Ryan's Heart Transplant
Donation protected
If you desire to donate, please "donate life" by becoming an organ donor: (https://registerme.org/). If you are already an organ donor, maybe mention it to a young person who has just received or is going to receive their driver's license.
Thank you!
Ryan and Anna
Ryan' Story:
Hi everyone! Here is the story of my heart transplant. I am writing this from the ICU, 4 days after transplant (Nov. 6, 2015):
Part 1. Realization:
In 2013, a friend suggested I have a physical at Stanford Hospital in Palo Alto. I soon learnt that I had inherited a genetic disease from my Mom called Laminopathy. For me, I had inherited a "perfect storm" of cardiac diseases including aggressive terminal heart failure, chronic atrial fibrillation and various arrhythmias. "Sudden Cardiac Death" was the only symptom of my disease. In August of that year, it was somewhat surreal when I had a pacemaker implanted.
In 2014, I started to show serious symptoms. I became very weak and it was becoming difficult to walk, breath, sleep and generally function.
It was at this time that my Stanford Team started to throw around the word "heart transplant". If having a pace maker at 38 was a surreal concept, having a heart transplant at 41 was completely overwhelming.
Part 2. Support:
I think now is a good time to say that this would literally not be happening without Anna. When I say, "not happening", I mean I would die. Not only has Anna shown the most incredible resolve and enduring loyalty, love and support, but also she has been a perennial force of nature in every aspect of my life.
The incredible cardiac staff at Stanford is burdened to choose who will receive a life-giving organ. They told me on more than one occasion that Anna's unfaltering support reflected in her attitude and the fact that she took out her laptop at every meeting and took meticulous notes were a factor when they chose me.
In June 2015, Anna and I had planned a trip to Italy to ask Anna to marry me. The Docs made the choice to hold off sharing that they had made the decision that I needed a transplant so that I could ask Anna. In Italy, Anna said “yes” and I am forever in their debt, as we were engaged on June 8th, 2015.
When we returned, we were scheduled for a routine clinic visit. At that visit, the Doc's shared that my cardiac output was the most dramatically and profoundly low that they had ever witnessed. They were shocked I was on my feet and immediately admitted me. I lost 20 pounds of water (hard for a weak heart to clear water) in a few days through diuresis and they started to fine-tune my meds.
The Docs asked to meet with Anna and I. It was then that they asked, "How long do you think you will live?” I responded completely shocked, "Hmmmm... I don’t know, many years?". The Docs retorted, "You will not make it a year".
Well, that was annoying. I had plans! I had Anna and I was finally relaxing and realizing that life can be great. At that moment, I made the decision that I was excited to face this new challenge and I was going to prevail to the best of my ability. With Anna by my side, this would be an exciting adventure... and you know what, that is exactly what happened:
Part 3. Transplant:
“Okay”, the Docs said to me, "You need a heart transplant or you will die. But, you still may die even though you need the transplant. If your blood is a rare type, if you have any sensitivities, if your other organs are failing, if we think you will not comply with the antirejection meds, if you will not have a robust support system, if you will not live the cleanest of lives, if you will not appreciate this gift, etc. you will not be considered for transplant. While I was in the hospital, they started the transplant work-up.
You need to know something. I am a type A blood type. That is a "receiver heart" blood type. It is a blood type with a high degree of compatibility and success. While in the hospital I met many O blood types. Ironically, this generous blood type are "givers", but not "receivers". I met so many people, I mean really good people, who are O's and having a really hard time waiting for an organ. Last night, I changed my LinkedIn profile. I placed a copy of what I wrote below. I included some statistics on organ donation. I hope you might read it.
When I was discharged from Stanford in September, I was placed on a continuous IV infusion of the inotrope Dobutamine. This prioritized me as a 1B on "the list" and is a "bridge to transplant". The drug works miracles and I was basically asymptomatic (no symptoms) and able to do fun things with Anna, family and friends. The only pitfall of the drug is that it has a 50% morbidity rate after 6 mos. and a 100% death rate after 1 year. :) I was fully committed with no “exit strategies” other than transplant.
It is interesting and a little unnerving to go to sleep and wake up knowing you might get "the call" at anytime. On the Sunday morning after Halloween (November 1st), about 2 months after being listed, my phone suspiciously rang at 8:00 am from a 650 area code.
The Doctor on the other line was a thoughtful, brilliant cardiac surgeon who had recently arrived from Japan: A quiet and kind Japanese voice said, "ahhh... helloooo.. this is Mista Ryan?" YES. "oh...ohhh... k... wondaful... okaaaay.... Meesta Ryan I have tooooo questions fo you to day" OKAY. "Wondaful... question numba one, you want new heart toooday?" UMMMM, YES. "Ohhh varrrry good. Question nummmba two, how long for you to be at Stanford?" AHHH 2 HOURS? "Ohhhh perfect. You be here ok? We have most beautiful heart for you. Today, you get the new heart, I seee you soon".
Well, that was the moment that it was time to be cool. I took one look at Anna and she knew. We grabbed the "transplant plan" book and flipped to "Plan A". I called MarcAir and we were on the ground at Palo Alto Airport in an hour and a half. Anna and I had pre-driven her Subaru to the airport and it was awaiting us. We arrived at the airport, reported to the hospital and were rushed into blood tests.
Here is how a heart transplant "goes down":
As I arrived at Stanford, a transplant team was speeding to the donor hospital to physically view the new donor heart, while a team here was evaluating me and many other factors. Although my "sensitivities" and any physical unsuitability of the new heart were both unknown at this time, I was being prepped for surgery. It is about this time that you must dispense with any modesty or self-conscious body issues you might have. It is going to be "naked city" moving forward and you are now a slightly sophisticated lab rat.
I understood that moving forward, “what was to be would be”. I was pretty calm and ready for the new challenges this day was to provide. One really disconcerting thing about being awake while being in the surgery room is that I spotted this 8 ft. by 12 ft. recessed area that seemed to have every torture device invented by man staged behind sliding glass doors. There were saws mounted on rib stabilizers, drills, chainsaw looking things... My "cool under pressure" approach was seriously tested at that moment. The process becomes like a watching a really intense movie... the only thing of it is - you are the main character, but it is not a movie! :)
I was joking with the surgery team, who were basically Super Cool Asian Ninja's. I was not sedated at this point and almost expected ACDC's "Thunder Struck" to start playing in the operating theater at any moment. These guys were like Top Gun Jet Pilots. Some of them were sitting with their heads in their laps focusing on "their game", moving their heads around as if they were rehearsing jet acrobatics in their minds eye. Others were joking with me and the star of the show (Dr. Ha) a really young looking chief surgeon was resting in a nap room. I had the impression that this was not his first ultra-high-risk cardiac surgery of the day.
As I was slipping away with the anesthesia, I went to sleep imagining Dr. Ha valiantly walking down the barren Sunday morning surgery halls of Stanford dressed in full-black surgical scrubs with dark slicked back hair and sunglasses on, the gun from Terminator in one hand and a scalpel in the other. With each confident step, the opening riffs of Thunderstruck were playing at max volume, echoing throughout the empty hospital corridors. Walking into the surgery theater, Dr. Ha would load the shotgun with one hand and twirl the scalpel “Iron Chef Style” with the other hand. Smoke than raised behind him and he uttered something like, “Were gonna kill this… ooops, I mean it’s Ninja Time!” I may have been feeling the anaesthesia at this point and my story may be slightly off, but one thing a did know was I was in the solid, confident hands of an absolutely cohesive team.
I woke up with a hose down my throat (incubated). This is uncomfortable. However, to be totally honest, the most horrific part of this field trip into the depths of self-control was not the feeding tube, or the 4 chest tubes, or the multiple tubes into the dead center of my new heart, or the breathing tube. The single most daunting and horrific aspect of the surgery (for me) is the tube in the penis. Tubes are not meant to be put into penises. Vagina's fine. Penises no. If this is a double standard - I do-not-care! When Eddie, my Filipino nurse wretched that foot long hose from my penis, I rang out like a soprano diva.
So that is a transplant: Sweet Japanese guy calls you, distracted plane ride over Big Sur, getting naked, prodded and probed, losing all inhibitions and becoming a lab rat, Asian Ninja Surgeons listening to Thunder Struck while you fade away and waking up with 14 tubes in your body, one of which is soon to be pulled out of your penis by Eddie the Filipino Nurse, while you sing Moon River in a pitch, ringing out to the delight of Canines througout the Northern Hemisphere.
What fun! You see, this really was "a prize". Thanks for putting me in the game coach! It was a novel and drastic departure from my prior experiences. It is a surprise that they don't offer, "elective heart transplants". If they do in the future, I will be first in line to ride again!
All joking aside and in case somebody who needs a transplant is reading this: A transplant is not hard. Just lie back, let it go and watch the show! The medical stuff is completely controlled and the staff has every available counter measure in case there are any complications. Stanford’s protocols are conservative and successful outcomes are almost guaranteed. It is essential that I share this as I read all these whiners saying how difficult a transplant is. That is not true. It is fast and easy and will change your life. Please keep this in mind and don’t read that other stuff.
Part 4. Epiphany:
I am infinitely grateful that I have been given the gift of life. I may never know who my donor is, but a day will not pass without me thinking of him/her. I have this lifetime to make up this gift to the donor, Anna, supportive family and friends, Stanford staff and try to figure out what just happened.
I love everyday and the people I meet. I see the world with complete wonderment and awe. It doesn't matter at all, if I only live a few months with this new heart, those months will be an incredible spectacular journey. Life is so great and I am so happy to share it with you!
Part 5: Epilogue:
I guess I am now the proud member of one of America’s most ultra-exclusive clubs: I actually am the guy Tony Bennett is singing about in his 1963 Grammy Award Winning hit, “I Left My Heart in San Francisco” - Awesome.
PS - 12/31/15 - If you are a transplant candidate email me through my www.linkedin.com/in/ryancomerford and I will tell you what to expect. I have truly enjoyed this process. I am almost two months post tranplant and feeling AMAZING! The challenges are surmountable and the surgery and recovery are not hard, just "one step at a time". Sure, there may be complications, but I will face them. Sure, I will probably die someday, but so will you (whoever is reading this)! But, I expect I will live to be very old and "do Stanford a solid" by setting longevity records for their Transplant Program. You too might live to be as old as me if you eat your spinach!
We have either been living in the hospital or this little Cabana for 2 months and something that makes me happy is that I realized I am not attached to the luxury of my house and that I am fine anywhere, doing anything and that is liberating. I used to be afriad that one day I might lose everything I had worked for if my house was ever destroyed. Now I have realized, I just don't care. :) I have also realized how much I enjoy making the most of whatever I am thrown. It is like a game of maximizing quality of life under all circumstances. I have been surprised to learn that I am basically the same "amount of happy" no matter what the circumstances, where I am or what I am doing.
Sincere and Grateful Thanks and Appreciation,
Ryan.
11/07/15 18:08
Ryan's new LinkedIn Job Profile:
Donor Heart Transplant Recipient
November 2015 – Present (1 month)
Stanford, California
I was given the gift of life on November 2, 2015 at approximately 0200 when I received a new heart at Stanford Medical Center. I think my new job may be to live a generous life and promote organ donation:
In the US, there are not enough organs to serve the need. 1 in 3 (22 people/day) waiting for an organ will die due to a shortage. I have been in the hospital with folks who will not make it and they are wonderful people. These deaths should not be happening.
There is a myth that organ donors are not treated, as aggressively in an emergency room as non-donors - this is not true. However, these two facts are very true:
1. As I write this, 122,691 people, full of hope are praying for an organ because they want to continue to live and there are not enough organ donors to satisfy that need.
2. A singe donor can save 8 lives and if more people signed up to be organ donors, everyone would receive the organ and nobody would be denied life.
Can you please become an organ donor now by registering at registerme.org ? If you think about it, you will leave the greatest legacy of all by saving many lives. I am completely thankful to my donor and his or her family for allowing me to live.
PRE TRANSPLANT:
POST TRANSPLANT:
Thank you!
Ryan and Anna
Ryan' Story:
Hi everyone! Here is the story of my heart transplant. I am writing this from the ICU, 4 days after transplant (Nov. 6, 2015):
Part 1. Realization:
In 2013, a friend suggested I have a physical at Stanford Hospital in Palo Alto. I soon learnt that I had inherited a genetic disease from my Mom called Laminopathy. For me, I had inherited a "perfect storm" of cardiac diseases including aggressive terminal heart failure, chronic atrial fibrillation and various arrhythmias. "Sudden Cardiac Death" was the only symptom of my disease. In August of that year, it was somewhat surreal when I had a pacemaker implanted.
In 2014, I started to show serious symptoms. I became very weak and it was becoming difficult to walk, breath, sleep and generally function.
It was at this time that my Stanford Team started to throw around the word "heart transplant". If having a pace maker at 38 was a surreal concept, having a heart transplant at 41 was completely overwhelming.
Part 2. Support:
I think now is a good time to say that this would literally not be happening without Anna. When I say, "not happening", I mean I would die. Not only has Anna shown the most incredible resolve and enduring loyalty, love and support, but also she has been a perennial force of nature in every aspect of my life.
The incredible cardiac staff at Stanford is burdened to choose who will receive a life-giving organ. They told me on more than one occasion that Anna's unfaltering support reflected in her attitude and the fact that she took out her laptop at every meeting and took meticulous notes were a factor when they chose me.
In June 2015, Anna and I had planned a trip to Italy to ask Anna to marry me. The Docs made the choice to hold off sharing that they had made the decision that I needed a transplant so that I could ask Anna. In Italy, Anna said “yes” and I am forever in their debt, as we were engaged on June 8th, 2015.
When we returned, we were scheduled for a routine clinic visit. At that visit, the Doc's shared that my cardiac output was the most dramatically and profoundly low that they had ever witnessed. They were shocked I was on my feet and immediately admitted me. I lost 20 pounds of water (hard for a weak heart to clear water) in a few days through diuresis and they started to fine-tune my meds.
The Docs asked to meet with Anna and I. It was then that they asked, "How long do you think you will live?” I responded completely shocked, "Hmmmm... I don’t know, many years?". The Docs retorted, "You will not make it a year".
Well, that was annoying. I had plans! I had Anna and I was finally relaxing and realizing that life can be great. At that moment, I made the decision that I was excited to face this new challenge and I was going to prevail to the best of my ability. With Anna by my side, this would be an exciting adventure... and you know what, that is exactly what happened:
Part 3. Transplant:
“Okay”, the Docs said to me, "You need a heart transplant or you will die. But, you still may die even though you need the transplant. If your blood is a rare type, if you have any sensitivities, if your other organs are failing, if we think you will not comply with the antirejection meds, if you will not have a robust support system, if you will not live the cleanest of lives, if you will not appreciate this gift, etc. you will not be considered for transplant. While I was in the hospital, they started the transplant work-up.
You need to know something. I am a type A blood type. That is a "receiver heart" blood type. It is a blood type with a high degree of compatibility and success. While in the hospital I met many O blood types. Ironically, this generous blood type are "givers", but not "receivers". I met so many people, I mean really good people, who are O's and having a really hard time waiting for an organ. Last night, I changed my LinkedIn profile. I placed a copy of what I wrote below. I included some statistics on organ donation. I hope you might read it.
When I was discharged from Stanford in September, I was placed on a continuous IV infusion of the inotrope Dobutamine. This prioritized me as a 1B on "the list" and is a "bridge to transplant". The drug works miracles and I was basically asymptomatic (no symptoms) and able to do fun things with Anna, family and friends. The only pitfall of the drug is that it has a 50% morbidity rate after 6 mos. and a 100% death rate after 1 year. :) I was fully committed with no “exit strategies” other than transplant.
It is interesting and a little unnerving to go to sleep and wake up knowing you might get "the call" at anytime. On the Sunday morning after Halloween (November 1st), about 2 months after being listed, my phone suspiciously rang at 8:00 am from a 650 area code.
The Doctor on the other line was a thoughtful, brilliant cardiac surgeon who had recently arrived from Japan: A quiet and kind Japanese voice said, "ahhh... helloooo.. this is Mista Ryan?" YES. "oh...ohhh... k... wondaful... okaaaay.... Meesta Ryan I have tooooo questions fo you to day" OKAY. "Wondaful... question numba one, you want new heart toooday?" UMMMM, YES. "Ohhh varrrry good. Question nummmba two, how long for you to be at Stanford?" AHHH 2 HOURS? "Ohhhh perfect. You be here ok? We have most beautiful heart for you. Today, you get the new heart, I seee you soon".
Well, that was the moment that it was time to be cool. I took one look at Anna and she knew. We grabbed the "transplant plan" book and flipped to "Plan A". I called MarcAir and we were on the ground at Palo Alto Airport in an hour and a half. Anna and I had pre-driven her Subaru to the airport and it was awaiting us. We arrived at the airport, reported to the hospital and were rushed into blood tests.
Here is how a heart transplant "goes down":
As I arrived at Stanford, a transplant team was speeding to the donor hospital to physically view the new donor heart, while a team here was evaluating me and many other factors. Although my "sensitivities" and any physical unsuitability of the new heart were both unknown at this time, I was being prepped for surgery. It is about this time that you must dispense with any modesty or self-conscious body issues you might have. It is going to be "naked city" moving forward and you are now a slightly sophisticated lab rat.
I understood that moving forward, “what was to be would be”. I was pretty calm and ready for the new challenges this day was to provide. One really disconcerting thing about being awake while being in the surgery room is that I spotted this 8 ft. by 12 ft. recessed area that seemed to have every torture device invented by man staged behind sliding glass doors. There were saws mounted on rib stabilizers, drills, chainsaw looking things... My "cool under pressure" approach was seriously tested at that moment. The process becomes like a watching a really intense movie... the only thing of it is - you are the main character, but it is not a movie! :)
I was joking with the surgery team, who were basically Super Cool Asian Ninja's. I was not sedated at this point and almost expected ACDC's "Thunder Struck" to start playing in the operating theater at any moment. These guys were like Top Gun Jet Pilots. Some of them were sitting with their heads in their laps focusing on "their game", moving their heads around as if they were rehearsing jet acrobatics in their minds eye. Others were joking with me and the star of the show (Dr. Ha) a really young looking chief surgeon was resting in a nap room. I had the impression that this was not his first ultra-high-risk cardiac surgery of the day.
As I was slipping away with the anesthesia, I went to sleep imagining Dr. Ha valiantly walking down the barren Sunday morning surgery halls of Stanford dressed in full-black surgical scrubs with dark slicked back hair and sunglasses on, the gun from Terminator in one hand and a scalpel in the other. With each confident step, the opening riffs of Thunderstruck were playing at max volume, echoing throughout the empty hospital corridors. Walking into the surgery theater, Dr. Ha would load the shotgun with one hand and twirl the scalpel “Iron Chef Style” with the other hand. Smoke than raised behind him and he uttered something like, “Were gonna kill this… ooops, I mean it’s Ninja Time!” I may have been feeling the anaesthesia at this point and my story may be slightly off, but one thing a did know was I was in the solid, confident hands of an absolutely cohesive team.
I woke up with a hose down my throat (incubated). This is uncomfortable. However, to be totally honest, the most horrific part of this field trip into the depths of self-control was not the feeding tube, or the 4 chest tubes, or the multiple tubes into the dead center of my new heart, or the breathing tube. The single most daunting and horrific aspect of the surgery (for me) is the tube in the penis. Tubes are not meant to be put into penises. Vagina's fine. Penises no. If this is a double standard - I do-not-care! When Eddie, my Filipino nurse wretched that foot long hose from my penis, I rang out like a soprano diva.
So that is a transplant: Sweet Japanese guy calls you, distracted plane ride over Big Sur, getting naked, prodded and probed, losing all inhibitions and becoming a lab rat, Asian Ninja Surgeons listening to Thunder Struck while you fade away and waking up with 14 tubes in your body, one of which is soon to be pulled out of your penis by Eddie the Filipino Nurse, while you sing Moon River in a pitch, ringing out to the delight of Canines througout the Northern Hemisphere.
What fun! You see, this really was "a prize". Thanks for putting me in the game coach! It was a novel and drastic departure from my prior experiences. It is a surprise that they don't offer, "elective heart transplants". If they do in the future, I will be first in line to ride again!
All joking aside and in case somebody who needs a transplant is reading this: A transplant is not hard. Just lie back, let it go and watch the show! The medical stuff is completely controlled and the staff has every available counter measure in case there are any complications. Stanford’s protocols are conservative and successful outcomes are almost guaranteed. It is essential that I share this as I read all these whiners saying how difficult a transplant is. That is not true. It is fast and easy and will change your life. Please keep this in mind and don’t read that other stuff.
Part 4. Epiphany:
I am infinitely grateful that I have been given the gift of life. I may never know who my donor is, but a day will not pass without me thinking of him/her. I have this lifetime to make up this gift to the donor, Anna, supportive family and friends, Stanford staff and try to figure out what just happened.
I love everyday and the people I meet. I see the world with complete wonderment and awe. It doesn't matter at all, if I only live a few months with this new heart, those months will be an incredible spectacular journey. Life is so great and I am so happy to share it with you!
Part 5: Epilogue:
I guess I am now the proud member of one of America’s most ultra-exclusive clubs: I actually am the guy Tony Bennett is singing about in his 1963 Grammy Award Winning hit, “I Left My Heart in San Francisco” - Awesome.
PS - 12/31/15 - If you are a transplant candidate email me through my www.linkedin.com/in/ryancomerford and I will tell you what to expect. I have truly enjoyed this process. I am almost two months post tranplant and feeling AMAZING! The challenges are surmountable and the surgery and recovery are not hard, just "one step at a time". Sure, there may be complications, but I will face them. Sure, I will probably die someday, but so will you (whoever is reading this)! But, I expect I will live to be very old and "do Stanford a solid" by setting longevity records for their Transplant Program. You too might live to be as old as me if you eat your spinach!
We have either been living in the hospital or this little Cabana for 2 months and something that makes me happy is that I realized I am not attached to the luxury of my house and that I am fine anywhere, doing anything and that is liberating. I used to be afriad that one day I might lose everything I had worked for if my house was ever destroyed. Now I have realized, I just don't care. :) I have also realized how much I enjoy making the most of whatever I am thrown. It is like a game of maximizing quality of life under all circumstances. I have been surprised to learn that I am basically the same "amount of happy" no matter what the circumstances, where I am or what I am doing.
Sincere and Grateful Thanks and Appreciation,
Ryan.
11/07/15 18:08
Ryan's new LinkedIn Job Profile:
Donor Heart Transplant Recipient
November 2015 – Present (1 month)
Stanford, California
I was given the gift of life on November 2, 2015 at approximately 0200 when I received a new heart at Stanford Medical Center. I think my new job may be to live a generous life and promote organ donation:
In the US, there are not enough organs to serve the need. 1 in 3 (22 people/day) waiting for an organ will die due to a shortage. I have been in the hospital with folks who will not make it and they are wonderful people. These deaths should not be happening.
There is a myth that organ donors are not treated, as aggressively in an emergency room as non-donors - this is not true. However, these two facts are very true:
1. As I write this, 122,691 people, full of hope are praying for an organ because they want to continue to live and there are not enough organ donors to satisfy that need.
2. A singe donor can save 8 lives and if more people signed up to be organ donors, everyone would receive the organ and nobody would be denied life.
Can you please become an organ donor now by registering at registerme.org ? If you think about it, you will leave the greatest legacy of all by saving many lives. I am completely thankful to my donor and his or her family for allowing me to live.
PRE TRANSPLANT:
POST TRANSPLANT:
Organizer
Anna Jelks
Organizer
San Luis Obispo, CA
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