LVAD Update - from Amy - from 9/13/2014

On Thursday morning, Pat had surgery to place his LVAD (left ventricle assist device). The surgery took a little longer than expected, but he did great. Initially, we were told this would be an open heart surgery; however,  when the surgeon learned that Pat has never had his chest opened, he decided that he would prefer to do the minimally invasive surgery, if possible. This would allow an easier recovery and be better for transplant, as they will not have to deal with the scar tissue. Fortunately, the surgeon was able to do the minimally invasive surgery- Hooray! 

There's kind of a funny story about the surgery, but I want to tell Pat before I post it, so stand by. 

The night of the surgery, the medical staff had a little bit of trouble getting Pat's blood pressure where they wanted it, but he stabilized and has been stable since late Thursday night. Yesterday, his blood pressure was great, and they were able to start weaning back off some of the medications. One of his meds was being delivered through the ventilator, so Pat needed to be completely off that medication before they can move forward with removing the breathing tube. He went off that medication around midnight, so today, they will work on getting him breathing on his own. 

Pat is still sedated. They will also be easing up on the sedation, but they prefer that he be asleep until they can work on removing the breathing tube. The anxiety of waking up with the tube can cause patients' blood pressure to whack out, plus- let's be real- he'd be annoyed by the breathing tube, if he was awake. 

This is slow moving, but, as Pat would say, you can't rush into these things. His numbers look great, and we're just moving along as his body tolerates the changes. We are so grateful for the continued prayers and good thoughts on our behalf. 

Sidebar: Today is our niece's 7th birthday. I asked her what she was hoping she would get for her birthday. She told me a fart bat: "It's a long tube that you blow up, and then you sit on it and it makes a fart noise, like a whoopee cushion. And if I'm sitting on a metal chair and do it, the noise will be really loud."

Uncle Pat is so proud. 

Perhaps this model? - from 9/9/2014

On our recent visit to New York, we found this little gem at FAO Schwartz and I couldn't resist.

Well, that really escalated - from 9/9/2014

On Friday, I came to Cleveland Clinic for the second part of my heart transplant evaluation. I was told there was a chance I would be admitted. Although feeling a general fatigue, I have been functioning fairly well as evidenced by the adventures for my 40th birthday. I walked to all my appointments on Friday, but when my right heart catheterization was complete, Dr. Mountis didn't like the looks of things and I was indeed admitted. The purpose was to draw off any extra fluid, while also adjusting my medicines to most effectively control my heart failure.

What the doctors and I have learned is that my heart is weak and tenuous. The medicines haven't worked to improve my levels to a place where the doctors are comfortable sending me home, out of concern that something as slight as a cold could throw me into a dangerous place. Yesterday, the possibility was brought up to look at having surgery to implant a heart pump (LVAD-Left Ventricular Assist Device), as a bridge to a transplant. Today it was confirmed.

My case for transplant candidacy was heard today by those who met with me and those who did not (for an objective outside view). It sounds like all were in agreement that my candidacy move forward and paperwork is in progress for just that.

So, what does this all mean? I will have open heart surgery to insert an LVAD...probably early next week. Possibly as early as late this week. I got to watch videos of how to live with the device and it will be a bit tedious, but I look forward to the improvement in how I will feel as opposed to how I do now.

Thank you for your prayers thus far, and please keep them coming.

Beginning My Heart Transplant Journey - From 8/6/2014

I have decided to start this blog to chronicle the progress of my journey towards receiving a heart transplant.  A couple of months ago ago, it became official that my heart condition had progressed to the point of beginning the process of evaluation to see if I am a candidate to receive a heart transplant.

To give some background on my condition, I was diagnosed with the extremely rare combination of hypertrophic cardiomyopathy and wolff parkinson white syndrome at the age of 22 in 1996.  I had an ablation to correct the WPW.  The cardiomyopathy was not bad enough at the time that it required me to take any medicines.  Essentially, I went back to a normal life and felt as invincible as any other guy in his 20's would.

Then my 30's hit and it wasn't long before my heart problems began to rear their ugly heads again.  After suffering two strokes in the span of  about 6 months, it was determined that I should receive an ICD (defibrilator/pace maker).  This was implanted in late 2006, when I was 32 years old.  Soon after, I had a few bouts with Atrial Flutter which required another ablation in 2008.  One of the episodes of Atrial Flutter caused a non-obstructive heart attack.

It was clear my heart was getting weaker and the different issues with my heart were beginning to catch up to me.   Still I was well controlled and able to function quite well through medication.  I had a period of several years where I was relatively healthy.

Three years ago, tests were showing the heart weakening.  One year ago, upon having complications resulting from an infection when I had my ICD replaced, I was subjected to three surgeries (one to remove the old device and put the new one in, one to take out the infected device, and one to put the newest device in).  At the conclusion of this hospitalization, my cardiologist was concerned about my condition due to fluid buildup as a result of the heart failure progressing.  Upon taking care of the immediate problem, I was introduced to a nutritionist (who was, ironically, an extremely heavy-set man).  This man went over, in detail, a plan for keeping a low sodium diet to help control the amount of water weight I carried, since it was putting tremendous strain on my heart.  This resulted in a gradual weight loss of roughly 40 pounds in the span of about a year.

I was feeling much better and felt as though this would buy me much more time as it was taking a great burden off my heart.  Eventually, though, as my weight continued to decline, so did my heart function.  Over recent years, my immune system seems to have also taken a hit - or perhaps my heart just hasn't been healthy enough to combat what used to be minor illnesses.  When I get sick, it seems it takes a lot more time to bounce back from it.  I also noticed that walking even moderate distances was becoming more difficult and taking more than one flight of stairs required me to take a break.

The straw that broke the camel's back was when I was taking a cardio-pulmonary stress test and was on the treadmill.  Eight minutes in to the test, I was walking briskly when I quickly realized it was too much.  I gave the thumbs down (my indication that I had had enough), an instant before I blacked out.  My cardiologist looked over the incomplete test results and determined it was time to visit with a heart transplant team.

Thus begins my journey toward getting a heart transplant.

Dash for Donation

This Saturday morning, my wife Amy will participate in the Dash for Donation 5k run in Columbus, Ohio.  Amy has participated in runs, walks, marathons, etc... over the years, but this one is of particular interest to us as it is meant to draw attention to organ donation. She and I will be driving to Columbus on Friday.  We would love to have others come and support her and this cause, so if you're in the area, let us know.  I believe they are still taking registrations if you would like to run with Amy.

As I continue to wait for a donor heart to become available for me, please keep in mind that many, many others are still waiting for hearts, kidney's livers, lungs and more.  If you haven't signed up to be an organ donor, please do and know that your decision might very well save the lives of several people.  It's a wonderful way to leave a legacy in a very tangible way.

Unfortunately, most of m my older blog posts seem to have disappeared into thin air, so if you have any questions about me or my situation, please feel free to leave questions or comments.  I will be happy to respond along the way.  I will also try to fill in some of the gaps along the way.

I recently began a fundraising campaign through a non-profit organization called HelpHOPELive. This has allowed me to solicit donations to help offset the current and future costs that will come with my pre-transplant preparation and care, my transplant itself and then post-transplant care.  Although we have health insurance that will cover a majority of the enormous expense, there will still be much that will come out of pocket including copays, prescriptions, travel, lodging, food.  If you are able to contribute, I would appreciate any help given as well as any prayers you can offer for me, my wife, our family and, of course, also for the family of my future donor.

I have tried to maintain regular updates on my campaign page, so that may help fill in some information on my situation as well.

HelpHOPELive

Since I was added to the list of patients in need of a heart transplant, and had my Left Ventricular Assist Device (LVAD) placed, life was changed forever.  It's hard to believe it's been 7 months already!  The heart pump has been been immensely important in improving my quality of life and giving me more time to be able to await a life-saving donor heart.  As you might imagine, the expense of this is quite high and I'm not even sure I fully grasp what lies ahead in terms of the costs.

As a result of my weakened heart, I was forced to leave my job at Glenmary Home Missioners, which has caused two additional burdens.  First is my income.  Although I have qualified and been approved to receive disability pay, it is significantly less than I was making while I was working.  Second, I am on a different insurance plan which does not cover as great a portion of the medical and travel related expenses I am incurring as a result of my transplant related needs.

After discussing our financial situation with our social worker at the Cleveland Clinic, we decided it was best to start a fundraising campaign.  We decided to use m.HelpHOPELive.org and thus far we have been very pleased.  The way it works is that donations can be made in my honor to them and they keep the money in a regional fund (Great Lakes Heart Transplant Fund).  Aside from the very small percentage that is kept by them for operating costs (4% for cash/check donations and 7% for credit card donations), all of the money donated in my honor is available only to me.  If you send a check, you must put in honor of Patrick McEntee on the memo line of your check.  Your donation to HelpHOPELive in my honor does two things.  First, it makes it so Amy and I do not have to pay taxes on donations that people make. Second, and more importantly for you, it allows your contribution to be tax deductible since HelpHOPELive is a 501(c)(3) nonprofit organization.  One other thing to consider is if your employer will match your donation to HelpHOPELive in my honor.

Prayer truly is the greatest support we can receive at this time and always.  However, if you are able to help out in other ways, we would be most appreciative.  Here is a link to my donation page https://m.helphopelive.org/campaign/8748 where you can make a contribution right on the site.  You can also go to the main HelpHOPELive site and search for my name (Patrick McEntee OH/Heart).  

It's always difficult for me to ask for help in such a way, but this is something we need.  I know many of you have expressed a desire to help in any way possible, so I am grateful to have your to help at this time.  As always, your prayers are most welcome.