be more active about posting in the coming weeks.

My friend Jodi and I at Glenmary