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Youngest transplant recipient in the world, 6 years later.

It was six years ago in January that Caylyn and Chris, as well as the world, welcomed the small miracle of Oliver. Oliver is unique because if you take into account, he was seven weeks premature when listed for transplant and six weeks premature when receiving a heart transplant, it makes him the youngest person ever to receive a heart transplant.

Oliver has been fighting for his life even before his birth on Jan. 5.
On Caylyns 20 weeks well check during pregnancy, doctors noticed that something wasn’t right with Oliver’s heart. She was watched very closely in the weeks that followed. Her doctor’s advised Caylyn that the longer Oliver stayed in utero, the better his chances for survival. They were hoping to get her to 37 weeks. Even then, the prognosis was grim. Oliver’s defect was cardiomyopathy, which, to be noticed on an ultrasound, showed it was very severe. Caylyn was counseled to seek help from palliative care and make preliminary burial plans if the worst happened. She met with the Ryan House, an organization dedicated to helping families with end of life care for children. Caylyn had even bought the clothes she would bury him in.

At 33 weeks, Caylyn’s worst fears were coming to fruition when her water broke. She woke up terrified. Both she and her husband were afraid that she would lose Oliver because he was being born too soon. She immediately called her prenatal cardiologist and went to the hospital. Her medical team was already prepped and ready when she arrived, being a high-risk case. They tried furiously to help contractions stop. Caylyn labored for 72 hours and eventually gave birth despite their best efforts.

He was born naturally, even with the fear that his enlarged heart would be compressed and cause problems. Caylyn said the final birth process went so fast. He was so tiny and didn’t make a sound. She got to kiss his little head and then hand them off to her team. She says they were well-orchestrated and passed little Oliver down the line to connect him to IV’s and enteral nutrition through this tiny belly button. Caylyn’s mother followed Oliver to the NICU. When she arrived in the room, there was already a large team of doctors working on getting Oliver stabilized. His team filled the room for hours. Caylyn’s mother was patiently waiting outside, knowing they were doing everything that they could.

Meanwhile, Caylyn was discharging from the hospital as quickly as possible to be with Oliver. Her prenatal cardiologist, Dr. Lindblade, walks in as Caylyn and Chris are packing up their hospital bag. Caylyn was terrified it was awful news until she saw the smile on his face. He noted that Oliver was beautiful and was hanging in there. Caylyn fell on the bed with a sense of relief and a brief moment to catch her breath.

The next step was very carefully planning emergency evacuation from Banner Good Samaritan to Phoenix Children’s Hospital. The route had to be planned down to the detail as to avoid any major bumps or potholes that could dislodge a large clot found in his already enlarged heart.

By the time that Chris and Caylyn got to Oliver at PCH, it was morning. She had to get special permission to leave before the 24-hour observation window recommended for new mothers. They raced to the car and then to the hospital. By the time they reached the room, she had described the room as peaceful—the nursing staff at laid all of the cords out perfectly. The room was dark and quiet. She said that it was the first time she had peace and a moment to breathe in the past week. At this point it was a wait and see process.

Over the next few days, there were still many ups and downs, as would be expected with a baby surviving so much already. Medication and oxygen were at a maximum to help mitigate the worsening of his ejection fracture and condition overall. ECMO wasn’t even an option as they had never tried it on a baby so small. Plus, stroke was a real danger with the enlarged blood clot still in his heart.

When he was four days old, everyone knew that it would either be transplant or decline. He was listed on a Friday. Within 48 hours, they received the call. Before sending Oliver to the OR, the nurse asked Caylyn if she wanted to hold Oliver. With babies in cardiac distress, parents often aren’t allowed to hold their babies for days for fear that any small movement could kill them. This moment was different. She held her baby for the first time, not knowing if she would ever get to hold him again.

He was six days old when he underwent a heart transplant at Phoenix Children’s Hospital. The transplant team kept Chris and Caylyn informed with text messages through the night as they performed the surgery. They would get texts telling them of the first incision, Oliver on bypass, the heart has arrived, and finally, the heart is in and beating. Upon the final text, Chris and Caylyn were on their way and waiting to meet Oliver in the ICU post-op.

Upon entering the room, the doctors inform them that everything went as smoothly and perfectly as possible.

About a month after his surgery, the family was beginning to have real hope. They got to present at a special Valentine’s celebration meant to honor all the heart babies and the medical staff in the heart center at PCH. They finally got to have a baby shower for him.

Caylyn said she and Chris are forever grateful to Oliver’s doctors and nurses. “They never gave up hope, and we’re so grateful for that,” she said.

Today, over six years later, you would never know Oliver was such a miracle. He runs around the house with his three brothers and baby sister. Oliver is excited to play soccer once able to. He won a medal in the last Arizona Transplant Games. He loves school, even though it is virtual. His glasses and beautiful blond curly locks frame his radiant smile. He is happy and healthy.

Caylyn has made contact with Oliver’s donor mother through the Donor Network. The donor mother also had a host of complications during pregnancy due to a hyper-coiled umbilical cord. It wasn’t even a question of whether to donate when asked. She didn’t know it was possible at first but was glad that she could.

Before COVID hit, you could often find Caylyn’s warm and welcoming smile as a volunteer for Donor Network of Arizona. She has a deep calling to give back after the gift that Oliver received. Her advice to new parents just entering this journey is to trust the process; this transplant community is beautiful and welcoming. As scary as this all can be, the clinicians just want to see the babies survive and thrive. Things may seem out of control, but know there is a greater plan at work. Caylyn credits her faith, whether you pray or you meditate, just to make time for self-care. Because it’s a lot emotionally, a lot mentally, and then you’re going to learn a whole new world of possibilities.

Want to help Oliver? Donate:http://cota.donorpages.com/PatientOnlineDonation/COTAforOliverC/

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Janie Crockett

Janie-Crockett

Liver Recipient

Janie-Crockett

It was a total shock to find out that Janie was sick.  We thought that we had a perfectly healthy baby.  Family had started to mention that her abdomen was bigger than it should be and that something was off.  Although she never looked sick, she was very tiny and grew at a very slow pace.  She was diagnosed at nine-months old.  Although she was never sick in a hospital bed while waiting for her tranplant, she started to show signs that her liver was slowly shutting down.  Our life was on hold while we waited for the call that would save her life.  We received a call on Sept. 11, 2005 that they had a donor available.  Once we got to Nebraska they told us that the liver was too big and that they would not do the transplant!  It was hard not to give up hope while waiting.  All we could do was wait and pray for someone’s generosity to reach out to us.

What was life like while you were waiting for your daughter’s transplant?
As a mother to Janie, I thought that once she was placed on the transplant list it would only be a few months.  It was so hard to watch her get sicker each day and there was nothing that we could do about it, but wait.  I had no idea that it would take so long and it would be so emotionally difficult to get through.  Waiting was the worst!  We never went out of town to visit family because they were too far away from the airport.  Life was on hold for us!  We had to rely on each other as a family and have faith that everything would work out the way it was supposed to.  We all go through trials in life and come out stronger from them.  This was Janie’s trial that had an effect on us all.

Describe what it was like when you got “The Call.”
We got our “first” call nine months after they put Janie on the transplant waiting list.  We were scared, excited, nervous and happy.  We had no idea that there was a possiblity that we would get all the way to the operating room doors and be turned away.  We were angry and frustrated after being told that the liver was not a good fit for Janie’s little body.  Coming back home was hard for us, but we knew that we had to remain optimistic for Janie.  When we got the “real” call on January 31, 2006 we tried not to get too excited this time, knowing that we could possibly be turned away again!  We were definitely scared!  Scared to be turned away, scared for Janie to go into surgery, scared of the outcome of everything.

Describe your life AFTER transplant.  What has regaining your health allowed you to do?  Are you back to doing the activities you did before transplant?  What has the impact been on your family?
Two weeks after Janie had her tranplant, with 25 staples across her stomach, she was jumping on the bed!  I was afraid that she would break something loose!  I had never seen that much energy come from her before.  She was a whole new kid. We came back to Arizona just one month after her transplant, just in time for her second birthday.  Janie thrived!  Her health improved from the moment that she received the transplant.  Although she has had some setbacks in the last six years, she is doing amazingly well!  Without the donor family’s decision of saying YES to organ donation, I don’t know where we would be today, and for that, we will forever be indebted to them!

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Laura Allen

Laura-Allen

Heart Transplant Recipient

Laura-Allen

Laura Allen is a 55 year old woman, a wife, a mother of three grown children and a grandmother to two grandchildren that are 3 and 5 years old. Laura received her heart transplant on June 1, 2011 at the University Medical Center (UMC) in Tucson, Arizona.

Will you describe what your life was like before Transplant?
I was very weak.  I could not even make our bed because I could not make it around to both sides of the bed.  My husband, who is a long-distance truck driver, would make the bed before he left on a trip and when he was gone I would just sleep on one side and try not really even mess up the bed and just pull the covers up on my side so it looked made up!

Please describe what waiting for the transplant was like.
It was a little bit difficult.  I had developed breast cancer and one of the chemotherapy drugs damaged my heart so that is why I needed a transplant.  I had a couple modes of transportation.  At one time I had a scooter and then I had a walker and was on oxygen.  I was so week that I could not even carry my own oxygen tank.  The walker was nice; really nice.  It held my oxygen and had a seat so I could sit down when I needed to.

What was life like for your family while you were waiting for a transplant?
My husband is a long-distance truck driver.  When he was on a trip, our daughter who lives with us would take care of me.  When he would come home off the road, and if I was in the hospital, he would normally head straight to the hospital.  Before he would leave on a trip he would leave things out for me so I could around in the house.  He would leave pots out on the counter and leave things where it was easier for me. If he thought I might need a can opener, he would leave a can opener out for me.  Maybe leave out a couple cans of soup.  Anything that would make my life easier he tried to do before he left and then when he came back it was the same routine.   I got spoiled!  He even did all the laundry.

Breast Cancer – what was that like and what was transplant is like after cancer?
When I had breast cancer I was told I would have to wait five years if I were to get a heart transplant.  When I first went to see the doctors at UMC they realized that I was not five years out, but I did not know that I needed to be, at that time.  So the doctors said I had to wait until I hit the five-year mark and then I would be considered for a heart transplant at that time.  I was pretty disappointed.  I knew how sick I was and I just wanted to feel better.  So I and my husband said okay, that we would wait, and then we would be back.  We waited and when the time came we went back and the ball got rolling and eventually I got the word that okay that this is going to happen.  I started going down to Tucson for all the testing.  And then it went on from there.  I waited 2.5 years for the transplant.  That would be a total 7.5 years of waiting between waiting for the five years after the cancer treatment and then 2.5 years waiting for the transplant.

How long after receiving treatment for your breast cancer before you were told you had developed cardiomyopothy?
Not long after.  I did not even know that I was sick.  I had gone to visit my sister, who lived in an upstairs apartment, and I was having a difficult time climbing the stairs.  I was breathing hard and panting.  My sister asked me if I was really having that much difficulty getting up the stairs and I said, “yes.”  And she asked me if was okay and I thought that I was okay.  Then I went to visit my other sister who lives in Atlanta and as I went through the airport it seemed to me that people were whizzing by me and I was in slow motion and having a hard time moving.  Finally, I got to Atlanta but I could not sleep.  I could not lay back and breathe well.  I told my sister something was wrong with me.  I did not know what it was but knew something was wrong.  I made the best of that visit and went to my doctor as soon as I got back.  They found I had cardiomyopothy and congestive heart failure due to adriamicine.

What is like being on the waiting list?
I just did not know how long it would take.  Some people get their transplant real quick, some people have to wait awhile. I wondered how long it was going to take for me.  And then one day I just realized it was going to happen when it happens.  And I know it’s going to happen because enough people told me it was going to happen.  So, just wait.  So that’s what I did.

What was it like when you got “The Call?”
Oh my goodness, when I got “the call” I did not; you just don’t think it is real.  When the phone rang I was actually getting ready for bed.  Actually, I was down on my knees saying my prayers when I realized it was a 520 number.   I was thinking it was my friend in Tucson letting me know that her granddaughter had had her baby.   So when I was finally up and able to get the phone it was Isabel and she said, “well, Laura, are you ready to come down to Tucson.” And I said, “are you serious” and she goes “that’s the first thing they usually say.”  So then I said, “oh my God!” and she said “that is usually the second thing.”  I said, “is this for real?” She answered, “yes this is for real.  Come on down.  Take your time – do not be in a real big hurry – be safe getting here.”  I was kind of in a daze.  I kind of walked around in a circle; I did not know what to say or what to do.  I went and got my daughter and I said, “we got to get to Tucson.”  And of course, she does not do freeway driving so I drove myself down to Tucson for my heart transplant!

How did you contact your husband or how did he find out?
I was driving to Tucson and our daughter got on the cell phone to call my husband because I could not talk to him because I was driving and I did not want to be distracted because I had “business” – “big business.”  He was in Texas at the time so he was not actually there for the transplant but made in to the hospital within a couple days.

So how were you doing when he finally arrived at the hospital and saw you for the first time with your new heart?
He was amazed.  He was just amazed to see me there after this transplant and talking to him.  I had all these IV’s and drains but he was really happy to see me and be able to talk to me.

How has your life changed after transplant?
I can walk and talk at the same.  Before I used to say to people, “don’t talk to me I can’t talk to you why I’m walking.  We are going to do one or the other; walk or talk.  We can sit down and talk or we can just walk.”  Walking was a little bit difficult, distance wise.  Not so much walking itself, just covering distance.  I just did not go places.  Mainly I just stayed around the house because I did not have the energy to do a whole lot.  The phone would ring and I would not even be  in a hurry to get it.  I figured if they were calling and needed me that would call back.  It was really a chore to just get to the phone.

Do you have any limitations since receiving your transplant?
I am not limited in anything.  I think my family wants me limited because they want me take it easy.  But I am just ready to do some things.  Some charity is going to get a bunch of things from me.  Things that I have collected over the years when I could not do anything.

What impact has your regained health had on your family?
Although they do not want me to do too much, they are loving it because you know, I cook a little more and they like that!  My daughter that lives with us will occasionally leave her laundry in the dryer and I will fold it for her.  My other daughter that does not live at home says it must be nice to have someone do your laundry!

How old are your grandchildren and do they know and understand what it means for you to have had a transplant?
Marty is 5 and Cash is 3 and yes they understand.  They came to visit me when I was still in Tucson, after my transplant, so they were familiar with the mask and gloves.  In fact they thought the mask and the gloves were the coolest things.  And they were very cautious when I first got home.  So, yes, they are aware of what has happened to me and when they see my surgery scar they ask, “Grandma is that where you got your new heart and I always answer yes, sure is.”

Have you placed any restrictions on yourself in regard to immunosuppression that you do now that you did not do before?
No I am just trial and error.  If I can do it, I am doing it.  Sometimes I say to myself, I probably shouldn’t be doing this but I’m just going to go ahead and see if I can get it done.

In regard to illness, I am always wondering, when I am next to someone, I am wondering if they got their flu shot yet, and which flu shot did they get.  I pretty much try to keep my distance from people other than who I am seeing.

Have you done any traveling since your transplant?
We drove across country to Iowa.  My daughter and my son and I and I did all the driving – basically.  And we had a great time.

Have you had any contact with your donor family?
No I have not had any contact with the donor family.  I would love to send them a message.  They are always welcome to send me a message.

Would you like to share anything we have not asked you or something you would like to share with the community at large?
I would just like to say that I have always been a woman of faith and I always knew this transplant would happen because I kept telling people, “when” I get my heart – I just knew it would happen.  It was always “when” it happens, “when” it happens, “when” it happens.  I just feel the focus is on me but it is more about the power of God and the donor family giving me a second chance life and a better quality of life.

Were you involved with support services before transplant?
Yes.  Someone had told me about the New life Society (NLS) and I kept saying I was going to go, I was going to go, but I just kept lying on the couch.  One day I got up, looked at the newsletter from NLS that somehow kept finding its way in the mail to my house, and finally said I am going to go to one of those meetings.  One day I just got up and went.  I went to the meeting at Grunow and it was the best thing I could have ever done.  The people were all so nice.  Everybody just welcomed me.  I did not feel like I was alone even though I came by myself.  I just did not feel alone.  I went home and told my husband about it and told him he had to go to one these meeting with me and meet these people.  They are so encouraging and it is like one big family.  And he said he was going to go when his schedule permitted it.  He was able to make one of the meetings and then he went to one of the Coco’s dinner and he loved it.

Did the meetings provide anything that was helpful to your husband?
Oh yes.  There were people there that would tell him certain things about what to expect and things he could do.  He was very grateful for the information.

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Andrew Bombeck

Kidney Recipient

Andrew Bombeck – Andy is a kidney recipient of 11 years after receiving a live donated kidney from his wife Shari on April 11, 2003. He is a retired elementary school teacher after 30 years and now spends his time writing, playing tennis, playing guitar, and promoting organ donation by working with the New Life Society’s Schools Program and volunteering with Donor Network of Arizona. He was on the board at the Arizona Kidney Foundation Board for 8 years and currently serves as a board member and has competed with Transplant Team Arizona in the Transplant Games since 2008. Andy lovingly admits he’s in a losing battle trying to keep up with his 8-year old son, Michael.

Will you describe what your life was like before Transplant?
Over the years prior to my kidney transplant in 2003, my energy level was slowly declining. I was teaching elementary school at the time.  Most teachers will agree that patience is the one thing that makes a good teacher.  Because my health was declining, the two years leading up to my transplant in 2003 were difficult.  I have to admit it made it very challenging to be the kind of teacher I had been, as my patience declined as well.  I continued to do most things I had done prior transplant, but it was harder because my energy level was so low.

Please describe what waiting for the transplant was like.
Prior to my transplant, I was dating Shari who told me that if she was a match she would donate one of her kidneys to me.  At the time, I was on transplant waiting list at Good Samaritan Hospital.  After Shari was tested and confirmed to be a match, as you can imagine, I was more than ecstatic!

Will you share some of your dreams and fears while waiting for a transplant?
My greatest fear before my operation was not surviving the operation.  Many people do not know it, but my mother had kidney failure and was also listed for a kidney transplant.  In 1996, after waiting many years on a transplant list in Phoenix, my mother finally got “The Call” and received a cadaver kidney.  Five days after her transplant she tragically and unexpectantly passed away.  It was because of that, that I feared the actual operation more than I probably should have.

One day, I made a pact with God and promised that if I survived the operation I would attend church every Sunday; and I have kept that promise. One year after my transplant, in 2004, Shari and I got married and continue to remain “connected” in more ways than the “obvious” one.

How has your life changed after transplant?
My life dramatically changed on April 11, 2003, when I woke up in the recovery room at John Hopkins following my transplant.  I instantly felt I had regained all the energy that had been gradually declining over the years, prior to my transplant.  Like many recipients, I realized then more than ever, just how precious each and every day is and try hard to take advantage of that.  The first “big” thing that Shari and I decided to do in 2006 was adopt a six-month old boy from Guatemala named Michael. I always wanted kids but because I married late I never thought that would be possible.  Today I “pretend” to have the energy needed to keep up with a teenager, which prior to my transplant, would have been truly impossible.  Three years ago I retired from teaching and spend a lot of time playing tennis, writing and promoting organ donation.  I am a volunteer with the National Kidney Foundation of Arizona, Donor Network of Arizona, Transplant Team Arizona and Transplant Community Alliance.

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Ed Ozier: A brief history of kidney transplant in Arizona

Ed has seen a few things in his life. He has served in Vietnam, got his bachelor’s and graduate degrees, and married the love of his life. He has had so many beautiful life moments to share over his lifetime. He has also had a very surreal timeline running parallel to these moments. He lived with kidney disease in a time that a kidney transplant went from science fiction to reality.

It all started with a bad case of gout, or that is what Ed attributed his pain to. He began getting the attacks in high school off and on. The attacks continued but stayed the same through his time in the Army. He had an added problem of poor eyesight, which he recognized right away in basic training when he couldn’t hit his targets. This turned out to be keratoconus, which is an added indicator of kidney disease. Upon an exit medical exam from the army, Ed was told that he had high blood pressure and albumin in the urine (an indicator of liver/kidney dysfunction), but there was no follow up required; thank you for your service.

After finishing military service in Vietnam, Ed was married to his wife Linda and finished graduate studies at Northern Arizona University. When a terrible gout attack left him nearly immobile, he became very concerned. He is thankful that he was young and skinny, or else his wife wouldn’t have been able to have helped him to the doctor.

His local doctor realized Ed’s condition was out of his scope and referred him to a kidney doctor in Phoenix. He advised him to leave immediately and that his condition needed prompt attention. Ed was disappointed because he was 16 units away from graduating, but he went anyway.

After making his way to Phoenix, he met up with his nephrologist, one of Phoenix’s first in the 1970s. He had his appointment and a whole lot of lab tests. The conclusion was that his kidneys were in terrible shape and that he was very sick. His kidney doctor notified him that he was on dialysis as of that moment.

This is what Ed considers to be the true beginning of his transplant journey. At the old Northwest hospital on 59th and Northern. It was the early 80’s now, and he was a regular at the dialysis center. He went three days a week after closing his business for the night. The staff there tried to make things fun because most spent quite a bit of time there. Every Wednesday night, they would watch the TV show Dallas together. The regulars would have time to catch up on their lives and support one another. Reality would set in when they noticed that someone would stop showing up. It was sometimes a sign of improving health or a transplant, but it was often a sign of decline or worse.

Ed, like so many others, immediately began the search for a living donor. His mother wasn’t a match for him but was for his sister, who was also burdened with kidney disease. And so, he was placed on the waiting list. He had a couple of false alarms of donors who didn’t end up being a match. But finally, the day came when his surgeon told him to prepare because they finally had a match. Ed remembers his surgeon with much reverence and respect. Dr. Van der Werf moved to the United States in the late sixties and established the Netherlands, Florida, and Arizona’s original kidney transplant programs.

His transplanted kidney was good and true for 14 years. In the last 3 of those 14 years, he noticed a slow decline in function. It was time to go on the list again. But this time, with a high antibody count, which worked against him on the waiting list. He also had different symptoms, one being pericarditis, which causes fluid and inflammation around the heart. Once the pericarditis was diagnosed, he began dialysis again. Except for this time, it was a journey of 54 months, or 4 and a half years, on dialysis. In those days, few people got transplants at all. But even less so that was highly sensitized. After his long wait, he was rewarded with a second (or third in Ed’s case) chance at life. He remembers waking up and being clear-headed for the first time in years. And with the meds not being novel and more streamlined, he didn’t have the same side effects from the immunosuppressants and steroids as the first time around.

This second transplant also stayed true for another 14 years. And the same as the previous time in the last 3 of those years, his numbers declined again. This time they were using IVIG to counter high antibodies. Plus, he had a former graft get infected. There were so many surgeries. But luckily for him, the new rules came out regarding kidney transplants. A CRPA (Calculated Panel Reactive Antibodies) calculator helped kidney patients get priority on the waiting list. This time he was on the list 9 months before he needed dialysis. Another 9 weeks of dialysis before he got his call. And that is the kidney he is thriving with until this very day, his fourth chance at life.

These days Ed looks forward to his advocacy work with the AAKP, time with his Transplant Team Arizona teammates, and most importantly, valued time with his family. He talks about how he got to go to Washington DC with the AAKP (he is a lifetime member) and advocate for some of the current kidney legislation making it’s way to the Senate. He found the representatives there to be very helpful overall.

Having a genetic link with his father with kidney disease, he decided to get into his family’s genealogy. He found links in every generation back that he had researched, showing nearly a hundred years of his family surviving with kidney disease, but never for very long.
He feels fortunate to be thriving with his siblings in this day and age, where medical advances can overcome such things.

The best advice for new transplant patients is to educate yourself. Your doctor may tell you things, but in the end, you are in charge of your care with the educated guidance of your medical staff. Make sure to speak up and be part of the medical team.

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Brian Brener

Brian-Brenner

Brian-Brenner

by Brian Brener

My name is Brian and I am the very grateful recipient of a heart transplant which I received at Cedars-Sinai Hospital in Los Angeles, California. I was born in South Africa 65 years ago with a rare congenital heart condition known as Congenitally Corrected Transposition of the Great Arteries (CCTGA) as well as pulmonary stenosis and dextrocardia.

The fact that doctors knew I had a problem when I was just one-year old and a complete diagnosis was known when I was 15 was in and of itself amazing considering that that occurred 50 years ago. I went to Guy’s Hospital in London when I was six and had a catheterization when I was 12. I remember my parents viewing it on an 8mm projector!

The condition reversed my ventricles with the right ventricle becoming the pumping ventricle. That ventricle, which normally pumps blood to the lungs, is designed for a pressure of 25/5 while it was actually subjected to 120/80. The doctors predicted that I would be fine until I was 55 when I would need a valve replacement. Even more amazing – they were correct as most people do not live this long without an issue. I was 57 when the ventricle deteriorated from the high pressure and I started having trouble with stamina and breathing. It was 2004 when I was told I was in Stage II heart failure and would eventually need a transplant. Up until then I had lived a fairly normal life as an IT professional, I was happily married and had three wonderful children. I played sports like doubles tennis, soccer goalkeeper, etc.

In 2006 a fortunate, in retrospect, event happened. I had numerous respiratory issues over the years with many bouts of pneumonia and bronchitis. I was finally diagnosed with Common Variable Immune Deficiency (CVID). I started receiving infusions of Immunoglobulin G (IgG) (which are antibody molecules) on a monthly basis. For those who understand transplants and rejection, this surely benefitted me later as I had no antibodies that would inhibit transplant.

In 2004, I consulted with Dr. Copeland at the University Medical Center (UMC) in Tucson. He became aware of my anatomy but told me I did not need a transplant at that point in time. In the years following, I was treated for heart failure by doctors at another facility but was considered a high risk candidate for transplant. I returned to Dr. Copeland at UMC in late 2008. He did a right heart (in my case left heart!!) catheterization and determined I had pulmonary hypertension and a transplant was not yet possible. With little time left to live, he inserted a left ventricular assist device, LVAD (RVAD in my case). He became confident that transplant was feasible and he believed, while others did not, that the LVAD would correct the pulmonary hypertension. He would later be proven correct. In July 2009 a catheterization was done and I was listed for transplant in September 2009.

As others have said, the LVAD kept me alive while waiting for a transplant but it was not a panacea. It did not fix valves, the right side of the heart or other issues. It required my wonderful wife to do a sterile dressing three times per week for many months. It was not an easy device to live with but what it did do was allow me to see my grandkids, visit friends, go out for dinner, go to the supermarket and the movies and I was able to continue to work full time from home.

In October 2009, I received THE call. We packed up all the LVAD gear and I drove myself through rush-hour traffic in Phoenix to Tucson for my heart transplant. I was prepped for surgery, wheeled into the operating room and was anesthetized. But physical inspection of the donor heart found it to be hard and diseased, which had not shown up in the pre-testing, and the transplant was called off. That was the first of five false alarms over an 18-month period.

In June 2010, Dr. Copeland left UMC and I was told they were no longer able to do my transplant due to the complexity of my heart issues. They contacted Jenna Rush, Transplant Coordinator with Cedars-Sinai Heart Institute. I went to LA for an evaluation and was listed shortly thereafter. Air ambulance service was pre-arranged and I began my wait. On one occasion, I presented with cold symptoms in the morning and received THE call again that evening so I had to decline. That gave rise to a humorous anecdote. My wife was with our grandkids when I called her and gave her the news. My eight-year old granddaughter started crying, but my five-year old grandson Craig said, : “Talia, don’t cry. The doctor will put the heart in the fridge until Grandpa is better!” Disneyland was in their future! On another occasion I was waiting on the runway at Scottsdale Airport for the air ambulance to arrive (which was 5 minutes from landing) when the transplant was again called off. It was a scary rollercoaster ride.

On April 27, 2011, Cedars Sinai and Dr. Trento found the right heart. My wife had left town that morning to visit our grandkids in New York. Our daughter flew with me to Los Angeles in a small Lear Jet air ambulance. We arrived there four hours after the call. Surgery started at 5.30 a.m. and my wife arrived from the east coast midway through the surgery. Bill Sears, Head of Cedars Heart Transplant Ambassadors, sat with my family throughout the surgery offering encouragement. The volunteer organization at Cedars is yet another fantastic component of their care. Dr. Trento completed my complex heart transplant surgery successfully.

The rest, as they say, is the rest of my life. I unfortunately needed a pacemaker but was discharged after 13 days. We stayed in Los Angeles for biopsies and post-transplant care. My body was extremely atrophied and recovery was slow, but I walked a lot and had some home physical therapy. After three months, I returned home to Phoenix but fly to Los Angeles monthly for checkups. I was fortunate to be entered into the Allomap trial for rejection and so have only had eight out of the 13 biopsies. I have had one small scare but no real rejection episodes. I started cardiac rehabilitation and have slowly gotten stronger. Last week I completed the AHA 5 km Heart Walk.

It was a long journey but the story has a happy ending. This is due to many people and many things, not the least of which is a supportive family. I am eternally grateful to my donor family whose generous donation made writing this story possible and to whom I have finally written after much contemplation.

Additionally, I am deeply indebted to Dr. Jack Copeland, formerly of UMC in Tucson as well as all the doctors, pharmacists, nursing staff and technical staff there who gave me not only excellent care, but became personally involved and treated me as much more than a patient. They enabled the future for me. I would also like to thank Jenna Rush, Transplant Coordinator, Dr. Alfredo Trento, Dr. Lawrence Czer, Drs. Kittleson and Patel, as well as many other medical professionals at Cedars-Sinai.

There are so many ways to donate – organs, money, emotional support and/or time.
My message is simple. Please be a donor. It saves people and changes family’s lives.

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Sharon Thomas

Sharon-Thomas

Multiple Organ Transplant – Heart/Lung and Kidney

Sharon-Thomas

It was 1986 and my life seemed perfect. I had a loving husband and two beautiful daughters, ages two years and six months. I started having headaches and fatigue. After many tests, I got the news that I had Primary Pulmonary Hypertension which is the hardening of the small muscles and cells of your lungs. Most people at that time died within two years of diagnosis.

I went through the only clinical trials they had at that time, and they only made it worse.  My only hope was to receive a heart and double-lung transplant.  At this time there had only been a little over a dozen heart and double lungs transplants in the nation.  The next year or so was filled with many challenges. One of the worst was that my insurance decided that my treatment was considered “experimental.”  All at once I was trying to take care of my children, my husband, my health, and fight for payment of the treatment I so desperately needed.  My family and friends raised money and helped with childcare and meals.  My extended family even moved in with us to help with the kids.

My health eventually deteriorated so much that I had to go to the University Medical Center in Tucson.  On July 17, 1988, a young boy experienced a tragic fall and his family made the decision to donate his organs.  The transplant team went to the hospital in Vegas to retrieve the organs.  My husband was in the waiting room when he saw a doctor come in with a cooler and he asked if those were my organs…. they were!

Seventeen days later, I was out of the hospital and walking around our apartment complex in Tucson.  Within 30 days I was back home in Scottsdale, but still returning to Tucson for checkups.  I would not be here today if I had not held strong to my faith, my family, my friends, and my doctors, all of whom got me through this experience.

I am telling this story to encourage anyone who needs a transplant to have courage for today and hope for tomorrow.  I am on my 24th year as a transplant recipient; however, 11 years ago it was necessary for me to receive a kidney transplant.  Would I do it again?  In a heartbeat, because all the happy, sad, painful, dreary, and exciting moments are worth it!  Save a life; be a part of a miracle.  Be an organ donor.