Post Transplant Depression — It’s Real and it’s Treatable


Early in July of 1995 I collapsed in a parking garage, got up, dragged myself to the car and drove to an emergency room.  After a Battery of tests I was told I had dilated cardiomyopathy and would someday need a heart transplant.  In simple terms cardiomyopathy is a weakening of the heart muscle that causes it to pump out less blood.   The less it pumps out, the more it retains and the more it retains the bigger it gets.   As your pumping capacity goes down the heart is forced to store more blood so it grows even more.  Finally, when the pumping function is almost negligible and the heart can’t grow any more you die.  It is called end-stage cardiomyopathy and it took me 12 years to get there, 12 years of continuous declining health, 12 years of knowing I was dying, 12 years of worrying about it. And…I was 12 years older, 68, and that doesn’t help when you need a heart transplant. 

Does that sound depressing?  Well it was but it was nowhere near as depressing as what I suffered after the transplant. “So,” you say, “Why would you be depressed after a transplant, you just got a new lease on life you should be happy.”  And if you said that, you’d be right, we should be happy but a very large number of transplant patients aren’t.  Some even become suicidal. It wasn’t until four years after my transplant that I was finally free of depression. 

Before we discuss why transplant patients get depressed, let’s talk a about what depression is, how to identify it and how can affect your life.  Clinical depression can affect every part of your life…your ability to sleep, eat, work, and get along with others can be severely affected.  Depression can ruin self-esteem and turn simple tasks like getting dressed and taking a shower into major struggles.  People who suffer from depression can lose interest in things that used to excite them and put a dark and gloomy cloud over everyday life.  It cannot be willed away and you can’t ignore it.  There’s a lot that can be done to treat depression but the first step is to admit that you have a problem and that is not always easy.  Depression like other diseases has symptoms which include:

  • Decreased energy, fatigue
  • Loss of interest in things that were once enjoyed, including sex
  • Insomnia or sleeping too much, not wanting to get up
  • Loss of appetite, or overeating
  • Feelings of hopelessness
  • Pessimistic about most things
  • Feeling helpless and worthless
  • Thoughts of death or suicide, or suicide attempts

If you have any of these symptoms you should get immediate medical attention but if you are still not sure, take this on-line test as a kind of second opinion.  http://www.mayoclinic.com/health/depression/MH00103_D

Back to transplant patients and depression.  I can only speak for myself but I have spoken with many transplant patients who have shared in my experiences.  When I awoke after transplant surgery and the anesthesia wore off I felt a euphoria that defies description.  Maybe it was realizing that I had survived the surgery or maybe it was the pain killers and residual effects of the anesthesia but I had this feeling of complete and total relief.  If one can really achieve serenity I had at that moment.  I have not experienced anything like it since.  It didn’t last very long. 

Anyone who knew me prior to my surgery will tell you that I have always been very outgoing, friendly, upbeat, optimistic and full of energy.  That was my natural state but heart transplant surgery and the events surrounding it changed all that.  After 9 days in the hospital I was released to go home but I was very weak, had little or no energy, and felt like I was no longer of any use to anyone.  I had energy, no appetite, no sense of humor, no personality … nothing.  All I wanted to do was sit in my recliner in a dark corner of our family room and watch TV.  Well, watch is the wrong word, the TV was on and I was aware of it but I couldn’t concentrate on anything long enough to get interested in it.  That recliner became my home off and on for almost two years. 

Each day as my physical health improved I went through the motions of living but without enthusiasm and always with a feeling of impending doom.  I attributed some of my mood to being forced to retire from a profession I loved which meant I was no longer able to support us.  For the first time since I was ten years old I didn’t have a job and felt too old and useless to get one.  I did everything my doctors advised; physical therapy, watched my diet, tried to get exercise, tried to live a normal life but deep down I just didn’t give a damn.  I wasn’t suicidal I was just a kind of zombie.

My wife, Robin, was running two of her own businesses at the time and made tremendous sacrifices to help me recover including trying to involve me in her business by giving me simple and easy jobs to do but I wasn’t interested.  I owed her my interest and should have helped her because I was capable of doing what she wanted but I preferred feeling sorry for myself while sitting in my dark corner with the flickering images of an unwatched TV set changing the room’s shadows.

While I was being treated for depression, it seemed as though none of the medications really worked very well.  Some would give me a lift for a few weeks but almost always would fail and I’d be back in my recliner.  I finally got to the point where I believed I was as good as I was going to get.  Enter a new therapist.

 At my clinic a change in staff resulted in my being assigned a different therapist.  At the time I thought nothing of it because I didn’t think there was any hope of ever really feeling good.  Wrong!  She tried a couple of new medications and then all of a sudden things changed.  I felt like a new man, I was my old self…better than my old self, I felt reborn and began living again, doing all the things I used to enjoy but enjoying them even more.  It took a little over four years after my transplant to begin living again but it was worth the wait.  Incidentally, after trying several drugs and combinations of drugs the one that finally worked was an old one…Remeron.

Post-transplant depression, I understand, can be caused by many factors known and unknown.  Two of the most obvious factors are 1) survivors guilt (someone had to die before I could get a transplant), 2) I’m undeserving or, “Why me?” (There are so many younger, sicker people who should have gotten my organ)

Whatever the reason for the depression the fact is that help is available it just may not be immediate.  I now know that you cannot give up, you must fight every inch of the way until you get relief.  It is not normal to feel down, useless, unimportant and insignificant every waking moment of every day.  It just isn’t normal so don’t accept it.  Find help.  I’m really enjoying life again.  You can, too.

Helpful links

Supporting a family member or friend http://www.mayoclinic.com/health/depression/MH00016

Post transplant depression http://surgery.about.com/od/ingandsurgery/a/TransplantCope.htm

All about Depression http://www.allaboutdepression.com/gen_01.html

Consider what I’ve written, discuss it with friends, join discussions on Facebook’s Organ Transplant Initiative and comment in the space provided here.  When you have decided what you think is the best solution to the organ shortage contact your elected representative or U.S. Senator and let them know your feelings.  Change has to begin somewhere, why not with you?

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Posted on January 29, 2012, in Post Transplant Depression and tagged , , , , , , , , . Bookmark the permalink. 12 Comments.

  1. Hi bob, thanks for sharing your story. My entire family is extremely worried about my sister. She had a pancreatic transplant three months ago. She suffered from depression before the transplant but mess seemed to keep it in check. They aren’t working at all now. She is a mess. The transplant team doesn’t seem to know what to do and sent her to her gp. Was your therapist part of your transplant team?

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    • Sorry it took so long to respond but I’ve had a very serious bout with bronchitis and was incapacitated for quite some time. Yes my psychologist was part of the transplant team. If you aren’t getting satisfaction there go somewhere else immediately. Depression can be treated but it takes committed professionals, a committed patient with a good support system and a lot of trial and error. I’m living proof that doing it right works.

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  2. Georgette Bensimon

    Hi,
    Thank you for sharing this precious information.
    After 12 years of dialysis, I got a kidney. It was a miracle. Euphoria for 2 years but then sibling problems after our mother’s death sent me in depression. I blamed that state on the family problems I was living. I now realise that it was just the catalist and my depression would probably have happened anyway. Serious insomnia, lack of joy, no interest in anything (music used to cheer me up, no longer), self-esteem in the gutter, memory loss…It is scary. I would prefer not to have to take more medications but if I must… has anyone tried any natural remedies?

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  3. I’ve tried every medication in the book but I think I’ve found the solution. Medication wise it is Remeron. It turned me around completely. Coupled with that is finding an interest and developing it. I have two; organ donation and woodwork. Whenever I start to feel a little down I either turn to my computer to do research on donation/transplantation issues or head to my workshop to make something….anything at all to keep my mind occupied. I believe the biggest contributor to my depression is physical and mental inactivity. Remeron and hobbies…that’s what works for me.

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  4. Wow! Amazing story! Such an inspiration! How are you treating your depression? I had severe depression years ago and tried magnetic therapy. It worked great. Talk with your doctor, first, of course, but might be something good for you to use.

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  5. I am the same as you two and no doubt many others, I don’t talk about how i feel and have felt over the years for fear of seeming so ungrateful and when you have fellow Transplant friends who are poorly or no longer wih us the burden seems even heavier at times. It’s hard work coming out of a transplant, the emotions would send any sane person cuckoo, let alone someone on the verge of death. The thought of death surrounded me before my transplant and even more so now. Theresa x

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  6. Bob – What an articulate and honest post! I got it via facebook, from one of my Nurses! I struggle terribly, and am aware I do…But am afraid to appear ungrateful to my donor, Transplant team, and loved ones!! (Who have all been WONDERFUL during my recovery and new “start”.) I keep a blog, and only tend to post upbeat stuff as I do not feel my “lows” are really that interesting to readers, BUT after the dramatic effect this has had on me..I think I will also share MY lows and experiences, and I am SO pleased and relieved to know that I am not alone in this!!!!….Best Wishes, Matt.

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