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.

Just when I thought... - from 9/25/2014

I guess I'm learning a bit of humility in my recovery from LVAD surgery(and not just because I need help going to the bathroom). I have found times when I'm in so much pain and feel so "blah" that I wonder if I'll ever get through this. Other times, I sense great strides and full recovery is just around the corner. The truth, as always, seems to lie in between. In other words, I can't let my highs get too high, nor the lows too low.

As I mentioned earlier, I had the triumph of a BM on Sunday, but that also came with the difficulty of vomiting when I had been feeling pretty good aside from that event. They were still finding the right balance on my pain medicine where I wasn't in severe pain, but also was clear and lucid. I definitely felt like I was a bit out of it and sleepy with minimal appetite for a few days and it seems that was the likely culprit.

So, the pain was improving and I went out of the room walking with a physical therapist on Monday. The first trip was a jaunt to the end of the hall to a sitting area where I rested briefly before returning to my room. Each successive day saw me doing more walking and challenging myself. Today, I walked down to the cardiac rehab gym and was able to get a half-mile (8 minutes) in on the recumbent bike. It wasn't without some extra pain, but I still felt good having done it. I also went walking with the physical therapist without the walker today and had very few balance problems.  Odds are I will get to leave here walking as I walked it...without assistance.  The extra pain can mostly be attributed to an ill-timed cough that I wasn't prepared to brace for the night before. It felt like everything was going to fall out of my chest and took hours to get under control. The residual pain has felt like a pulled muscle in my rib cage near the sternum, which has experienced its own trauma.

The coolest part of today was when Amy took me to the rooftop pavilion. From there I was able to see downtown Cleveland, Lake Erie and some of the buzz from the streets below.

Well, I didn't run it down the walls - from 9/22/2014

Many of you know I love a good poop story. If not, now you do. So with that in mind, I will share a very real phobia I had about this surgery and recovery. That is, how in the world am I going to poop after this, let alone clean up? The reality has been that little by little, these phiobias fall. Each time, it costs another bit of my modesty. Repeatedly I was told that nurses love when patients poop no matter the situation, although I feel safe in my belief that they'd rather not clean up a patient's blow out.

 Alas, nature will always take its course and this situation was no different. My LVAD surgery was Sept. 11. By Sept. 21, I still hadn't pooped. As much as folks involved in my recovery tried to keep me calm about that, the reality was that I was missing out on all those days of poop stories I could have been having. One nurse said she didn't care if I ran it down the hallways.  One doctor even joked about giving birth to a poop fetus.  Sunday morning was rolling along on the tracks I  had gotten used to. A few highs a few lows, but progress was being made. Shortly after noon, but before the Browns kicked off downtown (I'm in Cleveland, so that's what I get on TV), I took the Browns to the Super Bowl myself. Success! More modesty lost but overall a net win.

This is about all the adventures I have energy to share at this point, but hopefully, I'll be writing more of my own blogs in the near future. Thanks again for the prayers and please keep them coming!

Sunday Funday - from 9/21/2014

Pat is writing the next post, but here's a photo from yesterday: sitting in the chair, monitoring his fantasy football teams.

Mama said there'd be days... - from 9/20/2014

When Pat was referred for assessment for heart transplant, I was connected, by a friend, to someone whose husband had a kidney & liver transplant. She told me that this would be a roller coaster of emotions- and we definitely hit some of those ups and downs. 

On Thursday, having been cleared to leave ICU roughly 36 hours earlier, Pat was moved to the step down unit when a bed finally came available. At first, it was great- it's a private room, with a door, so it's substantially quieter than the ICU. There are two large windows, providing natural light and a decent view. A "couch" folds out to a bed, so I can stay with him at night- all perks. As a bonus, one of the docs or nurses had added a note to Pat's chart, and everyone knew it was our anniversary. The nurse even brought us two red velvet cupcakes. 

Then, we started downhill.

Medication changes were made that were different than what was explained in the ICU, including changes to pain medications. Nursing assistants were sent in to take vitals, but had no idea how to check his blood pressure with the continuous flow pump. In the middle of the night. And they apparently didn't know how to work the lights either. Around 5 am, a nursing assistant wanted Pat to walk to the scale, when he'd hardly pivoted from the bed to the chair. His PICC line started bleeding substantially, inexplicably. Around 8 am, a nurse came in with FIVE students. Shortly after that, we were told that Pat would be leaving the unit for an appointment. I asked four different people for an explanation of the appointment, and none of them knew what it was about. I asked for additional information about a procedure- not for them to change it, just to help me understand a little more- but never got the promised information. The communication issues, the lack of response, the confusion about pain meds continued. Pat was grumpy, uncomfortable and annoyed. Then the massage therapist came in and, after a brief conversation, said, "I left a message with the nurse last night; he didn't tell you?" No. No, he didn't.

And the frustration got to me. Meltdown.

I was embarrassed when the tears stung the corners of my eyes in front of the nurse; when the cardiologist, the pain specialist, the LVAD nurse practioner and her student AND the nurse manager all came in, I was mortified. It made me feel a little better when the cardiologist said that I had been a rock and had such a good perspective, so she knew if I was this upset, things were bad. But still. 

We worked together to make a new plan. The nurse manager gave me her business card with her cell phone number written on the back. The pain specialist is fantastic. She listened carefully, developed a plan, asked what Pat and I thought about it, put it in place, and then called later to see how things were going. (She also showed us pictures of her pet pig!) The cardiologist brought in the computer and went over things with me. She helped me understand a few things and made some adjustments after hearing some of my concerns.  (She also gave me a hug.) The LVAD nurse practioner reviewed the whole plan, made sure we were all on the same page, and came back later to see how things were working. 

There were a few bumps overnight, but today was notably better. Everyone came back to check in this morning. The pain plan was slightly adjusted again. Pat spent most of the day sitting up in the chair. We both were able to take good naps. The new plan has everyone feeling better. I know this is part of getting used to how things work here. Really, these things can happen anywhere. But I hope there are more days like today and no repeats of yesterday. 

On hemodynamics and babies doing yoga - from 9/17/2014

Pat has been bugging me to write a new post for days now. So, that's a sign that he's getting back to normal, right? 

For as slowly as he progressed for the first three days, things have progressed quickly the past few days. His blood pressure and heart numbers have looked great since Sunday, and he has maintained those levels. 

On Sunday, they backed off the sedation and Pat woke up. He spelled out "ok?" with his finger on my hand, he smiled when I told him the Reds won the night before, and he asked me to find football on television. After his breathing tube came out, his voice was very weak, due to the tube irritating the vocal cords, but he still managed to say bad words when one of the doctors told him about RG3's injury. 

On Monday and Tuesday, the chest tubes were pulled, the Swan-Ganz catheter was removed, and he sat in a chair for a couple of hours each day. As more lines and tubes were removed, the more Pat could move around,and he started sleeping a little better. The plan for today is to move him to a "step down" unit, where he will start with more physical therapy (being in bed for essentially a week has caused him to lose some strength) and we will both be trained on his LVAD and the daily tasks associated with it. 

One of the side effects of the three days of sedation and pain meds is that Pat has been a little confused at times. Most of the time, he's perfectly lucid. He knows who he is, where he is, and why he is here. On Monday, he asked for his phone to check his fantasy teams, and he told someone that our anniversary was in three days- so he knew when our anniversary is and what day it was that day. 

Pat has crazy dreams, though, and when he first wakes up he has difficulty telling what's what. Here are some of the gems:

"All of the babies I know were doing yoga." (As he was naming which babies were there, he fell asleep.)

"Brother David, Fr. Dan, Fr. Neil, and Fr. Chet were here last night. They came by helicopter while we were in the basement, because it was raining inside. And the band went wild." (In case you're wondering the band was not Journey.)

"Let me tell you: it rains A LOT here. Inside." 

"Ainsleigh (his goddaughter) came for a photo op, but then she chickened out." 

"There's a football field over there (pointing to the next space over.) That's a weird place for it." When I told him there was no field there; maybe he was thinking of the field downtown, where the Browns play, he said, "No, not that one. I think it's probably their practice field, though." (Inside. In the Clinic.)

"I was supposed to have an auto shop." 

There were a few others I wrote down. And there may be a video. And a long exchange over the imaginary blue post card that he thinks I'm hiding from him. It has been welcome comic relief, for me, and his clarity is getting better each day. 

We have received some cards and packages while we were here- until we have a chance to thank you individually, many thanks. We appreciate the thoughts and prayers, as Pat continues to recover and get stronger.