Jeffrey T. Blackburn
Jeffrey T. “Jeff” Blackburn celebrated 30 years of being the longest liver transplant recipient out
of Boston, MA. The gift of that organ let Jeff fulfill a very adventurous and successful life as a
son, husband, father of four, grandfather of three, as well as with a large cadre of family members
and friends. He loved making things like cars, which he also raced. He created a great business as
the owner and operator of Blackburn Truck Bodies LLC that is well known and respected for excellent
custom work throughout New York state. He was also a very giving person. We leave this message in
memory of Jeff and hope more people can think a e
impact of organ donations for someone else to have a successful and generous life.
Heart and Kidney transplant
This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more.
Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site.
On June 21st of 2012, my wife Kathy and I were getting ready to go celebrate our 7th wedding anniversary in Las Vegas. “Lucky 7” we thought, and had made plans for a weeklong trip while my wife’s parents watched our 4- and 6-year-old boys. I was having a little blood in my stool, so the doctor wanted me to have a precautionary colonoscopy as there was no history of any kind in my family. Later that day, after I had recovered, we were going to start packing the boy’s stuff to make sure they had everything to stay for a week. They were just as excited to stay at their grandparents as we were being able to celebrate with just the two of us.
On June 21st of 2012, my life changed forever. The doctor found a cancerous tumor in my colon that was the size of a softball. It turned out to be stage 4 cancer that had metastasized to my liver and lymph nodes. I was 38 years old. There was no trip to Las Vegas, there was no sleepover for my sons. Instead, what came was years of fighting for my life.
I was in rather good health and pretty young, so the doctors decided to act very aggressively. Chemotherapy was started right away to shrink the tumor and stop the spread. That seemed to work very well and kept the cancer at bay so the surgeries could start. Surgery on my colon, surgeries on my liver, surgeries to put devices in, surgeries to take body parts. I lost track along the way, and honestly cannot remember what I have left anymore.
Since the chemotherapy was working, we connected with specialists from Sloan Kettering in New York City who wanted to try a new but highly effective procedure. Every 2 months we would make the 5-hour drive to and from Manhattan to get tests and chemo treatments. Frequently, I would be admitted to the hospital for one another procedure or another if they didn’t like what they saw on the CT or PET scans. Sometimes an overnight trip would turn into a 4 or 5 day stay with us scrambling to find childcare. We relied heavily on our amazing support system back home picking the boys up from day school, cooking them meals, taking them to and from all their activities. We tried to keep their childhood as normal and as busy as possible so there was less time to think about what I was going through.
This went on for a few years, and the cancer was staying contained with no new growths. We lived our lives two months at a time as we never knew if the next trip would land me in the hospital. We could never commit or make plans as we often had to cancel. Sometimes the chemo knocked me down for weeks and I couldn’t get out of bed. But I stayed positive, put my trust in the team of doctors both in New York City and in Syracuse, and tried to stay as active as possible
The day we dreaded came in October of 2017, when the doctors told us I couldn’t have chemotherapy anymore as my liver was not tolerating it. 5 years of chemo every other week had taken it’s toll, and the cancer was starting to fight back. My eyes and skin began to yellow from jaundice, and nausea and vomiting were a frequent occurrence. Desperate for answers, we looked to another experimental therapy that had shown great results called proton beam radiation. This was a 3 week treatment regimen that zeroed in on the cancerous cells to destroy them. This was only done in New Jersey and cost $10,000 out of pocket. Our friends and family believed in our fight so much, that we were able to raise the money and I started the procedure in December of that year. I was able to be home right before Christmas and celebrate with my family.
On Christmas Day, I was admitted to the hospital with fevers, chills, and vomiting. I stayed there for 2 weeks with the final diagnosis of liver failure. The proton beam therapy, while helping to destroy the cancerous cells, also damaged my liver irreversibly. There was nothing the doctors could do, except treat the symptoms and make me more comfortable. I would go to see my oncologist with the hope of a miracle that the bilirubin levels had somehow gone down and we could start fighting again, but the tests never had good news. I was losing weight, I was losing strength, and I was doing what I could to keep my life going.
In February of 2018, my oncologist in Syracuse asked me if I had ever thought of a liver transplant. Now, when I was diagnosed in 2012, we were told I would never be a candidate for a liver transplant. However, since so much time had passed and science was progressing, there was a study being done at the Cleveland Clinic with cancer patients and liver transplant. Our doctor made a few calls, and got us in for a consultation with the transplant team in Cleveland. Then began our bi-monthly trips to and from Cleveland. Every two weeks I had to have tests done to make sure I was still a candidate and that the cancer had not spread out of the liver. These trips were grueling, as my strength was at an all time low. But I kept holding on for the sake of my family.
At first, we were looking for a live donor for part of the liver. My wife was tested, my family was all tested, even strangers I had never met were reaching out over facebook asking how to get tested. Ultimately the doctors decided that I needed to have a whole liver. For the next few months, it was just waiting. This was by far the worst part of the whole journey, knowing that someone would have to lose their life in order to save mine. Knowing that if that didn’t happen in time, I could lose my life. It was a very dark place for me mentally, and I know it was also hard for my wife and kids.
On May 26th 2018 my life once again was changed forever. We were at a family gathering for Memorial Day surrounded by family and friends. We were also gathering to celebrate our sons’ 10th and 12th birthdays. We had just finished having some birthday cake when my cell phone rang and the caller ID said Cleveland Clinic. When I answered the phone, they told me that unfortunately a family had lost their 30-year old son to his fight with cystic fibrosis and they made the extraordinary choice to donate his healthy organs. We needed to get to Cleveland in 6 hours if we wanted a chance to be a recipient. Our family flew into action, everyone taking on different responsibilities as we dropped everything and left for Cleveland.
My wife and I sped across three states with flickers of hope. We knew there were still many hurdles to cross once we got to Cleveland. I had to have one last scan, and if it showed that the cancer had spread, the procedure was off. They had to be sure that the liver was a match for me, or the procedure was off. If they started the surgery and found something in my body that was not picked up on the scans, the procedure was off. Finally, all of the obstacles were cleared, and I was scheduled for surgery. The surgeon said there was a high probability of this not going well, as I was very sick and my body may not last the 14 hours surgery. Additionally, since I had underwent many previous surgeries there may be too much scar tissue to allow them to proceed. They would not know anything until they got me on the operating table and opened me up. It was the unspoken word that this was my last chance, and it was a slim one. Knowing all of this, I put all my fear behind me and signed the paperwork. I kissed my wife goodbye, told her I loved her, and they wheeled me off to the operating room.
I remember bits and pieces of the next few months. I remember waking up in the ICU not being able to speak with a tube down my throat. There were machines and tubes going everywhere seeming inserted on every accessible place on my body. I remember having to be taken back in for another emergency surgery as I was having internal bleeding. I floated in and out of consciousness for a couple of days until they were finally able to take the breathing tube out. I was finally able to leave the ICU and go to an inpatient room at the Cleveland Clinic.
The room I stayed in at the hospital was a floor dedicated to only transplant patients. They were phenomenal and took very good care of me. There were some setbacks along the way. I had a major seizure that caused me to have to have constant surveillance of my brain activity. My body was not responding to one of the drugs they had me on, so a different medication plane had to be made. Day by day I got a little bit stronger. Day by day hope started to come back. Day by day I could see that I may have a future.
I was in the hospital for a month, as they had to monitor me to make sure my body was not rejecting the liver. They had to help me build up my strength and learn to walk again. They had to teach me how to take the very strict regimen of medications I would be on for the rest of my life. When I was finally released, I had to stay in Cleveland for another month with daily check ins. I could not be on my own so my wife, sister, brother and mother all took turns staying with me in a hotel about 30 minutes away. They would drive me to and from appointments and keep my mind occupied and body healing. My sons were able to visit for Father’s Day, and then again on the 4th of July, which happened to be my birthday. As a family, we sat in lawn chairs in a field next to a county fair and watched the fireworks. I could still barely walk, but I remember thinking I was just about the luckiest man on Earth at that moment. I had my family next to me, I was celebrating my 44th birthday – one I never thought I would see – and I could actually begin to imagine a future.
June 21st 2021 marked the three year anniversary of my liver transplant. I have had to go back on chemo a few times as some small cells have shown up in my lungs and intestines. My medications are stable and I am back to work full time. My boys are now 13 and 15, and I am unbelievable grateful that I got to see them turn into young men. My wife is my rock and has been through everything right by my side. We are still living our lives 2 months at a time, but we are able to manage doctor visits here in Syracuse. We know that things can change in an instant. We are living in the present as it hard to look back and scary to look too far ahead.
We are forever grateful to our donor family and the unimaginable sacrifice they had to make in order to save my life. Their generosity not only affected me, but my entire family. My sons still have a father and my wife still has a husband. I am a son, a brother, a nephew, an uncle. I am a friend, a coworker, a teammate, a godfather, a neighbor. All of these lives have been touched by the selfless act of the donation of life and saying thank you is only the beginning. I joined the Finger Lakes Transplant team to help others learn about the options that are out there and spread the word about the importance of organ donation.
It has been four years since I had my transplant. It’s been four years since my dad graciously
donated his kidney to me. It’s been four years that I’ve been living this new life.
“The nephrologist said I should register for kidney donation and be put on the list”. This is what
I blurt out through tears and snot when my mom picks up on the other line. Completely in
denial but swollen and carrying 20 pounds of extra water weight my body retains, it is now
mostly in my legs and feet this time of day. The water retention has collaborated with gravity
and traveled from my face to my feet since I’ve been vertical all day at the office. I’m swollen
from steroids injections and slowly walking down 5th avenue as if both legs are in casts
because I can barely bend my knees. No one notices or stares, and this is when I am thankful
to be a ghost in a city of millions. I do not know but my mom takes action by sending out a
message to friends and family. And while I crawl into the shadows and hide myself from view,
she becomes my biggest advocate. Her knowledge in the medical field unknowingly develops
my knowledge for it and now becomes an integral part of my life, for the rest of my life. Family
from immediate to extended get their blood tested for matching and many go through the
rigorous medical testing for their safety and for mine. Each member going through testing
leaves Weill Cornell feeling fully supported, knowledgeable and safe within the donor care
First day and arriving early at the dialysis center, I’d rather be home or getting treatment at the
hospital. The sweet older gentlemen sitting next to me in the waiting room pulls up his sleeve
revealing his fistula and says his ‘first surgery was awful but the second one was successful’, I
nod understandingly but I distance myself from taking his story in. I do not want a fistula
despite what every dialysis staff has told me and will continue to tell me I need to do. Still, I am
thankful he has offered me the surgeons information from the second surgery if I need it. I get
weighed on a scale as others line up behind me. This white enclosed interior could have been
a psychiatric ward if it wasn’t for the casters on the aqua vinyl 80s style recliners that snake
around like airport seating. I am brought over to the middle of this room and I wonder if it is
intentional so that I don’t feel outcasted, but it does not help. I am a lab rat trying to avert my
eyes so I don’t make contact with the residents of the recliners behind, next to, and directly in
front of me that look just as sick and helplessly hopeful as I do. The aversion doesn’t help as
my eyes well up with tears. Luckily, the two attendants connecting me to the machine that
now keeps me alive, notice the the river flowing out of my eyes and run to get mobile privacy
curtains. Five hours later I walk home from the center with a migraine that makes my eyes
squint and the dread that I’ll be back there again in two days. Several months later with Dad
tested twice, he receives the call that he has passed and we set a date for surgery.
It’s the AM rush hour on the 6 train and I’m with mom and dad heading to Weill Cornell for
surgery. I am surprised to see a classmate from grade school I haven’t seen in years, across
the tracks, but I look away. I am in no mood to reconnect even though I am excited as if it
were the last day of classes and summer is in reach. Both dad and I are swept away to our
separate rooms for preparation after we sign in. The next several steps and medical staff visits
include the experts I have met leading up to this day as part of my transplant recipient team
and this continuous compassionate care brings me comfort. I think to myself, this is what
being VIP must feel like. On the table in the OR room with the anesthesia kicking in, I fall into a
It’s the day after surgery and my energy is back. There is pain at the site from surgery but my
scar is beautiful and I already feel physically and mentally stronger and healthier. The first meal
I crave is a parfait and I am not a huge yogurt fanatic. I wonder if it’s because it’s “the kidney
talking” as we now joke when there are things my dad does or says that I now do. The weeks
after surgery are some of my most memorable times. I watch one of the busiest cities across
the Hudson rush around as I sip my cold brew and snack on the lunch mom and I packed. I
am an observer with one job. Heal. The rush of traffic and sirens of lower Manhattan in the
distance sound like soothing white noise, the sun glistens on the water, it is peaceful and I am
It is a sunny comfortable day in May, one year after transplant, my “therapy” pup Biscuit, mom,
dad and I are at the panoramic summit of Giant Mountain, an Adirondack high peak. We came
here to celebrate a renewed life with this one peak in mind. Invigorated by the view, the
burning in our legs and blisters on our feet we unanimously say “why stop here”. Since then
we’ve climbed a total of 19 peaks and counting and I’ve discovered hiking a peak is very
closely linked to the concept of life with a chronic condition. There are a variety of ups, downs
and unexpected slaps in the face but it’s every step you make along the way that counts. The
size of the steps do not matter, only that you take them.
Thank you to the Weill Cornell team for your continuous care, compassion, collaboration and
drive to advancing kidney care.
DSatterlee, 2018 kidney recipient
My purpose in writing this piece is to facilitate awareness and persuade you to sign up as an organ donor. November 2020 will (God willing) mark my seventh year of continued life with a stranger’s donated heart. I know only that my donor was under 50 years old, bigger than me, and a two-hour LearJet flight from somewhere to Rochester, NY. I never wrote a thank you to my donor, as his heart was given to me with no conditions. I hope those who were in the family of any organ donor will accept my gratitude. I feel better thinking that I am alive because of some family’s humanity. There is no cause and effect yet I somehow have to reconcile the seemingly opposing thoughts that I am alive because of someone else’s tragedy mitigated by their humanity. These families allow today’s medicine to continue lives that would otherwise be cut short. Medicine is part science and part art. Every prominent religion endorses organ donation as an expression of charity. My religious upbringing teaches me that we are made in our creator’s image. I believe, however, that God would not go out of His way to look like me. My only other way to trust this truth is believing that our Creator’s “image" is exemplified creativity and is reflected by our diversity. Medicine has created organ transplants. I believe Jesus forgives plastic surgeons. By now you might have figured out that I’m taking advantage of the fact that someone gave me the chance to return to my life with no conditions; even though more than one of my employer’s 360 evaluations point out that I‘m some kind of wise-ass. Grateful and the "Grateful Dead” I registered as an organ donor after an appeal between songs by Phil Lesh of “The Grateful Dead” when he 4 thanked his donor for his extra time to keep playing music and he would be Grateful to sigh anyone’s donor card. This was in 2003 on a tour with Willy Nelson & Moe and featured Joan Osborne singing lead for the Dead. After Jerry Garcia’s death, Joan sang lead on songs that revived songs on hiatus traditionally sung by deceased bandmates Garcia and Pigpen McKernan. She gave more than these songs a second life for me. Dr. Doug Green & I trade music that we like back & forth but he is not like me, as I’m a self-described recovering DeadHead with no musical talent and Doug can actually play music. When I first saw a New York State organ donor license plate that said Donate Life, pass it on I thought wow. They left that door wide-open knowing people like me are out there and we like to goose Murphy’s law. Inspiration and Phil Lesh’s appeal turned into a DeadHead’s inside gesture versus an offsetting socially mitigating statement. My license plate reads Donate life, pass it on, 420 4U become an organ donor; or translated, donate life, pass it on, “High Time” for you to become an organ donor. 420 is code for International Cannabis Day. Legend says 420 evolved from the time of day two friends partook. This grew through their network of friends. Eventually, 420 was the time of day before any jam band concert fans got high. Thus my interpretation of "high time." Why keep this for jam band fans only. Your awareness of 420 Day shows the next level of acceptance of this custom. National Holiday!? This plate using 420 for “high time” would not be acceptable in California. New York won’t let you even swear in pig Latin on a plate but they missed this one. Even though I might spend more time every year in my Florida condo, I remain a New York resident. I’m proud that I had that NY license plate years before my health deteriorated and I needed a transplant. New Life, New Heart In my new life with a new heart, the greatest change I have made is to allow the effects of an artist to fully wash over me and engage all of the emotions I honestly feel. It’s no coincidence that so many traits like persistence, guts, love, and humanity have heart as a synonym. I am even more grateful that after my 5 transplant I was able to be there and reciprocate & support my wife, Carol when she went through a health ordeal that included life-saving emergency surgeries. Here's how a transplant candidate went from a rejected heart transplant candidate to a transplant patient who walked the 200 yards back to the hospital’s transplant ward from the ICU within 36 hours of waking up from successful transplant surgery. Most transplant recipients spend a week or more recovering in the ICU. Every day since at some random time I suddenly experience profound gratitude to my unknown donor and his family. I hope this continues every day I continue to live. To quote country outlaw Ray Wylie Hubbard, “any day when my gratitude exceeds my expectations I’m having a good day.” This sounds like something you learn in rehab. He once described a woman as “tougher than rehab”. He also, in turn, quotes his grandmother in his song <em>Conversation With the Devil</em> saying “some folks are saved because they see the light, others are saved because they feel the heat.” Incidentally, if I never got my transplant my tombstone would have read “It just doesn’t seem like Hell without You”. My friends & family who know me wouldn’t take offense. Thanks for reading and please sign up to become a donor and share this with your network. 6 How to Qualify for a Heart Transplant - Part 2 This is part two of a four-part story written by a good friend who had a successful heart transplant in 2013. Here you can learn about what it takes to become an "A" candidate who lives in a hospital so that there is no wait when a proper donor organ becomes available due to a tragic situation for the donor. The first part is available here: Reflections of a Heart Transplant Survivor. Unplanned Retirement I was sitting in a hospital bed in Syracuse when my cardiologist told me that as of today I’m retired. This was not planned. I wanted to work until I turned 62. I would then get into shape, lose weight, and enjoy an active retirement as a snowbird between Syracuse, NY in the summers, and at my condo on the Space 7 Coast in Florida during the winters. My cardiologist gave me another ending to my story. There would be no reconciling our two different versions of my future. I admit I never was really listening. Years ago he told me to stop drinking. “Drinking was no good for my heart.” I did not immediately believe his science. I chose to listen to the conventional wisdom of “everyone says” which believes that glass or two of wine every day was good for your heart. A heart has two systems. In system one, most heart patients have circulation obstructions that can be mitigated by lowering cholesterol and losing weight. Wine helps this too. It was too late when my doctor said my heart problems were from system two, the system that carries the signal throughout the heart and tells it when to beat. I had a pacemaker but the signal never made it through the damaged muscles in my heart carrying the instruction to beat and my heart was enlarged like a weak balloon. The ejection of blood was insufficient. New valves wouldn't help because the surrounding tissue was too worn. This condition aggravated by alcohol. The Hot Potato Express My local doctor was sending me to the University of Rochester's (U of R) Strong Memorial Hospital in Rochester, NY (about 90 miles away) to get an LVad or an artificial left side heart pump. He was also dropping my case and handed it off to a Cardiologist from the U of R after telling me my liver was failing. The “hot potato case express” ambulance took me between cities and hospitals. I needed an ambulance because I had a portable system injecting milrinone into my veins to boost my heart’s output. I was going to be on this med till my transplant and there is no oral substitute. When entering the heart transplant unit, it looked and sounded like a casting call for the original Star Trek and it was apparent that I was in the hands of world-class staff. After my tests, my new doctor informed me that I did not qualify for this LVad because the right side of my heart was too weak and additionally because of liver damage. (My former Cardiologist believed I was an alcoholic.) That meant 8 I could not enter their transplant program. I was advised to try another transplant hospital. I was sent home with my new portable life support system and a new inter-cardio defibrillator (ICD) enhanced pacemaker that was capable of administering a defibrillating shock. My wife Carol was taught how to refill my daily dose medicine injector system and change the batteries. I wanted to qualify for Rochester’s transplant program because their success rate was, by my reckoning, about 50% better than the national average. I concluded that because the U of R needed to keep their certifications and they had to meet the national averages; they only accepted less risky cases. They implied that other major transplant centers who do many times more transplants might accept cases the U of R would not. Becoming a "B" Candidate In order to qualify for the U of R transplant program, I had to correct the record. My heart could not support the LVad so a transplant was my only course of action. It was easy to quit drinking almost a year before these things developed to this point. I just decided to stop and I felt justified contesting this medical assessment of alcoholism. Fortunately, the liver specialist from the U of R in a different hospital in a different city took a biopsy of my liver and concluded that my liver damage was from a medication I was prescribed. After I agreed to accept counseling I was admitted to the transplant program as a "B" candidate. An "A" candidate was a candidate living in the hospital waiting for a donor through the United Network of Organ Sharing (UNOS). A "B" candidate was living at home and had to be no more than two hours away from the hospital if a local heart was available. Statistically, this was not likely as out of approx 160 transplants at this hospital they had only done three “B” candidate transplants. Unless a Donor is local, UNOS will be the one who prioritizes and decides which 9 candidate will receive an available organ for transplant. Rest assured that if you are a patient, your doctors do not know if you are an organ donor so be sure to let them know. My counselor had to convince me to convince myself that a disease is a condition that causes bodily damage and produces symptoms. After he “advised me” to attend AA meetings I could only admit to being “an alcoholic” because alcoholism is a disease. That factual diagnosis does not necessarily reflect on one's character. (I stopped attending AA after I got my heart.) Since my transplant, I haven’t had anything more than a taste of rare or excellent wine and I’ll let someone else give that condition a name. Alcohol will probably ruin my new heart so I’m not drinking. The Benefits and Downsides of Portable Life Support While I was waiting to enter the program as an “A” candidate; I visited our local Social Security office. I believe that because I showed up with my portable life support system injecting my meds; my case for SS disability was approved within days. Also, when I caught an infection, I was temporarily ineligible as a “B” candidate so Carol and I visited our Florida condo for the first time in over a year. 10 The benefit of bringing a portable life support system into SS was canceled by the hassle of getting a system with a liquid reservoir through airport security. They had me isolated to be cleared to board and we were almost late for our plane before they let us on. Incidentally, before CoVid I learned that wearing a face mask inspires an airport crowd to move over and allow you to pass unmolested. The U of R also required me to be approved by a psychologist for the transplant program. My cardiologist sensing my terror told me not to play any games and just be myself. That part of qualifying was covered with a passing evaluation in spite of my answering questions about experiments with drugs when I was much younger. I should have not mentioned that when I was in my teens LSD was actually legal. Sometimes having a doctor younger than you is a good thing. My cardiologist finally scheduled me for tests and admittance to an “A” candidate residence in the Hospital. I had everything I felt I might need for months of waiting in a hospital but my newest reason for rejection into the program was that some of my test numbers were too good. I attribute this to my daily exercising on my stationary bike. I guess their average candidates didn’t reflect the effects of exercise. Congratulations, You Can't Go Home The next time I was scheduled for an evaluation, Carol and I were not expecting admission so when they sprung on us that they weren’t letting me go home we had to call a friend to shut the crockpot off in our kitchen. All I had were the clothes on my back and now Carol had to put together everything I would need to live months in a hospital and carry it the long way up to the transplant ward. The time frame from my finding out I was retired to when I became an “A” candidate for a transplant was six months (Oct 2012 to May 2013). As it turned out, the U of R Strong Memorial Hospital would be my home until December 2013. I was fortunate to have the means and support to achieve qualifying for this 11 exceptional transplant program and in addition, I could correct the record on my tests and evaluations that would have otherwise disqualified me. Rejection from this program was not absolute. Persistence and faith were what I needed to prevail. 12 Making the Wait for a Donor Heart Bearable - Part 3 In this part Steve 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. 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. 13 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. 14 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 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. 15 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 16 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 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 17 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 18 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. 19 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. 20 Waking Up and Moving On After a Heart Transplant - Part 4 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. 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. 21 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 22 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 23 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 24 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. 25 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 26 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 (https://bit.ly/32UNubC) is more inclusive than than Department of Motor Vehicle’s (https://bit.ly/2PFMUIr). Please go to one to sign up if you haven't already. 27 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
Finally, when I had just about given up hope after waiting more than 10 months at Strong Memorial Hospital in Rochester to get a heart transplant, I received the gift of life. On April 16, 2014 I had my dying heart removed and a donor’s heart transplanted.
When I found out there might be a heart available that special day, I tried hard not to get my hopes up. I had seen a number of patients getting prepared for a transplant only to find out at the last minute it was not going to work out. Nevertheless, as my daughter, Joby, with her three children walked down the hall towards me just two minutes after I had heard about the potential heart, I cried as I told her about the real possibility of getting a heart within hours.
When I called my wife, Linda, she jokingly asked, “Did you get your heart yet?” I said, “Well, actually…” She dropped everything and was soon on her way from Trumansburg. Luckily, the transplant was a go and my family was able to get there in time to wish me well before I went down to surgery.
It felt like a miracle, like I was in a dream. The surgery was successful, and it’s been over five months since the surgery. I feel so very lucky and blessed to be home with my wife and looking out at my backyard. A miracle had happened. I had received the greatest gift I could ever have.
Super-Active and Then a Patient With a Serious Heart Ailment
During the 1990’s I ran five marathons, several half-marathons, extensive runs along the Finger Lakes Trail, 10K’s, and 5K’s. I completely enjoyed running. It made me feel free and healthy. One day I told my doctor that I had felt something like a butterfly and then felt very light headed and that this had happened several times. He referred me to a cardiologist to have it checked out.
During my first visit with the cardiologist, he informed me that I had serious cardiomyopathy causing congestive heart failure, and that we would be seeing a lot of each other. He was shocked to hear about my running, and said it was quite unusual for a person with a heart condition to be able to run that much.
The cardiologist said no more marathons, but if I felt good enough, a half-marathon was the limit. That was in 2001. He had me wear a halter monitor to monitor my heart rhythm. He saw that I had ventricular tachycardia, a potentially fatal rhythm. So I received an ICD, an implanted cardio defibrillator, that could monitor my heart’s rhythm and deliver a powerful shock if it detected the fatal rhythm. The ICD saved my life several times.
I did keep running with my buddies. We would run four to 10 miles regularly, and it always made me feel good.
Congestive Heart Failure Worsened and the Need for a Transplant
In 2012, my congestive heart failure got steadily worse and my symptoms became increasingly noticeable. My cardiologist referred me to Dr. Eugene Storozynski in Rochester. Dr. Storozynski, an Associate Professor in the Department of Medicine, Cardiology, concluded that I needed a heart transplant and referred me to Strong Memorial Hospital for a right heart catheterization.
This indicated I was indeed a candidate for either a left ventricular assist device ( LVAD) or a transplant and was admitted to the 7th floor cardiac unit on June 14, 2013. I did not leave until May 5, 2014.
At Strong, 7-34 (as it is fondly referred to) is where the patients in need of a transplant wait until a heart becomes available. After the shock of becoming an institutional resident, not able to be home with my wife, or playing with my grandchildren, I started to get to know the other members of the community I was now living in. The nurses were excellent and the doctors were highly skilled. But, I was bored and so were many of the other long-term patients.
I got the idea that we could have “Movie Night” with heart healthy snacks and gained permission to access a conference room with a computer, projector, and an outstanding sound system. Soon, “Game Night” was added to the weekly social calendar as well as puzzle challenges and trivia questions. We enjoyed the break from the monotony of waiting for a heart and praying that one would become available before it was too late.
In addition to breaking up the boredom and having something to look forward to each week, we all enjoyed the interaction with one another. As patients in different stages of a progressive disease, we had a chance to vent, share histories, and make important human connections.
A Small Patient Library Helped Pass the Time
By the fall of 2013, I began reaching out to the Rochester Public Library to investigate the possibility of borrowing a small rotating collection of books, videos, CD’s and audio books. The public library was very supportive. They sent a great selection of materials each six weeks in addition to any specific requests the patients might make.
When word got out that we were starting a small patient library, book donations starting pouring in. At one point I kind of got in trouble because there were more books than the small space we were allotted.
In many ways these projects were actually selfish. They gave me a sense of purpose, a semblance of control, and connection with the outside world. I’m grateful to the staff of 7-34 for giving me so much support in these endeavors. They seemed to realize that these “projects” of mine were critical to my sense of well-being.
Support From Heart Recipients, Family and the Community
Another great support were Bob and Gates, former heart recipients, who visited the unit often. They came in regularly to check on each of us and spent valuable time talking and encouraging all of us to hang in there and stay strong. These people were a tremendous help to me and my fellow patients.
Outside the hospital, front row, from left to right: Two of Fred’s grandchildren, Boden and Hatteras, who are sitting alongside Fred. Back row, from left, Joby, Fred’s daughter; Linda, his wife, and grandson Reuben. The picture was taken in the spring of 2014, a couple of weeks before Fred’s transplant on April 16, 2014.
The greatest support of all was my family. They visited regularly, sent cards, pictures, notes and gifts. My wife Linda brought me nourishing soups and food from home to break the monotony of the hospital diet. I would not have survived without her conscientious and continuous support.
My children, grandchildren, and extended family from Philadelphia and Syracuse all visited and sent care packages. As lonely as it sometimes got, I always knew that they hadn’t forgotten me.
I also felt a great deal of support from my community. This support came in the form of visits and calls but also from hundreds of colorful origami cranes that were folded by my grandchildren and their schoolmates. I even received a box of cranes from as far away as New Zealand. I felt like Sadako in the Japanese tale and was overwhelmed by the generosity and care that came from my community.
In addition, our family planned a special fundraiser. We will never be able to thank the many individuals businesses in Ithaca and Trumansburg that contributed to making the event a success.
The Months Dragged On. Then, Finally, a Possibility of a New Heart
In spite of all the support and positive energy, the waiting continued and the months dragged on.
I was getting sicker and sicker with each week and gradually getting more discouraged. I began to fear that I would never go home again to be with my wife and family; never walking free without tubes and an IV pole as my third leg.
I had almost given up completely until that day when the nurse practitioner poked her head into my room and said, “Could I speak with you? There’s a possibility that there may be a heart for you today.” I couldn’t believe it. A miracle was taking place. I was about to receive, from a total stranger, the most important gift of all, the gift of life.
I hope to have the chance someday to thank the donor’s family and express what that gift has meant to my loved ones and me. It is hard for me to express in words just how grateful I am to the nurses, doctors, donors, family, friends, community, fellow patients and heart recipients. Everyone, thank you. Thank you. Thank you
This is placeholder text. To change this content, double-click on the element and click Change Content. Want to view and manage all your collections? Click on the Content Manager button in the Add panel on the left. Here, you can make changes to your content, add new fields, create dynamic pages and more.
Your collection is already set up for you with fields and content. Add your own content or import it from a CSV file. Add fields for any type of content you want to display, such as rich text, images, and videos. Be sure to click Sync after making changes in a collection, so visitors can see your newest content on your live site.