Me!

 

Born in a small town on the south coast of England. I grew up in a good family, my mother and father and an older brother. Unfortunately at the age of 19 I lost ,y father to colon cancer. It blew my world a part but I always carried it deep in my heart. My mother was a brave woman and to this day, I couldn’t have had a better mum. In the 80’s and 90’s my passion was music, djing to large crowds and clubs. I loved it to the point that I think when I walked away from that dream I extinguished a goal that maybe was my destiny. 

Skipping a few years, in 1999 I met Tracey who we’d met on the internet, kind of the pioneers of online dating but without the chat room. After flying back and forth for the next 3 years we decided that I was going to stay in the States. I became a resident in 2003, we also got married in 2003 and 2006 I became a permanent resident. 2005 the year before we had our son. His middle name honored my dad John and he was my little mini me. The biggest issue with coming to America was what was I to do with work. I had worked in the car industry but offering dealerships products, now I was selling cars. To be honest unless I believe in a product then I find it had to sell. I sold MINI, which an Englishman sell an English car was pretty simple. Like Mickey selling Disney. I also sold high sold high end vehicles like Ferrari, Lamborghini and anything that made me drool and was never in my pay scale.

Once I am released to go back to work I would love to help people, be an organizer or learn more about life saving devices, transplants or even start a foundation. I would love to travel the country telling my story and being with a contemporary Christian throwing out there a party atmosphere of a concert like know one has ever seen before.. Goal with a new heart #1. Don’t forget to check out my Heaven page then you’ll understand what this all means to me.

 

 

My Story

In 2008 I had my first heart attack which started as what I thought was the influenza. It was documented as cardiomyopathy. I eventually had surgery having a stent in my 99% blocked artery. Over the next several years I carried on with a normal life. I had to have one more stent and while in hospital they performed a controlled heart attack which was extremely painful.

At the end of November 2012, I began to feel a lot of chest pressure which a number of hospitals disagreed with my communication of feeling like I was having a heart attack. Eventually, I was checked into a large hospital on the east side of Columbus Ohio and was given nitro which is given to a patient and taken but putting under one’s tongue. It opens up the arteries and allows the blood to flow to the heart again.

On December 7th 2012 I closed my eyes. I was being pumped with so much medicine that it was hard to keep my eyes open. The medicine was there to take the pain away from my chest. A pain that I had never felt before. It wasn’t really a pain, but more a feeling of death. I remember waiting for the squad to arrive, not wanting to die, but knowing that this could very well be it. I’d already told Tracey I loved her and to tell Joshua I loved him to when I called to tell my wife that I thought that this was it. The women waiting by me, kept me thinking about the sound of the sirens from the ambulance rather than giving up. I think their adrenaline was pumping just as fast as mine.

The ambulance arrived I couldn’t really speak, I kept gasping and asking the driver to get me there. Arriving at the hospital was a silent loud noise that was so muffled that I really couldn’t decipher where I was. Then it came, the tiredness and exhausting breaths that I couldn’t control anymore on my own.

So, closing my eyes was it, a feeling of sorrow, goodbyes and tears in my eyes.

While I drifted, I was taken to the east side Hospital where I died in the emergency room for a minimum of 5 minutes. My wife and family heard code blue in the waiting area and suddenly a doctor from know where announced that I had died ** but they managed to save me. I kept overnight on life saving medications and a ventilator. Then December the 8th I was transported to Cleveland Clinic where there was a very high possibility that I would not leave there alive because of the severity of my illness.
I awoke to find myself lying in a bed in Cleveland clinic, with my wife, son and mother who was supposed to be in England! I wrote down on paper,” where is the vessel?”. **

On the 31st of December my lungs began filling with fluid and my heart wasn’t strong enough to move the fluid so my body began to shut down.

I began to die but I wasn’t done yet, the doctors told my wife that night that the chances of me making to the 1st of January were very doubtful. But I made if and carried on my fight. The countdown was on, as it was only a week to go until my proposed LVAD implant surgery. In the meantime, my blood pressure dropped to where I should have passed out and not aware of anything. I taken back to critical ICU and prepped for my second placement of an ECMO machine.

Never in my life have I ever raised my voice to pray, I never really prayed before but this was a plea for my life**.

On the 7th of January it was time for my LVAD to be surgically implanted, this required my chest to be opened and a pump, called a Left Ventricular Assist Device to be stitched in my heart. The pump was only able to function by two batteries and a computer that regulated the speed. I was to wear this and have this implanted until I either died or I received a heart transplant.

The surgery was successful and it was all about rehabilitation.

On the 28th of January I was released to spend a week in the hospital accommodations so I could make sure I was ready to go home and live a whole new life.

February 8th 2013 myself, my wife and son finally returned home from Cleveland and celebrated Christmas. Because of the medications, dressing changes and new life changes in my life I would be having appointments every month at Cleveland clinic. July 26th 2013 after many tests I was finally told by my doctor that I was now on the transplant list. But this is how my life changed because although a transplant would have made life easier and been able to get back on track, this was not to be. Two weeks after the initial call about be put on the list, I got a call from my cardiologist explaining that there was a female patient that would die if she doesn’t get the next heart. What would you do? If it means you have to wait or maybe you won’t get another change. I couldn’t allow this woman to not have the chance to continue her life, so I told my doctor to go ahead and I’ll take a step.

For the next couple of years, my life changed. I began to come out of myself, talk about inspiring others, educating people into knowing more about becoming a transplant donor. I was created this website and many social media sites. I was interviewed by tv stations about a number of issues and was featured by a national blogger about how a man can be part of a 5K with no pulse.
In 2015/2016 I went to Cleveland clinic for one of my routine but when getting there was told my health insurance wasn’t valid with them anymore. So, after months of negotiations and being off the transplant list without even knowing it I made up my mind. I proceeded to signed up with OSU Richard Ross Heart Hospital in Columbus Ohio.

September of 2016 I was brought into the hospital for a routine check on my liver because of my numbers weren’t looking good. While I was in the hospital the alarm that alerts me of a fault in my LVAD began to sound.

3 Thoratec specialists flew in from Cleveland and Chicago to fix the fault. It was thought that the external wires had had broken through everyday use, as I tried to live as normal a life as possible.

After the specialists left believing that they had fixed the problem, the alarm went off again and I felt the pump stitched to my heart stop. The feeling wasn’t the nicest but it didn’t stop long enough to actually knock me out. So from that point and after being told the next day by the leading surgeon, I was not leaving the hospital until I was given a new heart.

This became boring and frustrating because I was not allowed to leave the facility in case a call came in for a new heart. This next chapter is to most people the worst thing ever but it was actually a blessing.

So, I felt a pain in my side and with examination and a scan, it was found that I had kidney cancer. It was a shock and took me off the transplant list but after having my biopsy and getting the results as positive, think about this. If Id had a transplant and with all the rejection medication, the cancer would have grown and fed off of it and I would have only survived a year. So, it was a blessing to find it!

After the biopsy I had to have my LVAD replaced because obviously no transplant until I was cleared which by the book was supposed to be between 2-5 years. Thankfully the tumor was encapsulated and was taken out successfully July of 2017 with a 1% chance of cancer ever coming back, another blessing.

Going back to the Christmas 2016 my LVAD replacement was tough. I suffered ICU psychosis, kidney failure and many other complications. Dialysis was depressing, to think that it could mean another transplant in the making. It took nearly 3 months to finally be discharged but then I had to rehabilitate at home by even having to learn to walk again for the second time in 3 years. End of the summer 2017 I had the tumor removed from my kidney which meant that from then, I had to be my own advocate to convince the transplant board that because of the 1% chance of a return but because the medical journal says 2 to 5 years it was up to me and me alone to get myself back on the list.

2018 rolled around and it was just another year, occasionally with hiccups, short hospital stays and precautionary measures. The end of June 2017 someone offered my family a trip to Destin Florida, so we took the offer. Unfortunately, the week before we were scheduled to leave, I had a checkup at the transplant clinic to find out that after scan and some tests, there was a clot in my pump. The first thing someone with an LVAD thinks when they mention a clot is death.
So, I spent the week in Florida which was tough knowing that there was a clot in my pump and at any time could have dislodged and killed me. July 20th, I returned to OSU to get the check up and see if the clot was still safe. It had moved and was detected after having it scanned. 7 days later after being told not to leave OSU I was entering a whole new journey of having a new heart.

The morning of the 26th of July 2018 I had a visit from the doctors and it just so happened that a representative from Lifeline of Ohio happened to walk in after the doctors. My cardiologist told me it was D Day. The day I get my heart. The heart was to arrive that evening and by tomorrow I would be out of surgery with a new beating heart.

Once my wife came in with my son it was a day of celebration but for me it was just a quiet calm time. The hours counted down and finally I gave my family a hug and I was wheeled away in my bed.

The heart was supposed to arrive at 10pm but it didn’t happen until around 7am on the 27th of July 2018.

I suffered terrible dreams that were so surreal that I still remember them to this day.

For the next few weeks everything was okay until the realization that I needed a repair to my tricuspid valve. Only 90% of blood was being pumped through and 10% was being sucked back making it hard to breathe. So, this was repaired after 4 weeks from transplant.

Because of the complications from my LVAD my kidneys have been permanently damaged and I now have stage 3 chronic kidney disease.

It took about 3 months to finally leave the hospital and nearly a year to the day of the transplant to finally start feeling normal. From October 2018 to July 2019 I’d probably been in and out of hospital another 5 times.

For now I get to live my life again thanks to my hero, my donor.

 

December 31 2012 my wife was told I wouldn’t survive.

  • 2013 January lvad implant and ECD
  • August 2016 lvad gone wrong
  • October 2016 kidney cancer. Dialysis
  • Found by brain scan that I’d had a stroke
  • December 2016 kidney biopsy
  • January 2017 new lvad, seizure
  • August 2016 kidney cancer removal
  • August 2017 relisted on transplant list
  • July August 2018 heart transplant and tricuspid valve repair
  • Kidney Dialysis
  • October 2018 to present. Rehabilitation
  • Psychologist. Stage 3 chronic kidney disease
  • Neuropathy in my right leg from the Ecmomachine
  • Brain damage from the lack of oxygen when I first colla[sed and secondly when I was being paddled. Thirdly when I wore the lvad for 6 years as the blood cells were being destroyed before the new ones were ready to be replacements.

 

 

 

Implant of a Left Ventricular Assist Device

Open heart surgery. The transplant of an old heart with a new one.