SURVIVOR STORY: Mike Ashworth

Name: Mike Ashworth Location: Warwick, RI Profession: Soccer coach; retired insurance broker Diagnosis: Heart failure / renal failure Transplanted: September 13, 2014 Time on Transplant List: 5 years

MIKE ASHWORTH: The Miracle Man

How I Feel Today (Feb ’16) I walk 2 miles a day on a treadmill and run errands for family and friends. I’m infinitely better than I was… extremely independent… and happy to still coach soccer.

Just A Little Shoulder Pain I have been athletically inclined my whole life—football, wrestling, weights, martial arts—and worked on a heavy construction crew. Why, do I mention this? Because I worked and played with body pain for a long time, most importantly shoulder pain. I had my right rotator cuff repaired in 1999.

A few years later, the pain was so bad I scheduled shoulder repair surgery for February 18, 2004. In the months preceding the surgery, I was busy with business and family obligations—my youngest daughter Kate was to look at 6 colleges in Florida including one offering her a soccer scholarship. My wife (Leslie), Kate and I visited 2 schools in Tampa, drove to Fort Lauderdale to visit 3 more, then back to St. Petersburg for the last. I trudged luggage around that entire week and drove the entire time. I was tired, but we attributed it to the driving and lifting.

As scheduled, on February 18, 2004, I went in for shoulder surgery. My orthopaedist, Vincent Yakavonis, MD, was informed by the anesthesiologist that I had an erratic heart beat. Looking into it further, we determined I had a heart attack a few months earlier on Christmas night 2013—experiencing major pain in my right shoulder that night. Dr. Yakavonis told me I’d actually experienced a major heart attack.

By noon that day I saw my cardiologist, Edward Keating, MD, for the first time. Based on my initial EKG he determined I had major damage to my left ventricle. He explained I’d need surgery quickly due to the damage and that he would try to find a heart surgeon to perform it. I was refused by the head of the heart program at Rhode Island Hospital (RIH), as my chances of surviving the surgery were poor. Thankfully, George Cooper, MD—the surgeon renowned for fixing “train wrecks”—agreed to do my surgery.

I had 2 cardiac MRIs and Dr. Couper sat with my wife and I to explain the results. We had to wait for surgical and hospital board permission as the procedure he was to attempt had never been done at RIH. I went in on Holy Thursday—April 8, 2014. My ejection fraction was 25%. The surgery entailed rebuilding my left ventricle. Dead heart muscle was cut away and the remains of my ventricle were sewn back together around a saline sleeve to create a new ventricle. A bovine patch was sewn around my heart to help with compression of the new ventricle. My surgery—estimated to take 4 hours—ended up taking 12. My blood pressure would not go above 40/20 for several hours afterward. I woke up Easter Sunday morning with Dr. Cooper at my bedside, who joked, “Hey, you look good for a guy who’s been dead for 3 days…”

The Long Road To Recovery… My recovery was longer than usual as I received massive doses of Amiodarone to make my heart contract. I was 8 weeks in recovery but made great strides, able to walk 1,000 feet upon my discharge June 9. I went to cardiac rehab at the beginning of July and then back to work in September. I was occasionally tired but was back doing what I loved to do. My ejection fraction was now 38%. Along the way, I started to take Synthroid (as Amiodarone kills your thyroid), Furosemide (because I had congestive heart failure), and had a defibrillator implanted (as I was prone to sudden cardiac death).

I had a pretty good run for the next 5 years. But, in February 2010, I could not walk. I was transported from my house in an ambulance and so began the next leg of my journey. An left ankle was swollen so doctors did an aspiration—but it was unclear. The next 4 1/2 months were anything but pleasant. Initial tests were indeterminate for gout. I had calcium build-ups on both elbows and still the swollen ankle. 12 days after I was admitted, I was told I had MRSA. I had 4 operations on the ankle, coded all 4 times, and considered myself fortunate to be alive. I was put on IV antibiotics, which did no good. In April 2010, my defibrillator was removed as the MRSA invaded my body. I was discharged the week of March 27 with a Life Vest (an external defibrillator) and still received my IV antibiotics—administered by my wife, who happens to be an RN.

On the night of Good Friday, April 2, the Life Vest activated. I had known something was wrong and had moved from our family room towards our bedroom. During the trip, it went off, and I sent the kitchen table flying across the room. My wife and son Tom woke up from the noise and found me on the floor. Tom tried to help me but got knocked across the kitchen by the shock.

I woke up, sat up, and argued with them—not wanting to go back to the hospital. …I lost. I was transported to Kent Hospital in critical condition and was kept there for a week to be stabilized, then was sent back to RIH. I spent another 7 weeks in the hospital before being discharged in the middle of July.

Entitled, “How Not to Treat a Patient,” my hospitalization was the round table topic of a large physician group.

In August I was informed that, due to the damage to my heart, I would need a transplant.

My ejection fraction was 18%.

…Just Got Longer I met Director of the Rhode Island Heart Failure Clinic Dan Levine, MD and Director of the Tufts Medical Center Heart Failure and Cardiac Transplantation Center David DeNofrio, MD. I was sent to Tufts MC for screening and so began what will be my lifelong involvement with its Cardiomyopathy Center.

I was still able to coach soccer but was run down from carrying the additional water weight from congestive heart failure (CHF). When the process started in 2004, I weighed 210 pounds, by 2010 I weighed 293 pounds. I was diuresed a number of times and usually had 25-30 pounds of water removed from my body. At one point I was taking 240 mg of Furosemide, 180 mecg of Potassium chloride and 400 mg of Amiodarone to combat my erratic heart beat. I soon learned a clinic appointment at Tufts MC was an overnight affair and never left home without an overnight bag.

In October 2012, I was run down and went to Tufts MC to get a tune-up. This became a common occurrence—every two months or so. Throw in an occasional gastric bleed and it was just plain tedious. In April 2013, again during Easter Week, I went on Milrinone to further help my heart. Which didn’t work well for me. I was told I would need an LVAD. Duc Pham, MD—at the time with Tufts MC—implanted my LVAD in June 2013. Again, surgery was not easy due to my reconstructed ventricle, the bovine patch and my overall health…. taking so many cardiac drugs wears on your kidneys and liver.

I found the LVAD restrictive. With it, you can exercise, but must keep its driveline stationary—which I was not prone to doing. In April 2014 I got an infection in my chest wall. Dr. Pham did the excision in my hospital room at Tufts MC. Admittedly, it was enthralling watching him make the incision while I was awake. I had many driveline infections due to my movement with the LVAD.

The Call On the morning of September 13, 2014, at 10:45 am, I was at breakfast with Leslie. We had just started to eat. My phone rang. I answered and Cara Rosetti, PA RC, told me there was a heart available. It was surreal.

“Can you be at Tufts MC in 2 hours? We have a heart for you.”

Leslie looked at me, “…What’s wrong now?”

“…They have a heart for me. …I have to make some calls.”

I called our daughter Kate—who by now has graduated with a second degree—a BSN. She offered to come to Tufts MC with us. Leslie and she were too nervous to drive. So I did.

We arrived at Tufts MC at 12:30 pm. My INR was over 3, which meant I would bleed excessively. I was started on Vitamin K to bring my level down and was anesthetized.

I woke up 6 weeks later.

As per usual, my surgery hadn’t gone as planned. My donor’s heart was too big for my chest, so my chest was left open for a week for the swelling to go down. The heart-lung machine blew out my left femoral artery, necessitating a second surgical team to stop the bleeding and save my leg.

Leslie and my children were in the foreground of the transplant suite when one doctor, Jim Nilson, MD, yelled out, “Hurry up with the leg, we’re losing the new heart!” At that point my family was taken out by a charge nurse who was upset they had heard, and seen, what transpired. My surgery went on for 12 hours. I was put in a medically induced coma and not expected to live.

Well, I did! Senior cardiothoracic surgeon Kenneth Warner, MD did yeoman’s work pulling me through. Dr. Nilson and Cara Rosetti were constantly with my family throughout the whole stay. I had a stroke when I woke up, had gout throughout my body, and could not raise my hands. 10 days later I was able to get out of bed via Hoyle lift. My legs would not support the weight of my body. (At this point I weighed 192 pounds). I had to relearn to walk. And talk. I didn’t have much damage to my speaking ability, but occasionally hesitated for a word. My left leg, due to the femoral bleed and nerve damage, is still numb most of the time.

“The Miracle Man” For every week you are recumbent, it takes a month to recover. I did a stint at a rehab facility and got an infection while there. I ended up back at Tufts MC and thanks to their occupational therapist Bethany Augustoni, MS, OTR/L, I can walk again. She and the nurses on the “Pratt 8” floor made it their mission for me to be able to walk out of the hospital. I was discharged December 20 with a walker. I returned home and—aside from mandatory biopsies and clinic visits—have managed to stay out of the hospital.

After my transplant my ejection fraction was 65%.

The team at Tufts MC calls me The Miracle Man.

Team HeartBrothers I am a HeartBrother now. I was one of the first patients who Pat Sullivan talked to when The HeartBrothers Foundation was forming. We, as survivors, bring a completely unique perspective and level of support to patients because we have all experienced CHF, LVAD, dtLVAD, and TRANSPLANTS ourselves.

We are unique. And we care.

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