From the Bottom of My New Heart

Submitted by: Mike Spindell, guest blogger

For the first time I am writing a guest blog with a blatant message supporting a cause that you might say is near and dear to my heart.  I hope Professor Turley excuses this personal usage of my guest blogging
privileges, as hopefully will my fellow guest bloggers. Here is my pitch. Some regulars here at the Turley blog know that I am a heart transplant recipient. I received my new heart in October 17, 2010, two days after the birth of my third grandchild. I am, needless to say, an extremely lucky man. My nuclear family all had heart issues. My parents both died at the age of 54 from heart attacks (Myocardial Infarctions {MI’s} as they’re known in the trade). It was my mother’s fourth or fifth and came as a result of her third stroke. When my father died, the requisite autopsy found that this was actually his second MI. My older brother has also had a severe stroke and an MI, but thankfully he is doing quite well today at age 75.

The main reason I am alive today, beyond the fact of my heart transplant, is because my wife during the worst stages of my illness, literally saved my life four times. Her love, care-giving, watchfulness and fierceness in ensuring my medical care, pulled me through very difficult times. We married thirty years ago when I was thirty-seven and six months later I suffered a massive MI, literally destroying one of my three main arteries. Unlike me, she had never experienced the severe illness of someone close, so this transition was obviously shattering but she saw me through. I guess you could say that there is a certain resiliency about me because I was to have two more MI’s at five year periods and yet was able to recover from them and work productively. However, seven years ago at age sixty, in the prime of my profession; I developed Congestive Heart Failure (Cardio Myopathy) and was forced to retire.

What I had was a progressively degenerating condition, where my heart was gradually becoming too weak to be able to pump my blood. Yet by losing weight and living healthy I was able to stave off the inevitable until the winter of 2009. My Cardiologist let me have it straight and told me I’d better get on a heart transplant list, or I wouldn’t have much time left. I was first seen at The University of Miami/Jackson Hospital in March of 2010. Two months later I was hospitalized with Ventricular Tachycardia (VTac) after flat-lining in my living room. I recovered after three weeks hospitalization and on June 1st, 2010 I was officially put on the UNOS Heart Transplant List.

UNOS is the organization that deals with all transplants country wide and ensures that the organs are distributed fairly to those in need. However, by August I was dying. I had no strength and I kept losing weight no matter what I did to keep it on. I was scheduled to go into the hospital to get what is known as an LVAD (Left Ventricular Assist Device). Since the left ventricle of my heart was virtually dead, this device replaced its function and kept me alive. Coincidentally, Dick Cheney received the exact same device, the HeartMate II LVAD about two weeks prior to this time. Given my distaste for him, it was yet comforting to know that he had gotten it, because obviously he receives the best medical care.

With the device implant scheduled for early August I was told to sign into the hospital a few days before the scheduled date and surprisingly was told the next day that a heart was available. I was prepped for surgery and for the next fourteen hours my wife and I waited expectantly for the operation, hope, fear, tension and anxiety making us emotionally exhausted. The operation had been scheduled for 8:00 AM, but that time came and went with no word. Finally, at 11:00 AM, we were told that the operation was not to be for technical, legal reasons dealing with the donor. The effect upon us was devastating, but I have to honestly say that feeling the worst of it fell to my wife, my love and my caregiver. You can’t understand unless you’ve experienced it, that being on the verge of death from non-traumatic causes is modulated by a state called “reverie” where your mind slows down. This could be due to lack of oxygen, or some other physical means that is hardwired into us. Given this, the burden of this sudden disappearance of hope fell on my wife and I can’t even begin to imagine what she went through, yet while at the same time being able to look after and minister to me.

The LVAD was implanted a few days later and for the rest of the month I was in the hospital rehabbing and learning to live with this device. With a LVAD there is a power cord in your abdomen that must either be connected to an external powering device, or to a set of heavy batteries. You literally can’t live without external power. Give my extremely physical weak state prior to the operation, rehab was not an easy process. Learning to switch to batteries and back within a two minute window is hard and initially fills one with dread. Nevertheless, my wife and I mastered the process, which included her learning to change my dressings over the abdomen tube regularly to prevent infection. I made it home by September and must admit that as the days passed I began to despair about ever receiving a transplant.

I was approaching age 66 rapidly, utilizing the LVAD was difficult (imagine the process of going to the bathroom in the middle of the night attached to a 10 foot cord in your belly) and  despite my wife’s best efforts, I was feeling uncharacteristically depressed.  Miraculously in mid October we were awakened by a call from The University of Miami/Jackson Transplant Center and told there was a heart available for me. We needed to be in Miami in two hours and the drive itself is one hour at full speed. Since I hadn’t been allowed to drive since my condition had deteriorated in May, my wife had driven there and back too may times to count. We made it and the following day I received my heart transplant, recovery from which is no walk in the park. In fact after I came out of the operation I was in a psychotic state induced by one of the medications used during transplant, combined with morphine for the pain. I couldn’t speak because I was Enturbated and my wife and daughter had to deal with my psychotic belief that the hospital staff was trying to murder me, after they had just saved my life. When I refused pain medication after two days, the psychosis abated and I could begin to let some of the joy of my new life begin to take effect.

I’ve far simplified the experiences I’ve gone through; to really detail it might well take a book. Today, I am healthier than I’ve been in perhaps 20 years. My wife and I have recovered somewhat from the PTSD like state that people normally get going through an experience like this and our lives get progressively more fulfilling than they’ve been for years. My gratitude to my magnificent Heart Surgeon Dr. Si Pham, Chief of the UM/Jackson Heart Transplant Center is boundless. He is perhaps the most unpretentious, yet powerfully charismatic human being that I have ever met. He is quintessentially all that we hope for in a Physician. His 5:00 AM calls to the intensive care nurses for his patients vitals, giving followup instructions based on the results, even when on vacation, indicates his dedication to his patients and his work. I would say categorically that he is perhaps the most impressive human being I have ever met. I feel the gratitude also to the entire staff of the University of Miami/Jackson Transplant Team, that are as good as in any like facility in the nation statistically, but don’t get the equal credit that other more prestigious institutions receive.

The overwhelming bulk of my gratitude must go to the unknown donor and his family, whose strong heart now beats within me. I know nothing of this donor save that he was a 26 year old man, of approximately my height and build. I am working through an agency that will anonymously contact his family to see if they are willing to receive my personal letter of gratitude, now that some time has passed for them to begin to have processed their own heavy grief. That he and they were willing to allow this life saving donation, at a time for them which must have been tragic, is a testament to their humanity. It is to recognize that humanity, coupled with my own blessings, that I am impelled to find some way to pay back for the gift I’ve received. This post is but a beginning. Below there are links that first give a excellent, short presentation of the case for you to designate yourself as a organ donor and following it are links that will allow you to do so.

As someone who has both commented frequently here through the years and is a guest blogger, many of you know who I am. If in any way I have connected with you on any level, even if it was in disagreement, please understand that I would have been dead a year and a half ago without the blessing of this donation. I implore you the to consider putting yourself on the list as a potential organ donor and perhaps save someone’s life. It could well be the ultimate gift of your life.

An excellent video briefly explaining the need for donors:

http://www.youtube.com/watch?v=ifyRsh4qKF4&feature=youtube_gdata_player

Other links that can help you get involved in this.
 

http://www.unos.org/donation/index.php?topic=fact_sheet_9

http://www.thenationalnetworkoforgandonors.org/index.html

http://donatelife.net/register-now/

http://www.experienceproject.com/groups/Want-To-Encourage-Organ-Donation/56405

 Submitted by: Mike Spindell, guest blogger

37 thoughts on “From the Bottom of My New Heart”

  1. Mike, Thank you for the amazing story. I was on the blog at that time and awaited your wife’s updates. I am on the donor list. My father developed heart disease in his thirties and only managed to live until his fifties. The same was true of his father. My mother developed heart disease in her seventies but did not die of it. Stay healthy as you have so much to share.

  2. Thank you all for your kindness, I will have some response tomorrow, but football calls. Go Big Blue!

  3. Mike,

    Thank you for this most personal story. It’s stories such as yours that speak to people and will, I’m sure, encourage some to become organ donars.

    One of my oldest and dearest friends–a woman with whom I attended grammar school, high school, and college–has two sons. Both of her sons had to have heart transplants when they were in their twenties because of a genetic heart problem passed on by some of the females in her family to their sons. One of her sons now needs to have a second transplant because his heart is failing. We are hopeful that he’ll be able to find a donor heart soon.

    Stay healthy–and happy with that amazing wife of yours!

  4. puzzling:

    I did not think that is what you were saying. I was just asking how you would be able to control the very real possibility of corruption in a process that required a living being for supply. It is my understanding that you cannot take an organ from someone who is actually, truly, sincerely dead. And so my question about coma patients and head trauma victims.

  5. Bron,

    I’m not saying that people should be terminated for their organs. Hopefully the argument over donation becomes academic over the coming decades as regenerative medicine advances.

  6. Wonderful memoir Mike, and I’m sure the main reasons for the successful outcome was the special and loving relationship you enjoy with your wonderful spouse. I also sure another reason was the considerable space available in your anatomy for that donor heart. The first one, though deficient in some respects, was exceedingly large and made the way quite easy for its successor which seems to have grown to fill the space.

  7. Puzzling:

    Walter Williams says that if people own their bodies they should be able to sell their organs. I have read one or 2 essays which say that we would have more organs available if people were allowed to sell them.

    But selling organs does lead to some ethical considerations, especially concerning coma patients. Some do wake up so how do know if the person really is debilitated to the point they are just a lower brain stem with no cognitive function? It is a tough call to make, how do you ensure the process so that no ethical boundaries are crossed?

    I am all for a person being able to sell a kidney or a lung or even part of a liver, but a heart? I would be worried about people harvesting hearts from coma patients who might wake up or from accident victims who might recover. The kidneys, lungs and liver could be taken from living people who are of sound mind to enter into a contract. It would certainly increase the supply of available kidneys. But hearts are a different story and there could be much unethical behaviour on the parts of hospitals, doctors and next of kin depending on the value of the heart.

  8. Frankly,

    There is a shortage of egg donors for the same reasons, absurdly low compensation for the time and risk.

    These policies cost lives and shift transactions onto the black market where there are more risks for all parties. It’s just another form of Prohibition with very predictable consequences.

    If these policies aren’t enlightened we will simply see the market develop elsewhere, and medical tourism follow. One place to start is compensation for organs donated at the time of death.

  9. Already there but thanks for sharing this.

    Puzzling – sadly this is necessary because of the potential for organ farming. This has been seen already in third world countries where healthy people are selling kidneys and lungs for the equivalent of a couple years income. I wouldn’t put it past some folks to go all Sweeny Todd if the money were good enough

  10. Why does government insist that organs like a heart must be donated?

    Wouldn’t more people be willing to donate if they knew that their funeral expenses would be covered, or that their dependents would be left with some additional resources as compensation?

    There is a substantial need for donors that is not met in the United States. Government insistence on so-called altruistic motives by donors is costing lives.

  11. Mike, thank you for surviving, persevering, and telling us about it. You have an abundance of courage and resilience. So does your wife!

    I was a nurse and took care of transplant patients (corneal, kidney, liver). Seeing first-hand the care required, may I also honor the nurses who cared for you? ICU psychosis isn’t fun for the staff either!

  12. Yup, I’m on the list.
    Re “my psychotic belief that the hospital staff was trying to murder me”
    I’ve been there, and hope you find it funny in retrospect (assuming everyone else does.)

  13. Mike

    It’s an amazing and incredibly arduous journey you’ve travelled that brings you to write your blog today. We are all grateful to the same people you’ve mentioned for providing the crucial combination of love and science that allows us to experience and enjoy your always cogent thinking, quality writing and deep appreciation of life.

  14. Transplant technology is amazing. And getting better. Sad that it is so expensive, but as the techniques improve, costs will come down. The research into growing new organs in vitro was set back two decades by the Bush administration and religious right wing, but with the ability to use the best stem cells, will get back on track.

    A pox on the anti-science and anti-stem-cell-research crowd.

    As for you Mike; as Mr. Spock would say, “Live long and prosper.”

  15. Wow! Your wife is an angel and you are truly a pieve of work, from the inside out. (I mean that isn a very good way.) Your resilience and tenacity is astouding. I am very glad, from ‘knowing’ you here that you put up the fight you have and are continuing so we get to have you here; both in the posting and in the world.
    I wish that they would make donation opt out rather then opt in. (In Pa it is opt in, don;t know about elsewhere.)

  16. The effort, skill and resources used in giving you a new lease on life were all worthwhile investments, Mike. You weren’t done sharing your wisdom yet and if there is anything this world needs, it is more wisdom. Wisdom like recognizing and propagating the message about organ donor shortages. Some day, hopefully soon, growing new organs in a lab with be cheap, plentiful and readily available. Our science is almost there. But until it is, the need still requires addressing.

  17. Mike,

    It’s is amazing what modern medicine can do,
    as your personal experience confirms.

    I am glad that everything is working out for
    you and your family, as it must have been
    an incredibly stressful time.

    I look forward to your writings and the
    knowledge that you share with us, like
    yesterday’s recommended reading –
    The Authoritarians.

    Thanks

    Bud

  18. Mike,

    A very good friend of mine was the recipient of a donor kidney so, needless to say, I’m already signed up to donate my organs. I hope your new heart serves you long and well!

  19. An amazing and wonderful story Mike! Thanks for sharing it with us. I agree that signing up to be an organ donor is a wonderful gift that you can give while you are alive and that keeps on giving long after you are gone. You are blessed to be alive and your wife is a saint for being the caregiver during such difficult moments. You are a walking testament why everyone deserves high quality and affordable health care.

Comments are closed.