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In the final part of Steve Suto’s heart transplant saga, he shares his feelings about living with a new heart and how he is trying to be worthy of his donor’s gift. Share his new reality and join me in experiencing the inspiration it offers even for people like me who are likely to never have to face what he did. If you missed the rest of the story, here are the links to part 1 Reflections of a Heart Transplant Survivor, part 2 How to Qualify for a Heart Transplant, and part 3 Making the Wait for a Donor Heart Bearable.

Waking Up With a New Heart

I want to chronicle a hopefully finite time within “the course of human events” when transplants started during my lifetime and when someone can take a patient’s DNA and grow a transplant organ. This new organ will adequately replace the failed organ and not be rejected. Until there is no need for organ donation, transplant patients will be dependent on the humanity of organ donors and the amazing skill of transplant surgeons.

At the end of part three, I was sedated on the operating table and the transplant team at Strong Memorial in Rochester, NY was in the process of transplanting its 168th heart. When I knew I was finally going to have my transplant operation, I had total confidence in my transplant team.

My thoughts about transplants and how transplants have been portrayed during my life have crystallized into this confidence. Up to my being a candidate for a transplant, most of what I thought about transplants came from fuzzy memories of TV dramas and newspaper stories. Organ rejection was the theme of most of these dramas. I remember more than one of those stories featured people having no chance to survive without reconciling with a long lost identical twin who might donate a kidney. I remember Dr. Christian Bernard’s organ transplant team’s attempt that ended in organ rejection and Barney Clark’s artificial heart.

These developments were front-page news. That was cutting edge. (pun intended) Now transplants are still complex team efforts but they are common. The most progress has been made regarding the post-op issues of infection and organ rejection.

Tests, Tests, and More Tests

With my new heart, I was regularly tested for organ rejection and my blood was monitored for levels of meds that were adjusted as needed. I believe that monitoring and making adjustments to my individual reactions to my post-op medications takes skills equal to and equally important as anyone on the operating team.

The efficient transplant operation team took less time for my operation than the average heart transplant. During my heart transplant operation, I spent less time on the operating table than I spent on the table during either of my hip replacement operations.

Rejection is an ever-present concern for every new day in my life, but rejection is not common with people who take their anti-rejection meds as prescribed every day. Now my doctors need to deal with me as an individual and prescribe a level of anti-rejection meds that allow me to accept a foreign organ. I also need to be able to have enough natural immunity to fight off life’s other infections like the flu.

It’s funny how soon you can forget your last dream. I don’t remember dreaming during any of the times when I was sedated for an operation. A dream about a future time when not having the uncertain wait for a donor organ became a reality. It’s probably as good as any dream I forgot.

Pestering the Nurse-Heros

I woke up in the ICU about ten hours after the transplant operation. Now I’m officially in my “Brave New World.” My surgeon had done over 150 of these transplants and sometimes they leave the chest open. In my case, they chose to immediately close me up. I was sedated as necessary but the effects of my body taking to this new heart like a duck takes to water overcame a lot of this. When the fog in my head lifted enough I was ready to walk and I even surprised my wife Carol with a phone call after the ICU nurse prepared her by saying the call was all good news.

Normally nurses in the ICU have stationery sleepy patients and they don’t have to deal with patients ready to walk around or constantly pestering them for ice chips or drinks. If it was up to the ICU nurses I would have been sent back to the transplant ward immediately but my doctor cautiously had me stay there and upset the normal routine for another day. Within 36 hours of waking up in the ICU, I walked the 200 yards back to the transplant section of the floor. I think I was the first one over 60 who walked this distance. I was happy to hear my unofficial record was later broken by another transplant patient.

Back in the heart transplant ward, I was recovering in a private room displacing my friend Fred who preferred a private room when there was one available. I don’t think he minded picking up and temporarily moving to a semi-private room under the circumstances.

Time for the Grateful Dead Reference

Now Carol was given the task of preparing our home for my upcoming isolation. She had a little over a week to have the house cleaned and free of mold and other hazards. Soon I would be at a point where I was statistically safer at home and away from a hospital environment.

Driving home we listened to Sirius radio’s Grateful Dead Chanel. Somebody was reading my mind when I had a notion that I wanted some kind of divine sign. I found it when we were turning onto my street and the radio started playing the Dead singing “Truckin, I’m a-going home, Woah Woah baby back where I belong. Back home, sit down and patch my bones. Then get back truckin on.” Can’t make that one up. It happened. Johnny Cash once said that the best part of any long journey was the last mile going home.

For the next four weeks, I was tested for rejection using heart biopsy samples. Then the next four tests came two weeks apart. The next four came a month apart. Today there are blood tests available that are as reliable as those biopsies. I’m now taking this blood test twice a year.

Ahead of the Mask Game

The first six months after the operation I had to wear a mask in public or when I had visitors in my home. Alternately, when my visitors wore masks I didn’t need one. That time came and went and now ironically, I have enough hand sanitizer and masks left over to get me through CoVid.

So far so good. Today they have greatly reduced my intake quantities of anti-rejection meds and I had enough resistance to survive the flu bug I picked up on the 2019 Outlaw Country Cruise cruise ship. This bug managed to slip by the flu shot I had the summer before.

As I convalesced from the transplant I had to deal with the notion in my mind that I was now destined to be an instrument in divine intervention. I thought I was more than lucky and I was going through something extra special, and by some providence that I was spared to accomplish something of an extra special purpose that will be revealed in time.

Fortunately, I’m dealing with enough issues while recovering without dealing with being delusional. The idea of being spared for a divine purpose is used to describe a saint. Keeping it real, no way am I going to try to set out to be one of those. I’m still just an individual who has in the past tried hard and I even done reasonably well. Am I now expected to be more?

I’m dealing with my feelings that there has to be a way I can repay this whole thing. How can I come up with a scheme I can pull off as an appropriate reciprocating gesture. Finally, I face the reality that I can’t. So I need to stop obsessing about this debt.

There Is no Payback When It Comes to Transplants

By thinking there’s a need to pay somebody back in full, I’m changing the rules of the game. The deal was I should go back to my life. This notion that I owe something more was not the original transaction between me, my donor, and my medical team. Going back to my life was worthy enough. The only thing I can pledge to do is to try to grow and become a better version of myself.

I believe that because a heart is donated many of those characteristic synonyms for the expression “heart” like courage, persistence, loyalty, guts, and love are built into a donated heart because this particular heart is a donation without conditions. The vetting continues when a transplant hospital inspects the heart that the United Network of Organ Sharing (UNOS) found for you.

I believe that history is not just a listing of dates and events. History is my opinion the prevailing consciousness of people that dictate events. Examples include The Dark Ages, The Renaissance, The Age of Exploration, Imperialism, The Age of Reason, The American and French Revolutions, The industrial Revolution, The Space Race, and the Digital Age. These were all driven by new attitudes that spurred new science. Also, history is written from the perspective of the survivors and the winners. I don’t want my story told by an archeologist discovering and assembling clues that are fossilized.

Science’s trial and error and the experimentation throughout medical history have given us the transplant era in human history. Science might soon end this era. When organ donation is not necessary, it will end so much heartache but we will be missing the humanity of a gift without conditions. I pray humanity will come up with another worthy outlet for this expression of humanity when organ donation will not be necessary.

The Bonus Round and the Transplant Games

I’m now living in the bonus round with this new persistently beating heart. I lived long enough to be there for Carol when she had emergency life-saving procedures. She was always there for me. I lived long enough to meet more of my heroes who lived up to expectations. I lived to be on this planet when I could witness events and repeatedly say I would not rather be anywhere on this planet than right here and right now.

Examples of these times and places were two years on the Outlaw Country Cruises. Also, I competed in the NYS Senior Track & Field Games, the Florida Senior Games, and The US Transplant Games in Salt Lake City. The US Transplant Games has two competing divisions, donors and recipients. There are competitions that range from trivia, darts, poker, golf, ballroom dancing, tennis, swimming, track & field, and just about anyone is capable of finding their level of competition celebrating what they are capable of doing. There was even one organ recipient who set an age-group world record for the International Masters Track & Field age-group competition.

At the transplant games in Salt Lake City 2019, we set a Guinness record for the world’s largest gathering of Transplant Recipients. In the future with the danger of CoVid behind us, I hope to live to break that record. At these games, I took home two silver medals in throwing events for my age group and I feel vindicated that I only lost to a former world transplant champion. I hope to someday qualify to compete in the World Transplant Games.

Before my transplant, I was pretty good in track & field and I was captain of my college track team. In my senior year, I qualified for the Division III National Championship meet and got thrashed by three athletes who would become Olympians. After I graduated I competed in masters track and I was more than once a gold medalist in my age group at the USA TAC Indoor Pentathlon Championships. Two ruptured Achilles tendons in one year ended that career.

After I had both hips replaced I missed being around Track & Field athletes so I made an attempt to compete in age group throwing events. A little more willpower might allow me to lose enough weight to try high jumping again. The three medals I won at the NYS Senior Games in 2017 were mounted on a plaque and given to the nurses at the Strong Heart Transplant Unit with the inscription “The nurses told me their wish was that I get back to my life. These medals prove to them that I did just that.” I did not sign the plaque because it was about the nurses, not myself. This was their trophy. I hope it is there for their inspiration when they encounter the inevitable setbacks in their lives.

The Donate Life Booth at the New York State Fair

I neglected to mention how Carol and I volunteer to work at the Donate Life booth at the Great New York State Fair in Syracuse. Our goal is to educate fairgoers and sign up anyone interested as a registered organ donor. For the record, New York State’s Organ Donor List is more inclusive than the Department of Motor Vehicle’s. Please go to one to sign up if you haven’t already.

This transplant process allowed my body to adapt and heal in so many ways. Can anyone practicing medicine do much more than put your body in a place where you can heal? Give credit where credit is due. Nurses come back every day and provide care and comfort to patients no matter what the result. Don’t confuse doing what you need to do to survive with real heroics. Additionally, I include Donors and their families with real heroes.

To everyone out there thank you for wearing a mask during the CoVid crisis. Every transplant recipient will be taking anti-rejection meds for the rest of their lives and exposing themselves to the world as immunologically compromised.

To everyone who has stayed with my story for whatever reason, I hope I have given you something interesting to read. I might have answered your questions about living through the transplant process. I hope I did not muddy the waters. Please remember that I’m alive today because of humanity. There are so many other stories like mine out there too. Every single survivor of a transplant gives testimony to our humanity.

There is no existing product on the market you can just buy and sell that can replace humanity. I know nothing about my donor pertaining to issues that divide us. I hope that my audience embraces the spirit of “live and let live” that this world needs today more than ever. If you agree, please fulfill this part of yourself and register as an organ donor.

Thanks again to Dr.Doug Green who I will give credit to spurring me to broaden my horizons and complete this project. Now I have much more confidence in writing prose so I’m ready to take on haiku that I will self publish at the next Chinese sit-down restaurant restroom the Governor allows to open. Here goes.
Here I sit forlorn
My last pay toilet yen spent
I only break wind
©2020 Steve Suto

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Making the Wait for a Donor Heart Bearable by Steve Suto tells the story of waiting six months in the hospital for a heart transplant. He talks about how support from staff, family, friends, and fellow transplant candidates helped him stay strong and make it to the big day. If you have suffered setbacks you will appreciate this even if you are not a transplant candidate. Here are the links to part 1 Reflections of a Heart Transplant Survivor and part 2 How to Qualify for a Heart Transplant.

Making Your Grateful List and Checking It Twice

Here is a checklist of what I was grateful for when I started my wait in the hospital for my donor heart. If you or a loved one are waiting I hope your list is at least this long.

First: I had a strong support group. (Thanks for your part Dr. Doug.)
Second: I had great insurance.
Third: I had the best hospital, or at least I thought it was the best.
Fourth: My wife Carol had a local bed that was actually cheaper than commuting 90 miles one way and paying for tolls and parking.
Fifth: I have faith in the United Network of Organ Sharing (UNOS). Nationally, UNOS prioritizes and objectively allocates donated organs by need and wait time.
Sixth: I’m sociable and I would try to encourage and support the others like me who were waiting for a donor.
Seventh: Carol kept her infectious sense of humor and knew where it was needed.

In my life, I’m sure I’ve spent over eight months in different hospitals for various procedures; which includes the six and a half months I waited for and my subsequent recovery from my heart transplant. Before this I had two hip replacements, with one hip restructure follow up, arthroscopic knee and elbow surgery, reattachment of an Achilles tendon, hernia surgery, and two pacemakers installed and removed. I also had various overnight and day procedures, heart tests, and an overnight observation from a reaction to an allergy shot. Also, after recovering in hospitals, I spent even more recovery time in nursing homes.

Room Service

My best advice from all of this experience is that there is no greater luxury nor substitute for a private hospital room. I also learned that nurses are in the nursing profession for the right reasons. In the case of the University of Rochester (U of R), their nursing staff had a number of people who chose nursing after careers as doctors, news editors, police officers, shop foremen, nurse assistants, and more.

The most profound thing any nurse told me was that their job was to help me to get my life back. Additionally, they are giving a gift with no other conditions except that you return to the life you led. This attitude has done more than I can say when it comes to any survivor’s guilt when you overthink the reality that you know someone must die for you to live on. Going on with your own life fulfills your part in this deal.

If you are thinking about becoming an organ donor (Visit DMY.org to sign up.) I can not overemphasize that you need to make your wishes known to your family. Even though you have made known your intention of being an organ donor, your family can still object and override your intentions. Please make it clear to your family and your doctors you want to be an organ donor. In my previous references to my gratitude for donors, I also expressed my gratitude to the donor families. I hope that I am doing this one more time here.

After waiting in the hospital for over a month I started to figure some things out. We had options of private and double-occupancy rooms. If you had a private room for your wait, you could lose it if another heart patient had a greater need for the room. The term semi-private is a misnomer when your roommate is waiting for or recovering from an LVad (Left Ventricle Assist Device) because you are on such different schedules and treatments and you will constantly be disturbing each other.

After I had about a dozen roommates getting LVADs I started to forget names. I made an agreement with another patient who was also waiting for his donor that we would be roommates until one of us had a new heart. That way our treatments and schedules were not conflicting or disturbing each other.

Being social, one of the first questions your fellow patient’s ask each other is their blood type. Whether a donor’s heart is acceptable to you depends on your blood type. Positive or negative’s not a factor. Type O blood can only receive type O organs but everyone else can accept a type O organ. A accepts A and O, B accepts B and O, and AB accepts any A, B, AB, or O blood types. Therefore, type O patients generally have longer waits.

The Pole People

Those of us who were waiting for transplants were known as “The Pole People”. We were mobile, although restricted to the transplant floor area. We needed to be constantly monitored by various machines, and we needed to have our medication intravenous injection pumps hooked up and mounted on poles with wheels. Everyone had their permanent and seasonal decorations for their poles. No matter how good I thought I was getting at moving with my pole, my big toe kept getting in the way when I tried to move fast.

If a nurse asks you if you need one of these machines on your pole not hooked up and you are not using it; do not fake pain when they disconnect the machine. One particular nurse was a former police officer and told me about a perfect crime where disappearing ink disappears at room temperature and most patients can’t tell if Do Not Resuscitate (DNR) is stenciled on their forehead in disappearing ink. I was scared straight. I’m assuming justifiable homicide is still on the books.

The transplant ward had a waiting room with a Macintosh computer, exercycle, and a treadmill. Someone lost the treadmill key but I knew a magnetic hook would work in its place so I walked every day on the treadmill and watched old TV programs on Youtube. I could walk a mile in less time than a Muppet Show episode took. I was also walking without having to push that *#@!pole. My hands could swing freely and my big toe could relax for a while. We also had the areas on the floor where we could move around in measured distances for putting in measured milage. Former marathoners like my friend Fred put in more miles than I did.

The computer introduced me to Youtube music videos. Youtube is the closest thing I know of to a time machine. When you get on Youtube, all of a sudden it’s two hours into the future. Through following my curiosities I found out that the closest thing to my record collection is covered pretty much by Outlaw Country. Getting back to the Grateful Dead, I followed the continuing efforts of their former singer Joan Osborne (2003 tour) and found her singing with The Funk Brothers, (Motown’s house band) on a revival of the temptation’s “What Becomes of The Broken Hearted.” I had now found my go-to emotional support song for my unsure future waiting for a donor.

Everyone Needs a Support Group

As a mutual support group, a core of six of us “A” candidates started planned nights where we would get together and watch movie DVDs or play board games. Fred, who had type O blood and knew he was in this for a long wait, acquired a large locking cabinet and stocked it with donated books for our floor’s patients and persuaded the local library outreach to give a library card to those of us who were waiting. Fred’s father was a minister and he and his wife were teachers. They even held book discussions and recommended so many great novels and stories of people who endured hardships and survived like “Unbroken” and “The Book Thief.” Fred became a heart transplant candidate after the side effects of his cancer treatment ruined his heart. Today he’s doing well and doing some limited running.

Carol, who was now a retired teacher, had a friend and co-teacher who helped start me on reading. This teacher might not know how great the gift of a book snowballed. I did not know I was going to learn to like reading as my newest passion. In the past, Carol helped me overcome my learning problems and I went from a C undergrad science-education student to an A-minus student in Accounting. In the past, I took and passed college courses without buying the books because I had problems reading them. Before this hospital wait, there is no way I would have predicted I would read over 50 books while waiting.

We had heart transplant survivors (who lived close enough to the hospital) who would stop by and help us with favors and emotional support. One of these guys was a former professional hockey player who brought a stethoscope when he met the family of his donor. I wasn’t surprised to see him on the Donate Life Float in The Tournament of Roses Parade. Another one of these good people told a story about how he told his wife that if he got his heart he would give his wife anything she wanted. He gave her a puppy. Carol heard this and said, “I want a pony with about 300 of them under the hood of my Mustang convertible.” Incidentally, I was good to my word. It will finally be paid for by this October.

The Dry Run and Bigger Setbacks

One of the disappointing emotional setbacks we all faced was called a dry run. This is when UNOS tells the hospital they found a match for a patient, the hospital sends a representative to inspect, stop, and restart the donor heart, and ultimately transport this donor heart back to the hospital. You are being prepped for the operation when the hospital representative is away vetting this donor organ. Any time during your prep, you might find out that this potential donor organ did not pass inspection. I was one of many who endured a dry run. A nurse told me not to despair as they will just find me a better heart.

On November 24th, 2013 another potential donor’s heart was located. A Nurse Practitioner told Carol she was returning on the hospital’s Lear Jet in two hours with this better heart. The Chinese born anesthesiologist knew the words to Pink Floyd’s “comfortably numb” as we sang together before I went to sleep. The nurses who took offense to my pole decorations, (the Pole Dancers I cut out of the Target underwear adds) had this pole cleaned off before I was out for the count.

I was luckier than so many of those who waited with me. Some of us had their ICD’s defib them with a painful shock keeping their hearts beating long enough to finally get their new heart. Some had to wait more than the six months I waited. Some were hooked up to a mechanical heart about the size of a shopping cart and some of these patients were never were matched to a donor. Some picked up infections that disqualified them so a donor organ went to someone else. Some waited and never were matched to a donor. I’m not equipped to handle this kind of heartache yet when I visit the transplant ward I see so many mutually happy and familiar faces still working there. Some of these faces were the faces of pallbearers in funeral processions of those who did not get their hearts or people who died of unforeseen complications post-op.

Life Isn’t Fair, But You Already Knew That

Before I started my wait you could have quoted me more than once when I said “if life was fair; I’d be shorter, poorer, and have had fewer opportunities for an education.” In bad times I have learned to count my blessings. Hospital food is never a profit center. The food service staff may exaggerate. Do not take their food quality, choices, or nutritional info seriously or personally. People do their best with the resources they have. Appreciate and enjoy the efforts of the good people who work hard in real restaurants. I offer a special thank you to the nurses who purchased refrigerators with their own money for each of the patients waiting for their donor organs. Leftovers from home trump hospital food every day except Tuesday, which every week featured a prime rib dinner. It was more of a bummer when you had a dry run on a Tuesday.

I offer one more special thank you to the nurse who went to Wegman’s and purchased my annual tradition of White Roses for Carol on our anniversary in October. The Florist sent the wrong flowers on a Friday and could not correct this until it was too late. This nurse wouldn’t take reimbursement nor take the wrong flowers home. Also, If you’re making Christmas decorations using cut out hand patterns on green paper to make pine leaves and branches, make time allowances for surgeons who will make several models of “their hands” before their final contributions to your artsy crafts projects.

The Psychologist will see through your BS when for Halloween you dress up in a bedsheet toga as John Belluci in “Animal House” and you tell him you’re dressed up as Hypocrites. Doctors will, however, let their sense of humor show upon occasions.

No Atheists in Foxholes or Transplant Wards

Finally, there is no place for atheism in my life. I wasn’t raised Catholic but thank You Saint Rita and Saint Maryann Cope. Thank you for grace, forgiveness, and redemption. Another who showed me support during my wait was NASCAR star driver and champion, Brad Koslowski, who sent me a signed poster. I worked at one time for a sponsor of his race car.

In my own way, I had support from my deceased father through his letters from WWII when he fought in the South Pacific. They told of his wait to get back to civilization. He described hardships and loneliness like not seeing an American woman for years. Dad considered it impolite if he sent a letter that was less than three pages. Next to him, I wasn’t going through anything close to his ordeal when he might face total defeat or victory away from friends and family. Today sending a Tweet or sending a text doesn’t appeal to my sense of decency after reading these thoughtful and sometimes funny, and always personal letters.

Next Saturday in my final installment, I pick up from being sedated on the operating table and take it home.

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