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.