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

Heart Transplant update - from 11/13/2014

Hi again, everyone. I guess the fact that my updates are becoming less frequent should tell you that things are getting better in my recovery from LVAD surgery. I'm becoming more active. Aside from some of the scar tissue and occasional achy legs, pain is not really part of the equation at this point. My energy is returning and I am becoming more active. I still move slowly, but if you ask anyone I ever played sports with, I never did move fast. At any rate, I don't feel fatigued like I did prior to the surgery. 

I am still not cleared by doctors to drive, but I hope to get clearance when I go to my cardiologist appointment in Cleveland next week. If any of you have ever had driving restrictions, I'm sure you know that there is a certain loss of independence when you are unable to drive.  In the mean time, Amy has been taking me where I need/want to go. Most days while she is at work are passed by doing dishes, doing paperwork for insurance companies and government offices, and other odd jobs. A few times a week, I walk to the clubhouse for our apartment complex to use the exercise equipment. Much like when I was attending cardiac rehab in the hospital, I use the recumbent bike and/or the treadmill. When I was in the hospital, I think the longest distances I made were a mile on the bike and 1/4 mile walking on the treadmill. Recently, I have gotten up to about 3 miles on the bike and a mile on the treadmill.  Although my speed has increased a bit, I won't be running anytime soon...unless a bear or snake is chasing me. Yesterday, I tried the elliptical machine. That didn't work out so well. I lasted just a few minutes and only made it 1/10 of a mile. It was definitely more vigorous than the treadmill or the bike. Maybe later on, I will try again. For now, it's clear that I'm not ready for that.

A lot of people have asked me when I will likely receive a donor heart. As you might imagine, it is a bit unpredictable given that a heart cannot come from a live donor. I am prepared to wait a couple of years or possibly longer. There are well over 100 people on the transplant list at Cleveland Clinic. On average, they do about 45 heart transplants a year. A little math suggests that I will be waiting up to two years or more. Because of the length of time and the uncertainty of the timing of receiving a transplant, as well as the travel and lifting restrictions that I have because of the LVAD device I have implanted, I will not be able to return to work until after I receive the transplant. As a result, my papplications for disability are in process.

A few things to keep in mind when/if you see me, please remember that getting sick for me is not a good thing. If I have the flu or some other illness that will weaken me, I cannot have the transplant surgery. I have received a flu shot, pneumonia shot and other vaccinations to avoid anything serious. However, as you know, those immunization can't guard against everything. If you are sick, please don't share your germs with me. If you will be around me a lot, please consider getting a flu shot yourself. It's not just good for me, it's good for you. Wow, that sounded like a really bad PSA.

I have a few things in mind to keep me occupied during my time off such as doing some writing, volunteering and, of course, I will  attend to my sports card hobby, probably selling off some of it so that our spare bedroom isn't overcome by them. If anyone has other suggestions for productive things to help keep me busy, I welcome the ideas.

Thanks again for the prayers for both myself and Amy, who has been a gem as a caretaker.

Been a while since an update - from 10/16/2014

I realize it has been a while since I posted an update. The biggest news is that I have been released to go home at long last. Amy and I made it home on Tuesday evening. It truly is great to sleep in my own bed again. It's much more comfortable than a hospital bed.

I continue to heal from the surgery. The pain is continuing to subside and the energy is returning slowly, but surely. Yesterday, we went to the grocery store and I didn't have to use one of their motorized carts. I don't have too much trouble doing these things, but I find I'm very tired afterwards, so I guess that's my indication that there is still a long way to go.

As I continue to heal, I am noticing a very important thing: I am not having any of the heart failure symptoms I had been having. Among those was a dry cough, shortness of breath and tightness in my abdomen from the water retention. 

My weight loss has continued since my hospitalization. Prior to that, I was holding fairly steady in the mid-190's which was down quite a bit from my highest weight, which was in the neighborhood of 235 pounds. Once they got the fluid I was retaining from the heart failure and then the fluid they had to give me to make sure my blood pressure stayed at an appropriate level for surgery, I have lost even more weight. I was down to the upper 170's. Of course, some of this weight loss is also likely muscle mass as a result of spending a month in the hospital. So I expect to add some weight as my strength come back with more activity and exercises I am doing.  The good news is, although I continue on my low sodium diet, I have not had to take any Lasix (water pill) since my discharge from the hospital. That's a great sign that the pump is doing its job of sending blood throughout my body at a better rate than it has in quite a while. So long as my weight climbs in small increments, things are good. If it jumps a couple of pounds in a day, that could be cause for concern as it may be an indication of water retention. 

I still look forward to when the pain is gone and all the energy is back, but it can already tell that I am in better shape than I was prior to the surgery.

My Rock - from 10/10/2014

Amy probably won't like this post, but I truly have to acknowledge that she has been my rock through this whole process of dealing with my heart issues. When you take the marriage vows, it's hard to fathom that the sickness and health card will be played so early in a marriage. Granted, my health problems preceded our marriage and she knew that going in, but we certainly weren't expecting this kind of escalation, at least not in the first four years we were married.

Instead of making me feel like a burden, Amy has gone out of her way over and over to address my needs over her own. She has been juggling her work responsibilities (fortunately, she is able to do much of her work remotely), my care (waiting on me hand and foot at times), truly working as an advocate for my health care when things haven't been quite right, and learning how to be my caretaker now that we have left the hospital. There is a great deal more involved in being my caretaker including daily dressing changes on the drive line for my new LVAD device for as long as I have the device. She has even reminded me to keep my manners when requesting help by reminding me that a "please" can go a long way.  I also call Amy my "external memory." She has a much better memory than I do and thank God for that. My situation is complicated and my memory is not at all the best. Probably not even average. From reminders to take medicine or being able to answer doctor's questions easily, she is always there to help me out.  I truly shudder to think of what kind of shape I would be in if it weren't for Amy.

To say I found one of the good ones would be more than an understatement. God brought us together for many reasons. Some are still unknown to us, but I think of all the reasons why we wouldn't be together and wonder how persistent God must be to actually have brought us together in marriage.  Every day different reasons for our union become known and, clearly, this is one of them. I seriously love watching God's plan unfold before me and am ever grateful for the blessing Amy has been for me. Not just in taking care of me, but in keeping me laughing in a time I could easily be crying.

I had a chance to watch my father be a caretaker for my mother in the final years of her life. I learned that it is NOT an easy job. As much as my siblings and I tried to do our part, the biggest burden was on him. Now that Amy is in the role of being the caretaker for me, I see, even a little more closely, how difficult it is to be a caretaker. I am so appreciative that most of the prayer intentions that come my way are also sent Amy's way. Please do continue to hold Amy in your prayers as much, if not more than me. She is right there with me in my recovery, but she also has to continue to deal with life's other responsibilities. Watching how effortless she makes this seem, boggles my mind.

All of this is not new. Amy has been caring for me through various ailments that have led me to this point. This includes last summer, when I had to spend an extra day or two in the hospital so they could drain fluid off of me. This necessitated a visit from the nutritionist who finally helped me truly understand the need for a low sodium diet. Amy has helped me keep to that diet by radically restructuring the way we eat. This includes her finding recipes that fit the plan and she even made many of the condiments for these dishes so they didn't contain the sodium that store bought ones do. 

My love for Amy grows stronger daily.  Amy's love for me couldn't be more evident. Even when I give her reason to love me less, she loves me more. Please continue to pray for both of us as we journey down this unknown road together. But thank you God for bringing Amy to me. I only pray that I can do half as much to show my love for her as she has shown to me.

Generosity abounds - from 10/6/2014

I'll begin with the big news in case you are not a Facebook friend of mine and don't already know: I was discharged from Cleveland Clinic yesterday (Sunday)- one month to the day after I was admitted.  I was supposed to get out on Wednesday, but my INR (the measure of the coagulation in my blood) was too thick. It took several days to get me to the correct level, but I finally made it yesterday...and barely. I had to go to a nearby lab to have it checked this morning and it went up to 2.1 from 2.0. It needs to remain between 2.0 and 3.0 in order for me to be therapeutic. So, I do have to be careful that it doesn't slip back under, so I hope to get a little higher in the range to avoid another possible hospitalization. It was explained to me that one of the biggest concerns for complication with an LVAD (heart pump) is the development of clots inside the machine which can lead to some major problems. So in spite of my disappointment at not being discharged, I was certainly understanding that they were absolutely looking out for my best interests.

Now onto other things. Throughout this journey, I have been struck by the incredible generosity of so many people. I have mentioned all the prayers being said on my behalf, and it still boggles my mind that so many complete strangers continue to pray for me as much as this who know me best. I also mentioned the great care I received during my month in the hospital. This absolutely goes beyond the doctors and nurses. By the time I left, I had three different people who came to clean my room give me a get well card. The last cleaning woman made a point to say every time she saw me that she was praying for me. I find it humbling and very moving that someone who could easier just do her job and move on to the next person to collect her paycheck. Still, it is incredibly heartwarming that they understand that it's not just a job, but that they can make a bright difference for people who are experiencing a tremendously difficult time.

Yes, there have been some instances of financial generosity, and believe me, I have been moved to tears at this generosity that has been shown to me.  Although my health insurance is very, very good, it does not eliminate certain co-pays, including prescriptions, the number of which which has increased dramatically having been discharged. 

My insurance does include travel reimbursement to cover, gas and other travel expenses, food and lodging. However, that is a limited amount of money, which could easily be exhausted. However, because of the generosity of a family my wife Amy knows in the Cleveland area, we have not had to stay at hotels as much. Amy slept in my hospital room on a number of occasions, but that was not possible during the time I was in ICU. It was because of this family's generosity, that she had a place to stay at no cost.  It is also because of this family's generosity that I am now able to rest and recuperate in a home setting, rather than a hotel room. I can't tell you how much of a positive difference this makes for me. 

I could go on and on about the different examples of generosity I have been shown. And there really is now way to thank everyone for the various ways they have helped me along this journey. Please, do know that I deeply appreciate all that has been shown to me and will continue. And, please do continue to pray for me. That is the best generosity of all. And I am so pleased that these prayers are working as I get a little stronger each day.

P.S. I had an interesting experience when we went to the grocery store after my discharge. I am not strong enough yet to walk the grocery, even if I were pushing a cart, so I was relegated to driving one of those carts you see in grocery stores. Let me tell, you, it is a bit humiliating and also difficult to navigate a busy grocery store in one of these, so please be kind to those who have to use these.

Dealing with disappointment - from 10/3/2014

In the grand scheme of things, this is a mere blip and I won't really remember it when I look back, but I find myself frustrated that all signs were pointing to me being discharged by mid-week. As the time drew nearer, Wednesday was the day that kept being tossed around. That morning I awoke to my medication list and my nurse had written "Going home today, Oct. 1." That ended up not happening as my INR (the test that measures the clotting ability of my blood) had dipped below the therapeutic level. To be therapeutic, it needs to be between 2.0 and 3.0. Mine had been fine, but that morning it dipped to 1.8. Close, I thought, I'll get out tomorrow. No big deal. Thursday came and it actually dropped some more...to 1.5. My Coumadin doses had been increased for 3-4 consecutive days, so this was hard to imagine. We always say, Coumadin is "witch's brew." There seems to be no rhyme or reason to it and this was a clear case of that. Today, it crept up to 1.6, but sill it leaves my discharge date in limbo. I foresee a huge jump. I just hope I don't jump right past the 3.0 limit and end up having to stay because my blood is too "thin."

If that disappointment wasn't enough, one of my favorite nurses I've had here brought some other news: as of this past Monday, it is protocol that all heart failure patients attend a class on dealing with medicines used for heart failure and also dietary needs/restrictions, primarily reduced sodium. Apparently, I was not grandfathered in considering I entered the hospital well before the date they added this protocol. I went to the class and, as I suspected, I learned very little that I didn't already know. I have been through this before about a year ago. Still, I can't help but wonder what would have happened had I actually been discharged before I was made aware that this was a necessity to be discharged. Oh well, I guess it doesn't matter as I have now attended class, so I sit, hoping my INR makes the grade tomorrow and I get to leave.  The good news is, if I do get out tomorrow or even Sunday, it shouldn't extend my stay in Cleveland. My two follow up appointments are scheduled already and if all goes well, I can go home at the conclusion of the second appointment - even if it's not a full two weeks.  If my stay goes beyond this weekend, then my appointments will need to be rescheduled and I will be here longer.

Tomorrow will be my 30th day in the hospital. I was admitted on Sept. 5 and so I will have been here a full month, which is hard to imagine. I know I lost a few days due to the surgery and subsequent sedation. Still, it is stunning that I have been here that long. To put this in perspective, week one of the NFL was the first weekend I was here. 

Although I am disappointed to have seen the finish line for this chapter pulled further and further away, the good side of that is that I am getting amazing care here and have had some incredible doctors, nurses, nurse assistants and others taking care of me from the get go. In some ways, I've been spoiled.

I guess that's enough for now. Hopefully my next blog post will announce my release from the hospital.

Thanks again for all the prayers. Please keep them coming. Amy and I both draw strength from them.

Close, but no cigar - from 10/1/2014

All signs were pointing to a Wednesday (today) discharge. This morning, that turned out not to be true as I was kept another day to get my INR (Coumadin level) back into the therapeutic range as it dipped slightly below.  I was given a higher dose today, so hopefully I get back above and can leave tomorrow.  

Then I can begin my two weeks in Cleveland and hopefully will continue to gain strength and lessen pain.  I did a mile on the bike for a second day in a row. I also increased the number of steps I can do. We will see how I do going up a series of steps rather than just two at a time.  Truth be known, I wasn't doing well with steps before I had the surgery.

Amy and I took advantage of an overcast day to go to the rooftop pavilion today. It was sort of eerie looking at downtown which was covered in a gloomy haze.

Untethered - from 9/29/20014

I took another big step in my recovery today. I had the last IV drip (pain medicine) removed. That was one of the biggest hurdles standing between me and discharge since they are unable to send me home on IV pain medicine.  All indicators have been that I will be discharged by the end of this week.  From there, I will need to stay in the Cleveland area for another two weeks or so in order for them to be able to keep a close eye on me and because I will have a couple of follow up appointments during those two weeks.

I had a number of visiitors on Sunday, which helped lift my spirits a lot. My dad and sister  Kathleen came back. I hadn't seen them since just before my surgery.  Apparently I looked like a corpse to my dad when he saw me after the surgery, but before I was awake. Others who saw me were a bit less dramatic about it, but I guess I was looking a little gray. I was also not able to acknowledge their presence as I remained under sedation and apparently slept for about 3 days. (Who doesn't dream of doing that sometimes?) My other visitors, Pat and Jeff who I've been friends with since high school also made the trip up. It was nice to be able to watch football and root for our fantasy teams together. I also appreciate visitors Tom and Jeff who saw me closer to my surgery when I was much less coherent and put up with only seeing me for a very brief time before I decided I didn't want them to "see me like that." I have to say I feel a bit guilty about that as they probably drove abound 9 hours total to see me for such a short time.

Again, I thank you all for your continued prayers. I really can't tell you how humbled I am by the support and prayers I have received throughout these weeks. Please keep them coming as the road ahead still holds many unknowns and I'm sure there will be excitements, disappointment, sidetracks and successes. I look forward to sharing all of those with you.

Grace all around me - from 9/28/2014

Several years ago, I taught high school religion. Many times we would talk about grace and what that meant. By the book, it is a free gift from God which is not deserved.  Throughout these past weeks and months as my heart condition has escalated to the point it is at (with an LVAD placed to help my heart pump blood more effectively and essentially keep me alive) I have felt an enormous outpouring of  God's grace. 

A number of doctors I have encountered in my process of being evaluated for transplant have stressed that this is a genetic disorder and I didn't do anything to deserve what is happening to me. It's nice to know, but I really haven't approached this situation with a woe-is-me attitude (at least I have tried very hard not to.)  Because of my faith (which is far, far weaker than I would like it to be) I have been able to see God at work in my life, especially during trying times such as these. I won't say I have no fears or anxieties about my condition. There had definitely had times where I wondered if I would live to my 40's (I no longer have to worry about that one. I made it.) Still, it's easy to have these kind of anxieties, but in reality, I have trust in these doctors and a more confident than ever that this is going to turn out very well for me. I am also more and more confident that God has much more for me to accomplish during this life.

This is the grace I speak of. I can't count the times I have been moved to tears by a card a visit a phone call or a simple gesture of kindness. These have come from family, friends, friends-of-friends and strangers. Doctors, nurses, nurse's aides and the people who clean my room and many, many more have also shown me tremendous support and care.  It's easy to think that you are just another QR Code to these people, but I have never felt that way. In fact I see the opposite. I see people who cared for me at other times going out of their way to check up on me.  I Pass care givers in the hall whose eyes light when they see me making my way around the nurses station on a walk.  It has also come from total strangers. My favorite thing to hear is that I am being prayed for. I don't even know all of the different prayer lists I am currently on, but I am so thankful for every prayer that goes up for me. I can assure you, that is a grace in itself.

I am a very blessed man, I have immense support to help me through this. The speed at which this moved had left me focusing a lot on details and making sure things were in order, but I have had some time in the hospital to reflect on the movement of God in this situation and to know that Grace is abundant around me. The doctors said I did nothing to deserve this situation I find myself in. I see myself as undeserving of the kindness poured out all around me.

Thank you for your prayers. I truly believe they work and I am humbled to be prayed for at any time.