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My Story


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My Story


NEW UPDATES:

  • See my new blog post about the very special meeting with Traci, the mother of my donor Sunni - here
  • For those visiting from my recent story on GatorCountry.com, see photos from my Agin' Gators Soccer Weekend - here
  • Check out my Donate Life Arizona radio commercial that is currently running in the Phoenix area - here

I started writing about my story in 2010 when I first learned of my serious heart condition. I am still in the process of documenting everything that has happened and will continue to add more along the way as my journey goes on.  Now in 2016, It is really a miracle that I ever made it to my 50th birthday last year and I am blessed to be here to share my story.  I hope you can find this both interesting and inspirational and I welcome you to reach out to me via email at mark@gatorheart.com with any questions that I may be able to answer. 

2010: The Beginning (Written March 16, 2010)

My name is Mark Wilson and I have been living in the Northern suburbs of Phoenix, Arizona for about 4 years now.  I am 44 years old and happily married with two wonderful children, ages 14 and 10.  My wife and I will be celebrating our 20th anniversary at the end of this month and I am thrilled to say that I will be here and on the road to recovery to experience it!

It is hard to believe that just over a week ago today,  I was in intensive care with congestive heart failure where my heart was enlarged and struggling to pump and function as it should. 

This all started in early February when I started feeling sick with what I thought was just another cold that comes with your standard congestion, coughing and feeling a bit run down.  I went to my primary doctor to get checked out and received some antibiotics to help clear up the cold --- I had been here before and usually things clear up in a few days and you are back in action. 

I did notice the typical congestion go away after about a week, but I could still not shake the cough and was now starting to feel pain in my stomach, was having more problems sleeping, felt more fatigued and just not getting better.  I went back to my primary doctor for a follow-up visit and right away she wanted to dig deeper and ordered several tests for me including some blood work, a chest x-ray, and an abdominal ultrasound to see what was going on. 

On Friday morning March 5th, I went to the lab to get my x-ray and ultrasound tests thinking that I may have a stomach problem of some kind.  What I soon came to find is that my heart was enlarged and I was experiencing congestive heart failure.  I knew something was not right when the lab asked me to sit tight while they reviewed the results of my tests with my doctor.  My doctor then spoke with me while I was still at the lab and advised me that I needed to head directly to the hospital – do not pass go or go home first.  I am so thankful for my doctor for being so diligent and for following through to get to the bottom of my problem – and she continued to do that even as I transferred into the care of the other doctors.

My wife quickly joined me at the lab and drove me over to Arrowhead hospital where I was immediately admitted.  The next thing I knew, I was in the “Cath Lab” at the hospital where the doctors decided to give me a balloon pump to help my heart function as my ejection fraction was only about 10%.  After that procedure, I was brought to ICU where I could be stabilized and they could start to treat my condition. 

After further review and consultation, the doctors at Arrowhead (along with my primary doctor) felt that the best course of action was to transfer me to the Mayo Clinic for further review and potential consideration for a heart transplant.  Wow, this was all moving so fast and while it was very overwhelming, I always felt as if I were in great care – modern medicine is truly amazing!

After a couple days at Arrowhead, they stabilized me and removed the balloon pump prior to my transfer to Mayo.  On Monday March 8th, it was off to The Mayo Clinic in an uneventful ambulance ride.

Once I arrived at Mayo, it was back to the “Cath Lab” for another procedure where they began their process to find out why this happened and whether I would both need and be eligible for a heart transplant.  I have to say that everyone at the Mayo Clinic was truly amazing and given my situation, there is no place I would have rather been – they are truly top notch and that should be no surprise to anyone. The process is comprehensive and while their review did not determine a specific known cause, they ruled out all of the other major issues and I may never truly know exactly why this happened.

However, the treatment for all other potential causes is essentially the same and that is a treatment through specific heart medication and healing where hopefully my heart will recover so I can lead as healthy and productive a life as possible.

The first couple days at the Mayo were spent in ICU as I still required IV support and they continued my treatment.  Soon I did get to move out of ICU and that was one of the first really good days where I could start to see some light in the tunnel.  Over about the next week, I started to progress along the path of transitioning to the medication as they continued to watch me closely on how I would respond.

The good news is that I am otherwise quite healthy and perhaps that also helped as I continued to make solid progress over the week to where I even was up and about walking and feeling much better.  With the help and care of everyone at The Mayo Clinic, I was soon approaching the day I could go home.

Given how positive my response to the treatment has been, the near-term goal was all about letting the medication help and watch closely my progress in the coming months.  While the possibility of a future heart transplant still exists for me, all focus is on improving the one I’ve got and hoping that will not be necessary.  Only time will tell and I fully intend to do everything in my control to make as full a recovery as possible!

On Monday March 15th, the happy day arrived and I was able to come home!  That was a very good day indeed and one that will last with me forever.

That is the story that leads up to today and now a new story begins as I embark on a new chapter in my life with a renewed joy and appreciation for life, family & friends, faith and happiness.  I will have to lead a new path as I learn to live with heart failure and now it is all about going forward and recovery – and I look forward to the challenge!

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Initial Recovery


Initial Recovery


2011: Initial Recovery (Written on March 5, 2011)

It is now one year ago today that I was admitted to Arrowhead Hospital after learning that I had an enlarged heart. What a difference a year makes and I am pleased to say that I am doing well and continue to improve on my road to recovery. My wife Pauli and I had a quiet celebration together and went to the movies to see The Adjustment Bureau starring Matt Damon. This film was quite appropriate for the situation and I felt “The Chairman” upstairs must have been looking out for us as well as our plan is far from complete.

Well...quite a bit has taken place in this past year and let me just say that I am looking forward to “March Madness” this year to be strictly about college hoops as I root for my 2 favorite teams - Florida and Wisconsin. Both look strong heading into the tournament and it will be fun to see how far they can both go!

As for 2010, I am sure glad to see it over and in the rear view mirror. We spent the holidays in Wisconsin with family and returned to Arizona to ring in the new year. I then started the new year back to work at a new job and am very thankful to be back in the game. 

I did start 2011, however, with a parting gift from 2010 which came in the form of Valley Fever. Apparently, I picked this up likely from jogging outside near the golf course in December and by the end of the holidays it was coming on.  Fortunately, the worst has past now and it is all but faded away - but January was a challenge, being back to work and dealing with everything else.  But hey, I’ve made it this far and I was not about to let that get the best of me!

As for my heart, all is going well and I am now ramping back up my exercise routine to about 3 miles a day plus. I am maintaining my New Normal program and after one year am within 2-3 pounds of the weight I was when I was released from Mayo. That is pretty amazing to me and it really has taken a new level of discipline - and one I am pretty proud of!

I have also made the transition from the care of Mayo Clinic to a Scottsdale cardiologist who was referred to me by my doctor at Mayo. I will forever be thankful to my doctors and caregivers at Mayo - they truly are first class all the way and I would not be here today without them!

Another big step in my recovery came in November of 2010 when I had a procedure to get a defibrillator/pacemaker. My doctors all strongly advised me to have one given the increased possibility of experiencing arrhythmia after heart failure.

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While primarily there as a precaution (which I am very happy to have), my Medtronic device also has pacing capability and is helping me as well. The most simple way to describe it is that the defibrillator function is there to protect me if my heart races too high and the pacemaker function is there to “nudge” me along if my heart rate gets too slow. This is especially helpful given my heart medication which is designed to slow things down and reduce extra effort on the heart. 

This medical technology is truly amazing and the device is even wireless to connect to a home monitoring device that I keep on my nightstand to keep an eye on things while I sleep. On the referral of my new cardiologist, I had a new doctor handle the procedure and he and his team were awesome. I liked him even more when I found out afterward that he was also a graduate of the great University of Florida - how interesting is that!

They have recently checked everything out and my device is working as planned and you would be amazed at what they know from the data collected. They were able to tell my activity level, when I may have been awake at night, and more...wow, pretty amazing stuff.

So, much has taken place in the past year and most importantly I feel great and continue to improve. It is a long journey, however, and I plan to keep fighting every day to stay positive and to stay the course. Every day is a blessing and I appreciate each and every one of them!

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Eye Of The Hurricane


Eye Of The Hurricane


2012: The Eye of The Hurricane (Written August 16, 2015)

My other updates were written more in “real-time” and now I will help to fill in the story as my journey continued into 2012.  I would have to say looking back that the latter half of 2011 and 2012 was definitely the best period in my journey pre-transplant.  I was back working and focusing on staying fit and following my new routine. I felt pretty good and was managing myself through heart failure the best I could.  I kept active and maintained my weight with the help of my daily protein shake that I would make at work.  This helped in a few ways as not only did it provide a healthy meal replacement for me, but it was a staple in my routine that kept me on track. 

I brought my Vitamix blender to work along with frozen strawberries and a banana virtually every day and that was my lunch.  My blender was so loud that I think everyone around knew that it was lunchtime as I made my shake each day right around the same time.  I closed the break room door to keep the noise down and after making my shake I went back to my office and continued on with my day.  Looking back, I probably should have taken more of a break as most days I was back at my desk within 15-20 minutes.  It was my routine and I stuck to it.

I was also fortunate that the company had a nice gym with a couple treadmills, machines and some weights.  My normal schedule was to hit the gym at the end of my work day for cardio and some crunches.  This continued on through a fairly uneventful year of 2012.  I felt good and mentally was building confidence that I could manage my heart issues and was back in control as much as possible.  I met with my cardiologist regularly, took my meds to help improve my heart function and followed my heart healthy routine the best I could.  

When all this started, my heart function (Ejection Fraction) was down to about 10% and as I navigated through my initial recovery I was able to build that back up to 36%.  I was very proud of this and seeing and feeling that progress definitely fueled my hope and I always looked forward and took on each day as it came. I was essentially able to do most everything I wanted to do physically, was working and living close to a normal life.  

Little did I know at the time what was soon to come as I hovered in the eye of the hurricane.  Having lived in South Florida for many years and through the tragic Hurricane Andrew (pictured above), you learn how a hurricane works. It starts with a strong first wave and then as you transition into the eye the sky literally clears and you can’t believe there is even a storm or that the storm has passed through.  Then the back end of the storm comes through and generally with more force than the first wave causing the most destruction.  I was about to face the second wave and did not even know it…

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Electrical Storm Brewing


Electrical Storm Brewing


2013: Electrical Storm Brewing (Written August 31, 2015)

The eye of the hurricane was gone as 2013 began and the year started literally with a bang and a shock.  One of my doctors told me that about one third or more of heart failure patients may develop arrhythmia due to reduced heart function.  A weak heart is more vulnerable and likely to become unstable and this is the primary reason why pacemakers and defibrillators are implanted in patients with heart failure. As I detailed in the Initial Recovery stage of my story, my first defibrillator was implanted in November, 2010.  For just over 2 years it was smooth sailing and other than setting off a metal detector or being held up for extra screening at airport security, I became used to having my device and almost forgot it was there. It did, however, give me a sense of peace and comfort to know that I had the ultimate backup plan right inside me to protect me when needed. 

It was early January when one evening I rapidly started to feel like something was wrong. All of a sudden I was light-headed, disoriented, short of breath and remember just shaking my head to try and clear things up. I had no idea at the time that what I was experiencing was ventricular tachycardia, an event where essentially your heart starts to race out of control and if not corrected will send you into cardiac arrest. Without immediate care or defibrillation, you are not likely to survive. 

                                                                                                     EKG Example showing normal heart sinus rhythm with a run of VT (Ventricular Tachycardia)

                                             

                                                  EKG Example showing normal heart sinus rhythm with a run of VT (Ventricular Tachycardia)

After what felt like a minute or two, things started to clear up and I felt normal again. I thought to myself how strange that feeling was and what I did not know is that my heart rhythm had corrected itself. Now I was nervous and confused as to what just happened and tried to shake it off and continue on.  It was about 20 minutes after that first event that I started to have the same odd feeling again! This time it seemed to come on faster and while difficult to explain it felt like a wave came over me. Then it happened…wham! With what felt like a swift kick to the chest, my defibrillator fired by administering a shock that would reset my heart back to its normal rhythm.

After the shock, and the shock of the shock, I felt fine and back to normal. Just thinking about that night while writing this makes me cringe.  I knew my instructions from the doctor that if I felt okay and did not need emergency assistance I was to call to report my event, which I did. The doctor on call asked if I felt better and advised that if I experienced another shock within the next 24 hours I was to go directly to the emergency room. Otherwise, I would go in for an office visit so they could download data from my device for more details on the event itself.  

As I look back now, it is clear that this event was the sign that my recovery had taken a turn for the worse and moved me on the path to an ultimate heart transplant.  I continued to power on the best I could and did not have another shock right away so tried to just resume my day-to-day life. This was not easy.  I hate to keep using the natural disaster analogy, but an earthquake comes to mind. I also lived in the San Francisco Bay area for about three years and fortunately only experienced a couple minor "rollers" in my time there.  Imagine someone telling you that you will definitely be in an earthquake soon, but they could not tell you exactly when.  Oh, and please go about your normal day and be productive.  I had a fault line running through my heart and it was not getting any better.

In June of 2013, after several more shocks that continued to come more frequently, I made the decision with advice from my doctors to undergo an ablation surgery.  This is where they essentially feed a scope into your heart and attempt to "burn" away the bad cells inside your heart where the electrical failure is. Think of an old extension cord that does not work and you splice out the section that is bent and does not allow the current through.  There is so much more to this and to have this done in your left or right ventricle is the most challenging.  

After the 6 + hour surgery, my doctor said that he found and ablated three definite problem areas and identified one other that he was unable to fully address.  Going in, I knew that this would not fully correct the problem, but if it could minimize the amount of shocks it would be a success.  For a period of some months all was calm and seemed to have improved, but I was still always wondering when the next earthquake was going to hit.

I had several other events post-ablation, but the one I am about to describe stands out.  I was on a business trip in Dallas, TX (also a place I had lived for about 3 years, I know - we moved a lot) and after meetings one day we went to a local restaurant for dinner.  Well, as we all sat at the table I started to get that feeling again. I remember looking across the table at my colleague from work and he just had a look of concern.  Then it happened again - Wham! I think this time everyone else was more in shock than I was because I knew what was coming just before it hit. I immediately felt better and tried to calm everyone down that I did not need to go in to the emergency room, but that my life had just been saved again by my device as it is designed to do.  To this day I am still thankful to those who were with me that night and for the understanding and on-going support they have given me.  They know who they are and I feel for what they must have been going through too. My colleague from work probably slept as much as I did that night as he was practically outside my door ready to help at a moments notice.  I had called my doctor that night and assuming no other events, I was clear to fly home.  We were scheduled to fly back to Phoenix the next day and I made it back safely.

Another critical part of my journey in 2013 is that when my arrhythmia came on, the doctors also addressed the issue by adjusting my medication and adding an anti-arrhythmic drug to my regimen.  This did help, but it also created an internal tug of war with my recovery. The medication to improve my heart function had to be adjusted to support the new anti-arrhythmic medication and this became a delicate balancing act to try and manage two problems at once.  This along with my continually weakening heart was ultimately a challenge that would send me spiraling downward and back in the hospital. I just kept on trying to manage the best I could while still working, carrying on and staying positive - I was going to beat this thing! 

Wow, 2013 was a tough one, but again I did not know what was soon to come as I entered into 2014 which was the absolute worst AND absolute best time of my life in this heart journey of mine.  Stay tuned for my next updates where I teetered on the edge of survival and ultimately received the greatest gift of all - life!

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On The Edge


On The Edge


    This is a picture of me with my LVAD - using the fanny pack for my controller and batteries, which I could slide to each side of my waist to balance everything out. I found this the most comfortable for when I ventured out and also did my workouts.

 

This is a picture of me with my LVAD - using the fanny pack for my controller and batteries, which I could slide to each side of my waist to balance everything out. I found this the most comfortable for when I ventured out and also did my workouts.

2014: On The Edge (Written March 20, 2016)

As 2014 began, my electrical storm was still with me and I found myself bouncing in and out of the hospital for several weeks in mid-March (essentially 2 years ago today - wow, what a difference from how I feel today)! Talk about March madness…I only wish I could have been focusing on basketball games back then, but I was about to hit the wall very soon.

In early April, I was admitted to a Scottsdale hospital (not Mayo) after receiving multiple shocks within a 24-hour period - and when that happens, you are instructed to go directly to the hospital (don’t pass go, etc). The plan was to switch my anti-arrhythmic drug to Amiodarone which is the most powerful one available. This drug has some long-term side effect issues including liver function and others, so due to my age, the doctors wanted to avoid using it on me initially. As my condition was only getting worse, this was now required. The challenge with this transition was that I had to stop the drug I was on and then on-board the Amiodarone which requires a longer time to ramp up into the system and be effective. 

It was this transition that nearly cost me my life as my heart took the opportunity to let loose and I remember being shocked time after time. This was the point in my journey where I think I was the most afraid and remember looking at the clock and the second hand just waiting for the next episode and shock to come.  After three times in less than 15 minutes, I passed out and the medical staff needed to revive me with external defibrillation. I had literally “coded” three times and needed to be revived each time. 

I was literally on the edge and thankfully survived an emergency transfer back to Mayo Clinic where my doctors there took over and immediately inserted a balloon pump to try and save me. This was like deja-vu from 2010, but much worse because I was in such critical shape this time. The balloon pump helped right away and that enabled Mayo to quickly initiate an updated evaluation for heart transplant. To say that this process is thorough is an understatement and I must have had every inch of me reviewed and met with over a dozen doctors, specialists and coordinators. I was clinging to life and was being evaluated at the same time, but they did what they had to do and I just tried to power through it any way I could - it was rough.

Due to my prior Valley Fever, the docs were concerned about a nodule found in one of my lungs. They were pretty sure it was not cancerous, but to make sure and illustrate the level of care taken for evaluation, a lung biopsy procedure was performed to confirm. It was not cancerous and I was able to pass that gate. At this point, I was stabilized with medication and my balloon pump had been removed (it has a short shelf-life of only several days).

The doctors felt that I may be more comfortable at home and therefore it was decided to send me home on IV medication while I recovered further. This required set up from a home health care provider and was a little scary. Well, that experiment did not last but about 15 hours before I again received multiple shocks at home sitting in a chair and needed an ambulance to take me back!  The challenge was that because I was in immediate danger, the EMTs had to take me due to protocol to the nearest hospital, which was not Mayo. After arriving at the hospital, they quickly made arrangements to get me back to Mayo - but it was several very frustrating hours before I made it back.

Upon my arrival back at Mayo in mid April (yes, March Madness continued on well into April), I was immediately back in the Cath Lab for another balloon pump. This time I was in for the long-haul at Mayo and stayed there for an additional three months as I found myself right back on the edge of the cliff once again. To make things even more challenging, I picked up Pneumonia and C diff, a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. This was all while I was in ICU and could literally not lift a finger or leave my bed. I look back on this and still can’t believe what I had to go through and that I ever made it through it all.

It was exciting to get word in early May that I was now activated on the transplant list, but that excitement was quickly set aside as my condition deteriorated once again causing me to be put on Status 7 (which is like injured reserve in sports).  While on Status 7, I would not be eligible to receive a heart because I was too unstable. It was now time for balloon pump #3 and options were starting to get much more serious. Oh, and while you are on a balloon pump for several days, you must stay in bed laying flat on your back without the ability to bend one leg - not fun.

 ( A ) intra-aortic balloon pump. Body outline to illustrate how balloon pump is inserted in the body through the groin. ( C ) represents the Impella. In my case the Impella was inserted through my chest as they were not able to insert through the groin (possibly after having done several balloon pumps prior).

(A) intra-aortic balloon pump. Body outline to illustrate how balloon pump is inserted in the body through the groin. (C) represents the Impella. In my case the Impella was inserted through my chest as they were not able to insert through the groin (possibly after having done several balloon pumps prior).

 

As my balloon pump was only temporary and my condition was such that I still needed assistance, the doctors took the next step and implanted an Impella device to take over for the balloon pump.  Once in position, the Impella device unloads blood from the left ventricle and expels it in to the ascending aorta, the same effect that happens with the pumping motion of your heart. This procedure was successful, however as true for the balloon pump, the Impella also has a limited shelf life. It could last for a couple weeks vs a couple days, but still was a temporary fix.

I was now about to approach my darkest hour as the time began to run out on my Impella and my condition had not improved to where my own heart could keep up on its own. I was still on Status 7, so a heart transplant was off the table at that moment and therefore the next step for me was to move to an LVAD or Left Ventricle Assist Device (the same kind of device that former Vice President Dick Cheney also had prior to his transplant).  The challenge was that my condition was so weak, that there was great concern that I would not survive the LVAD procedure. Talk about being stuck between a rock and a hard place, this was it. My Impella had to come out as it was starting to destroy my blood cells and my kidneys were starting to fail at the same time. It was so touch and go at that moment that the doctors did not feel I would survive the night if they removed the Impella. The decision was made to remove the Impella and insert the LVAD at the same time and the risks were higher than ever before. I still don’t know what the exact odds were (and not sure I want to know), but by the grace of God and the incredible team of professionals at Mayo Clinic, I survived and was now living with a mechanical pump running my heart!

 This is an example of the LVAD pump that was similar to the one I had. My battery pack unit was combined with the external controller, but this is a good general illustration.

This is an example of the LVAD pump that was similar to the one I had. My battery pack unit was combined with the external controller, but this is a good general illustration.

 

When I woke from the LVAD surgery, I did feel a little better but was still in ICU and totally bedridden for about 2-3 weeks. I required a feeding tube as I was not eating and just so weak that I could not do anything for myself. This was my lowest point, but I was alive and I literally had to relearn how to do everything. I could not touch the nose on my face and had lost all strength - I literally was a shadow of myself. 

People ask me how I survived all of this and it was many things, but most of all the love from my wife and kids, family, friends and even colleagues from work who supported me and prayed for me as I recovered.  My wife literally stayed with me in the hospital every single night for nearly 4 months as I went through everything and I would not be here today if it were not for her. It was not my time and I can’t say enough about the entire team at Mayo for the care they have given to me, they are simply amazing!

As June rolled in I was able to move out of ICU and to a regular floor at Mayo. I still had my feeding tube and was fighting my way back including multiple rounds of dialysis for my failing kidneys over several weeks. Fortunately with my new LVAD pump on-board, my kidneys rebounded and things started to improve. I was able to spend Father’s Day and my birthday in the hospital with my family and was at least able to enjoy that special time with them.  One of the greatest additional benefits from the LVAD for me was that the electrical storm went away! I never received a single shock after my LVAD and that alone was a blessing!

Living with an LVAD had its challenges including the fact that I was now dependent upon electrical power from a wall socket or my dual battery pack that rode along side me everywhere I went. To keep the motor running, which essentially was my heart, I had to be connected to power. I had a drive line that came out of my side by my stomach and attached to my controller and battery pack held in a pouch by a shoulder strap or fanny pack around my waist. Every day required a dressing change at the site of the drive line on my side and my wife was trained to take over when in mid-July I was released to go home with my LVAD!

Read on in the next chapter - Gift of Life to find out what it feels like to get that special phone call for a new heart and waking up with the greatest gift of all - life!

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Gift Of Life


Gift Of Life


2014: Gift of Life! (Written March 20, 2016)

I have to admit that coming home with my new LVAD in July was a bit scary. I felt much better with the pump doing all the work, but being away from the hospital after all I had been through was hard to adjust to. This time it was mostly in my head as I wondered if I would just end up right back in the hospital like the last time. Thankfully everything went pretty smooth and I was able to turn my focus on recovery and building back my strength.

The important thing now was to get stronger and back on the active transplant list - no more Status 7! That happy day came in mid-September when I was officially re-activated as Status 1B. At a high level, the waiting status top levels are 1A, 1B, and 2. Typically those listed at 1A are the most critical and waiting while in the hospital. Level 1B and 2 can be at home and I have been told that people listed as 1A’s and 1B’s are those most likely to receive a transplant. 

    Learn more about how it all works at the  UNOS website    

 

Learn more about how it all works at the UNOS website

 

Many factors go into receiving a donated organ including the status level, blood type and body type. Even though someone listed as a 1A has a priority over my 1B status, for example, all the other factors must match before transplant. The system is designed to identify the best match for the person in the greatest need within the designated region they reside. I was also instructed to stay within 2 hours of Mayo and to be ready to come in at a moments notice.

Not everything went perfectly while at home with my LVAD. We did have one scary night that reminded me how fragile I still was despite feeling much better with my device powering me. At night, I had to run a power cord in bed with me so I could plug in while sleeping. My controller pack and batteries were also always with me and those sat to my right side as I slept on my back. My drive line came out my right side and it was uncomfortable to lay on my side, which was a pain because I really wished I could sleep on my side. When I needed to get up in the night to use the bathroom, I had to unplug the power cord and go on batteries until I returned to bed. Then I would plug back in and be able to return to sleep…it was a process.

 This is what the controller looks like. The white line is the drive line that goes in through your side and carries power to the pump inside your body. The two black cords are used to connect to either external power or to the supplied battery packs.

This is what the controller looks like. The white line is the drive line that goes in through your side and carries power to the pump inside your body. The two black cords are used to connect to either external power or to the supplied battery packs.

Normally, this worked without a hitch until that night about 3 am (of course) I had a problem plugging back in my power cord as it would not go in! In my somewhat panicked state, I must have tried too hard and the receiver plug was bent. This meant that I was stuck on battery only, which of course only lasts 5-6 hours each. So while not an immediate threat, I still had a problem on my hands. As I had been trained, I knew how to swap out my broken controller with a backup that had been provided for just such circumstances, however rare this situation was. Hey, I had so many other challenges, why not one more! So, with help from my wife, we switched out controllers and by doing so it would mean my pump would temporarily stop until the new controller kicked in. That was the scary part as I felt the pump stop briefly and immediately noticed how much I needed that pump! It was a quick transition thankfully and I was back up an running and all the power cords worked. The night was not over as we then headed directly in to Mayo to get a new backup controller and have everything checked out. I did get reprimanded for not calling in right away, but they were impressed that we handled it so well.

So now it was all about getting stronger and time for cardiac rehab! My doctors told me that the best thing I can do prior to transplant was to build strength. The stronger you are going in, the better you will recover on the other side is what they said - and they were so right! I went to rehab 3 days a week for an hour and did my workouts including treadmill, stationary bike, an arm pedal machine and basic (light) strength exercises. I would arrive at the Mayo facility and put on a heart monitor prior to my session. The nurses and trained staff would monitor blood pressures and all vitals before, during and after exercising. I felt safe there and it really helped build my confidence that I could actually do it - even with my LVAD. I can’t say enough how cardiac rehab made a difference for me and I know I would not be where I am today without it.

    Cardiac Rehab...not the biggest facility, but just what I needed and everyone there was so amazing!

 

Cardiac Rehab...not the biggest facility, but just what I needed and everyone there was so amazing!

I was feeling pretty good, totally focused on my routine and was just starting to think about what life might be with after having a transplant. Mayo has an amazing support group for heart patients where people gather weekly to discuss what they are going through both before and after transplantation. This gave me the opportunity to see and hear first hand what it was like to go through the process and how great people looked after having a transplant. Everyone was so open and it has helped me tremendously through my journey and even today as I continue to attend as often as I can!

Then, on the afternoon of October 22, the call came from Mayo. I will never forget this when my coordinator asked me “so, what are you doing tonight?” I said “I don’t know, what am I doing tonight?” She said, “well, why don’t you come in as we have a heart for you!” All I can say is that it was like an emotional blender where all of the feelings you can imagine where put in and the blender turned on high! I was excited, scared, and essentially freaking out all at once. I was told to safely make my way into the hospital to check in and wait for further instructions then. As I am writing this well after my transplant with time to reflect, I have to say that all of this is bittersweet knowing the selfless sacrifice that my donor and donor family made giving me the chance for a future life! 

We proceeded to the hospital right away and was instructed that I would need to stay the night before the procedure that would likely happen the next day. There are many factors that go into the timing and especially the fact that thanks to the generosity, love and courage of my donor several lives would likely be saved and improved. This coordination is critical and I simply followed instructions on my side and prayed for all. Needless to say, I did not sleep much that night, but knew that I was in good hands. If I had made it this far, I was certainly not going to give up now!

October 23, 2014 - I went into prep for surgery about 10am and was sedated prior to leaving the prep area. I gave my wife and kids hugs and kisses, told them how much I loved them all and that I would see them again soon!  That was about the last thing I remember and my procedure started about 1pm.  My wife tells me that I was brought back to ICU by 8pm that evening and that everything went perfectly and I was living with my new heart! I remained under until about midnight when I started to come to and motioned to have my ventilator tube removed. I don’t really remember much in those initial stages and apparently the tube was removed about 3am.

I continued to wake up and then the elation of being able to breathe and feel the power of the amazing gift inside me beating so soundly! It is impossible to describe in words, but I felt alive again and it is the most amazing blessing I could ever receive! Then to see my wife and kids and family was beyond incredible and we all cried and cried. My doctors at Mayo came to see me and reassured me that everything went according to plan and that I had a beautiful new heart!

Stay tuned for more as I plan to add more to my post-transplant story. I also encourage you to follow me on Twitter and check out My Blog for the latest updates in the mean time. I do want to state that I have since written a letter to my donor family to thank them for the amazing gift of life I have received and how I plan to care for and do good things with that gift! Not long ago, I also received a very touching and personal letter back from my donor family and could not have been more moved by the loving and caring nature of my donor and the family. I am in the process of reaching out to them again and look forward to further communication. I am humbled by this experience and continue my journey to be the best person I can be and to give back to others in need just as my donor did for me. I am actively involved as a volunteer with the Donor Network of Arizona and Donate Life Arizona to help register people as organ donors. This effort is very rewarding and I plan to continue sharing my story and helping other people anyway I can. You can also see my story at LiveOnAZ.org and Arizona residents can register to be an organ donor in my honor here. For those living outside Arizona, please register at the Donate Life America National Registry here.

Thank you to everyone who has supported my through this amazing journey and I look forward to more adventures ahead! I also welcome you to send me an email to mark@gatorheart.com if you have any questions.