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.