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Life story
November 25, 1990
 

Three Hearts, One Life  -  By Ryan's Mom

The Early Years

Ryan's first 5 years of life consisted of a healthy balance of childhood delights and boyish mischief.  He was the lucky little brother of 5 doting sisters, and never lacked for attention.  Life was good.

 

Then two days after his 5th birthday, he fell ill.  Within a few days of being unable to keep any food or drink down, his weight-loss was alarming.  A visit to the emergency room ended with the devastating news that he was experiencing congestive heart failure.  The diagnosis would be viral cardiomyopathy.  He spent 3 weeks in a cardiac intensive care unit where an attempt at giving him back a measure of life quality through drug therapy ultimately failed.  On January 5th, 1991 at 5 pm, the UCLA medical center placed him on the transplant list. We knew we were looking for a miracle, because the average wait for a heart was 9 months and he was already living on borrowed time.  We got our miracle.  Two hours after he made the list,  the call came in.  I heard the helicpoter take off from the roof of UCLA medical center  before I knew that it was a lifeflight on its way to deliver a team of surgeons to a lear jet, which then headed to Canada where a heart was harvested for little Ryan.  A 9 year old boy had passed away before Ryan was listed.  The boy's noble family consented to the giving of his organs, which helped 21 children.  His heart was a perfect match for Ryan. 

 

At the time, we were told that there was no reason to believe that this great gift would not provide our young son a normal life span  Still, as they wheeled him through the double doors into the cold O.R., I wondered if I had made a mistake by agreeing to a transplant.  This emaciated little boy had flatly refused his permission for the operation -- at least until we thought to explain to him that he would not be awake for the procedure.  I knew that life for my young son would never be what it had been - carefree and cozy.  The invasive procedures and needles and drugs and side-effects would mean a new "normal" that would last the rest of his short life.  He would never again feel "good" in the way that "good" feels to most of us.

 

Ryan went home on 21 drugs 15 days after his transplant.  Only three of them prevented rejection of the transplanted organ.  The rest treated the side effects of those 3 powerful drugs.  He was immediately faced with needles, biopsies, and angiograms and regular trips to the hospital.  We lived on edge, always concerned what these invasive tests would reveal.  But he did remarkably well and adjusted to the masks and restrictions and around-the-clock drug routines.  He never once refused to take his meds, although he came close when he was introduced to liquid Potassium.  That stuff was so nasty.  When the nurse explained he had to take it because he was too young for pills, he insisted he was not.  So she brought him two huge pills in a pill cup.  He downed them so fast no one had a chance to tell him about the water part.  He was a determined little boy. 

 

A few months later he was asked to be the poster child for the American Heart Associaton.  He spent a day with Magic Johnson at their annual Golf Tournament, and did a TV interview.  He made the news several times over before he was 6.  He was able to start kindergarten in the fall and life started to feel "normal" again. 

 

 

 

1991
 
Ryan and Magic Johnson at the American Heart Association Annual Golf Tournament
December 5, 1999
 
A Second Heart

At age 12, a routine angiogram showed that Ryan had a blockage in one of his major coronary arteries.  A stent was placed, but it soon scarred over.  The diagnosis was secondary rejection, or "graft coronary artery disease" treatable only by another transplant.  Ryan was again placed on a transplant list.  He then became severely anemic and his status on the list was placed on hold.  The cause of his anemia was eventually found to be "Parvo Virus" (not related to the dog disease. )  Basically, his marrow was not making red blood cells.  The treatment involved many transfusions, which were then followed by infusions (IVIG) to reduce the antibodies introduced by the transfusions.  In time, the antibody count was down enough that he could be activated on the transplant list again.  By this time, he had had several heart attacks, but felt no pain, being as the nerves that sense pain are cut during transplantation.  He was very weak and limited in what he could do, but never complained.

 

My pager went off on a December night in 1999 just after we had cut down and brought home a  17- foot Christmas Tree.  Ryan and I would not see it decorated, except in photos.  Dave and I packed a few things and took off to Stanford Medical Center, normally 2 1/2 hours away, but only an hour and 45 minutes on this particular day.  There Ryan received his second transplant.  We were not given any information about the donor. Ryan and I stayed in an apartment on the hospital grounds for 3 months following the transplant because of the frequent visits to the hospital required. This transplant was a particularly difficult experience.  The steriods that are given to prevent rejection have a devastating affect on kids who receive it between the age of 12 and 17.  He was 14.  Swelling and stria (stretch marks) permanently scarred his body from his upper body to his mid-calves.  He dealt with the disfigurement nobly, and found that his friends stood by him.  Remarkably, these friends were newcomers in his life.  We had moved to Folsom only 3 months before his transplant where Ryan started at his new school, Folsom Middle School. He made friends easily, and he was admired for his great attitude.  In time, the swelling subsided and he grew into a very handsome young man.  He always handled the scarring of his skin with good humor. 

 

Although the steriods he was given were expected to stunt his growth, Ryan towered over the rest of us by the time he was 15.  He also grew wise beyond his years and funny as all get-out. His wit was quick and his personality very unique.  He developed a love of music, and learned to play guitar and work complex recording equipment.  With the help of Dave and myself, he wrote and produced his first song as a graduation project.  That song can be played on this site, "Searching for Sanity."  The lyrics are so dark and depressing that I asked him if there was something I should know - did he need counseling...?  He grinned and said that it was part of a "Project" - meaning that the song introduced a dilemma that would resolve into something triumphant when the project was complete. Some years later he created a website for his Project that he was not granted time enough to complete.  It can be viewed at: Myspace.com/UntitledRyanProject

 

As he approached graduation from high school and Seminary, he was asked to be the speaker at his Seminary graduation.  We were all so impressed with the talk that he gave.  I was blown away and so touched.  I wish to this day I had videotaped it.  His delivery was powerful, and although I cannot reproduce that,  you can read his talk posted on this site.  (Blue tab left side beginning with "Ryan speaks..." ) 

 

He attended summer school at BYU.  He then returned to California and attended college and worked at Ross.  Eventually he transferred to a Ross in Utah, believing he was "too old" to live at home at the ripe age of 19. He enrolled in 18 units of college courses and worked full time.  The heavy load was a huge stress, and he ended up with a relentless virus.  After that tiring semester, he felt so burned out that he took a break from school, but continued working full time at Ross as a supervisor -- a very popular and well-liked supervisor.   He became especially popular with one young lady named Sara Rawlings.  The two became the best of friends. 

December 2006
 

A Marriage Made In Heaven

Ryan and Sara were married in December 2006.  By this time, Ryan had already become the favorite uncle of Sara's nieces and nephews.  How he loved those kids!  Sara's parents and family adored Ryan and he loved them.  They tolerated his slightly irreverent humor and admired him for his graciousness in times of stress and pain. Although he was young to marry, this was the right decision and began the best and hardest chapter of his life.  As the head of household, he faced hard decisions regarding school and career and they each had medical issues that put a heavy strain on their budget. Ryan eventually left his job at Ross and began working for Regents Blue Cross.  During that time he tried to start an exercise routine using the equipment provided at the workplace.  It would always make him sick, and it worried me that he was gaining weight from his now sedentary job and showed signs of poor heart health.  But I tried not to think about it.  He hated his job there and the politics of the workplace and eventually landed a job with Musician's Friend.  What he didn't know at the time was that this job would provide him with California based insurance, ever so much better than Utah based insurance which would prove to make life just a little easier in times of medical stress. 

 

In March of 2009, Ry and Sara moved from Orem to West Jordan to be closer to Ryan's work and to the college he would be attending.  On moving day, he was feeling poorly. Two weeks later, his health had declined to the point of being unable to hold down anything, including his meds.  A visit to the emergency room ended in an ambulance ride to the University of Utah Medical Center. 

January 1, 2009
 

Three Hearts, One Life

The Final Curtain Call 

University of Utah is known for its Heart research.  Cellcept, a major transplant medication was invented there, as was the Jarvis mechanical heart.  So we felt comforted that Ryan was in the best of hands.  An angiogram revealed that he had survived a major heart attack. And deep in his left ventrical beyond the hope of placing a stent was a life-threatening blood clot, blocking a major vessel.  A biopsy also revealed some minor cellular rejection, which was treatable.  Unfortunately, the dye used in the angiogram began a stuggle with kidney failure.  He spent a week in the hospital and was grateful when his kidneys started to recover, allowing him to go home. 

 

He improved some each day for a short while.  He had high hopes that the clot in his ventrical would dissolve, and that he would recover enough heart function to live normally again.  As for me, I could not forget that the last time he had a blockage, at age 12, we were told he needed another transplant, the only cure for graft coronary artery disease. 

 

In mid-April I flew to Utah to be with Ryan and meet his doctors.  At his clinic visit I asked about a transplant, but that question would not be entertained. The doctors said they believed his heart had a lot of life left in it.  Ryan clearly did not want to discuss a transplant but I asked him if he would agree to a third if it were offered.  At that time he told me he did not feel it would be fair.   "I've received two transplants," he said.  "It's someone else's turn."   My own heart felt heavy.  But Ryan was determined and believed he would recover.  He asked us to celebrate the fact that he was not dead.  He had survived.  I did my best to hide my fears and join him in celebrating this great miracle.

 

Ryan and Sara and I had a wonderful evening together on the Thursday night before his doctors started him on Coreg, a medication that they claimed would help delay the progress of his coronary arterty disease.  The big problem we soon were to discover is that Coreg lowers blood pressure.  In Ryan's case, it played havoc with his weak, damaged heart, already failing to provide adequate blood supply even at normal pressures.   

 

But on this Thursday evening, things were looking up.  Ryan wanted to do some walking and chose a nearby mall where we planned to find some jeans for Sara.  So he and Sara picked me up and we set out for an evening of mild exercise.  He was too fatigued to walk for long, but it was a start.  During the drive, Ryan introduced me to a song by Glen Hansard, a haunting little melody that he played several times as we drove.  I was well aware that one day too soon that song would haunt me and soothe me with the memories of the night I spent with my son before he died, when together we enjoyed his music, walked the mall, and oh, yes -- enjoyed Thursday tamales at Cafe Rio.  When I need a good cry, I play "Falling Slowly."

 

He started the Coreg before he went to bed.  The next morning he texted me that his blood pressure was 78/50.  I texted him back to call the transplant coordinator.  When my phone rang a short time later and showed his number, it was Sara's voice.  "Ryan passed out and I couldn't get him to respond.  I called 9-1-1 and he has been taken to the hospital."  

 

Sara picked me up and we rushed to the hospital, not knowing what to expect when we arrived.  To our great relief, Ryan was conscious and seemingly fine, except for the bump on his head.  As a precaution, they sent him by ambulance back to University of Utah for observation. 

 

He seemed fine that day and the next.  We expected to take him home when we returned the next day, Sunday morning.  But we found him feeling very poorly.  They had started him on a time-release form of Coreg the night before.  His blood pressure had dropped and he was trying not to vomit.  Within minutes of our arriving, he said, "It dropped," began to heave, and went into full cardiac arrest. 

 

Thus began a long vigil in the ICU.  The compressions and intubation used to revive Ryan caused lots of bleeding from his lungs.  Meanwhile the Coreg continued to play havoc with his heartbeat.  Sara and I spent the night suctioning Ryan's lungs and alternating a fan and a blanket as his eratic heartrate caused him to be hot and cold.  It was a hellish night, and we feared we would lose him from pneumonia after all that had been done to save him.  He stayed determined, and helped us by coughing up the blood.  None of us slept all night.  It was exhausting for Sara and me,  but far more for Ryan. 

 

The next day a pacemaker was placed. 

 

Ryan's kidneys were continuing to struggle for reasons which no one was able to determine.  However, the drugs used to prevent rejection commonly cause kidney failure.  Eventually, he was allowed to go home, but the escape from the hospital only lasted a few days.  The day Ryan was re-admitted to University of Utah hospital, I called Stanford Medical Center to discuss his case with the only person I could find there who had known him when he was there for his previous transplant.  I was told at that time that Coreg was never indicated for post-transplant patients.  It seems a fatal mistake had been made that cost him weeks if not months or years of his life.   

 

Ryan was eventually started on dialysis.  Then one day after dialysis, he was being helped out of bed by a male nurse when he again suffered another full cardiac arrest.  This time, he remained unconscious.  There was talk of putting his body on ice to reduce damage and give him a chance to recover.  This sounded miserable to me and I encouraged Sara to try to get him to respond to her.  Eventually, she was able to get him to squeeze her hand on command, and so the ice plans were abandoned.

 

The next day was a gift.  He was in great spirits.  His short term memory was affected by the medication, but he seemed to feel so much better.  By this time, he had not held down but a few swallows of soda or Ensure over a number of days, as hard as he tried.  We knew that he could not last much longer without a transplant. 

 

He was placed on the list for both a kidney and a heart transplant, but after a few days Ryan let us know he was not comfortable with the decision.  He apologized profusely for letting us down.  He hated to disappoint us, but did not feel that he should be on the list.  There were 4 others of his body size and blood type on the list.  "It's somone else's turn" he had said early on, and again the night he asked to be taken off the list. 

 

For his final wish, he asked to be taken outside.  The nurses hooked up his wheelchair to a tower of medications that required two people to manage, and with his family, he enjoyed the outside air one last time.   It was a beautiful Sunday morning and Ryan loved it.  Finally, he was ready to go back inside, at which time the life supporting medications were turned off.  The hospital provided a beautiful family room and allowed us to stay with him around the clock.  Ryan died the following Thursday, June 4, 2009, with Sara and I holding his hands, and family surrounding.  The arrangements had been made for biological donations, which were taken care of later that day.  He was able to give all his major bones (replaced with prostheses) skin, corneas, valves, and vessels.  The lives of many were extended or improved because of his donations.  It's a wonder for us to realize Ryan's DNA is still here doing good for others on this Earth.

 

Services were held in Springville on June 13, 2009.  A storm came through and took out the power just as the video presentation began toward the end of the service.  (The video presentation can now be viewed on this site.  See Audio/Visual on the menu to the left.) The rain continued through the graveside service, then the sun came out again for the rest of the day.  It all seemed rather symbolic. 

 

We love you and miss you more than words can tell, Ryan.  God speed, until we meet again.