Never Give Up! Overcoming Adversity — My Story.


I am now five plus years post heart transplant but it took nearly four of those years to recuperate fully.  I was in poor health prior to the life-saving surgery so it shouldn’t come as any surprise that feeling “really good” took some time.

 

This blog has two points, the first how abusing my body brought me to need a transplant and the second is a note of encouragement to others, “Never give up!”

 

Here’s my story.  At age 15 I started smoking cigarettes.  At the time it was the thing to do, everyone smoked and some of the ads even suggested the habit was good for you.  For the next thirty seven years I inhaled up to four packs of cigarettes a day.  With the help of Nicorette gum I kicked the habit in 1991, but the damage had already been done.  I had Chronic Obstructive Pulmonary Disease (COPD) and asthma, maladies that make it extremely difficult to breathe with or without exertion.

 

At about the same age I began to drink alcoholic beverages.  Early on I didn’t think I had much of a problem, I drank only on weekends but I never knew when to quit.  One drink led to many which led to falling down drunk.  I went on that way for many years, sober during the week and on the occasional weekend I would get “plastered” (a term from my dad’s generation).  Then when I was about 33 years old something snapped and I began to drink every day.  Sometimes I drank up to two quarts of Vodka a day but never less than a pint of the clear almost odorless liquid.  Finally after ten years of this voluntary torture I admitted I had a serious problem and committed myself for a twenty-eight day treatment program.  That was in 1982 and I have been sober ever since.  The damage, though, had probably been done.  Not long after that I began having heart problems and was finally diagnosed with cardiomyopathy, a weakening of the heart muscle.  By 2007 I was in the end stages of the disease and at age 68 got a heart transplant at the Mayo Clinic in Jacksonville, Florida. 

 

I fully expected that recuperation from the surgery would take a few months.  I had no idea what I was in for and not through the fault of the great medical care I received.  My much abused body was a mess.  A couple of months after my transplant I got pneumonia which hospitalized me for a week and had me down and almost out for almost a month (obviously having COPD was of no help).  Then I developed severe pain, first in my left arm and shoulder (probably attributable to the awkward positioning of my arm during surgery.  The left arm is raised at a strange angle to allow the surgeon better access to the chest cavity).  The pain was intense and began to spread to my neck, my back and then the other shoulder.  Sometime the pain was so great I was almost totally immobilized, I slept in a recliner chair for months and often wept out of suffering and frustration.  Physicians tried several remedies but finally prescribed Oxycontin, a powerful narcotic.  After several months of physical therapy and other treatment the pain began to dissipate but my need for Oxycontin didn’t.  I was hooked, and severely depressed, so depressed that I spent everyday, all day sitting in the dark watching inane TV shows.  I wasn’t eating much either and lost 50 pounds.  I wasn’t suicidal but I sure wasn’t happy about living either.

 

Finally I convinced myself that I needed help so with the assistance of a drug called Suboxone, I was weaned from the Oxycontin and finally stopped taking it and the Suboxone after several months. 

It was now over a year since my transplant and I felt and looked terrible.  My usual upbeat attitude was gone and the only reason I got up in the morning was to take my anti-rejection drugs.  Some days I didn’t even shower.  I just got dressed, got some coffee and planted myself in my dark corner to watch TV for the rest of the day.  I was no longer taking narcotics but my depression was getting deeper.  I didn’t want to see anyone, talk to anyone or go anywhere.  I was becoming more and more reclusive but at least I recognized what was happening to me and once again called on the experts at Mayo.  Treating depression takes time and we had lots of fits and starts but finally my medical team found the right combination of drugs and slowly I saw the sun begin to rise and could once again hear the birds sing.  Life had returned to my mind and body.  Life I thought was over.  Mayo had worked another miracle and here I am today, optimistic again and feeling great.  Yes, I still have COPD but Mayo’s expertise has made that much more tolerable, too. 

 

Throughout this entire ordeal and for no obvious reason, I remembered Teddy Roosevelt’s quotation about “Never giving up.”  I didn’t — and thank God my wife Robin didn’t give up on me either.  She was always supportive, attentive, understanding and gently prodding me to go on.  I don’t think — no, I know, I would not have survived without her.

 

I have been reborn and given another chance but I think my gift of life came with a trial, a test of my will, my relationships, my marriage and my natural optimism.  I think I have passed the test.  I didn’t give up but I didn’t do it alone either. 

 

Why did I tell this story?  I know that others who have had serious illnesses also face challenges, some far worse than mine.  I also know, though, that attitude and drawing on all your resources (spouse, friends, family, prayer) can help you cope and improve your quality of life.

Please, if you are suffering, don’t give up.  There is help for you but you have to reach out and ask for it.  I still sit in the same corner every day, but all the lights are on now and while the TV may still be winking at me (I’m an old journalist and therefore a news junkie) I also write, read, work on my hobbies do things with Robin and enjoy life. I even re-started my old consulting business, a business I had given up for dead after my transplant. Hang in there friends, don’t give up, don’t give in, fight for your life, enjoy every day — believe me it’s worth it.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 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 video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

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.

Posted on February 7, 2009, in The will to live. Bookmark the permalink. 8 Comments.

  1. nice story, learn to be a steamer…..quality of life is more than the lenght of life. why quit and preach…i believe you to be sincere
    and respect your view..good luck to you
    if you ate right, exercised right, mentally right, an quit the worrying
    about you problem you might of not had this problem…
    fruits of the grain and the field are for the people…

    what you didn’t learn was use but don’t abuse

    i hope you can share
    tnx
    bob

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  2. Curt:

    This is absolutely the right forum to tell your story. Mine pales in comparison. I hope all of our readers savor every line of what you wrote. All I can say is Wow! and God bless you and your donor.

    bob

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  3. Bob,

    Your a walking commercial for the anti-smoking movement! Grace is indeed overwhelming, isn’t it? I have a story to share with you also but do not know if it is the right forum. I will put it here anyway and you do what you want with it.

    THE ACCIDENT

    At the time, September 2005, I was working for Schwans as a route manager. Days where long and I usually got home after 11 p.m. I was living alone at the time so, before I went to bed I had a peanut butter and jelly sandwich. Three hours later, that triggered a gall bladder attack so I went to the ER in Fairmont MN. They took a few x-rays and decided to send me to Mayo Clinic in Rochester MN by ambulance. After the rough ride, I arrived at 5a.m and was admitted.

    The procedure they did is called an E.R.C.P*. This is a procedure in which they stick a lighted probe down your throat with a tiny claw at the end. In this way they could open up the passage way and let any gall stones pass. It seemed to go well but without knowing it they punctured my intestine. I kept running a fever and getting sicker. When my kidneys shut down, they they had to take drastic measures to save my life.

    They put me in a drug induced coma which lasted the month of October. They then opened my abdomen up and washed out my abdomen cavity 7 times. Of course, I remember nothing. They placed me in a special bed that would rock me gently back and forth so that no fluids would settle in my body. Even with that, my hands and head swelled to almost twice there size.

    When I woke up, I had over 10 tubes coming out of my stomach and a large 9 inch diameter hernia in the middle of my stomach. I could not drink for 3 months and could not eat for 6 months. I was so weak from the coma and surgery that walking was almost impossible. Because of all the drainage and feeding tubes, I was forced to lie on my back the whole time. Three times a week, they would wheel me down to the Dialysis unit for dialysis. It was their hope that my kidneys would be able to bounce back from the trauma. But as time went on the possibility of that happening decreased.

    Probably the scariest time for me was in early March, I had a blood clot pass through my lungs and I could not catch my breath. So after 2 hours of heavy breathing, they transferred me to the ICU unit. This all happened at the same time I had a skin graft done for my hernia.

    I was in the hospital for 210 days or 7 months. Since I was not able to care for myself, I came home to Yale SD to live with my parents on April 23, 2006 to recover. They estimate that for every day you are in the hospital, it takes 3 days to recover. I had a long road ahead.

    I started dialysis in Huron, S.D and made 3 trips a week to the dialysis unit there on Tuesday, Thursday, and Saturday. Dialysis is a procedure of cleaning the blood and taking out excess fluids since the kidney can not produce urine. Dialysis would last for 4 1/2 hours as you are hooked to the machine. This would leave you very drained for the rest of the day so really, it was an all day procedure. I was limited on the amount of fluids I could drink. Recommended is less than 50 ounces between treatments. I was also limited in foods I could eat since your kidney works at balancing potassium and phosphorous in the body. To much potassium causes a heart attack. Therefore, it was recommended not to eat potatoes, tomatoes, and all dairy products.

    In March of 2007, I went to Dr. Fred Harris in Sioux Falls SD and he did a masterful job of fixing the hernia in my stomach. Again, this was a two week hospital stay and more recovery.

    Since then it has being a matter of recovery and being evaluated for a transplant so I could get on the transplant list. I was going to have the transplant done in Sioux Falls just because it was closer. I had little hope at this time of getting a kidney because of my blood type which is O. Since it is the most common, it also means that type of kidney is most in demand. The doctors told me that it would be at least a 5 year wait. And when I asked them what is the average life span of someone on dialysis, they said 5 years.So, I just resigned myself to thinking that dialysis would be a part of my life until I die.

    Then a miracle happened in 2008! A friend of the family came forward in January and offered to donate a living kidney. This is so much better then a cadaver kidney for which I was waiting. In March, I went to Rochester MN for an evaluation since that is where my donor wanted to go. Actually, it was a very good decision as they do one transplant a day there. We were both approved and set July 25 as the date.

    Everything was not without a hitch though! A 2 hour surgery for me lasted 11 hours because there was so much scar tissue on my right side of my abdomen they had to put the kidney on the left side. My doctor told me in confidence later that he was about ready to give up. Then, a day later they had to go back in because there was a leak in one of my bowels. They did fix it but it delayed my recovery by about a month.

    I left the hospital on August 11 and had to stay in a motel till September 10 for checkups. Then I was free to go home. Since then, my future has been wide open up for me! Now I can drink as much as I want and eat what I want. I can travel for longer than a day and am free now to continue a live as normal as before. All because someone was brave and kind enough to sacrifice giving me a kidney!

    At the writting of this note, I am in the process of starting a speaking career with this story which, like yours, has many applications. I am also moving to Sioux City, Iowa since meeting a fine woman on eharmony! All possible by the gift of donation. Who knows how many lives will be touched by that selfless gift!

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  4. I’m glad to see you’re back to blogging again too!🙂

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  5. Bob, I’m so glad that you’re doing better now. You have quite a story and quite a lot to live for! I’m glad that Mayo has been able to help you so many times. They’ve helped our family a lot too…although, up in the tundra–Rochester!

    Sarah

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  6. You have come a long way Bob. I am waiting for a lung transplant. I have IPF and am listed at Mayo in Jax. I can’t say enough about how great the Mayo staff has been. I am presently on hold because I have been stable. Chronic illness has certainly worn me down. Living on oxygen and going one day at a time! I had relocated there a few years ago and benefited by attending support group. I wouldn’t be surprised if we have mutual friends. Do you live in Jax?

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    • Yes, Robin, I live in Jax. Your story is important and I will pray daily that you get the help you need. I firmly believe that we are tested in many ways. My life has been full of tests, some I passed and some I failed but none of them slowed me down for very long or affected my “never give up” attitude. By writing this comment, you have reached out. That says a lot about you.

      Recently a friend in Vancouver BC Canada, Savilla Marie, got a new kidney from a total stranger. She suffered for a very long time and was told the waiting list for a new kidney there was eight years. Then, from out of nowhere, a total stranger gave the gift of life and Savilla is reborn.

      there are thousands of wonderful stories out there. I hope that soon your story of success will be one of them.

      bob

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  7. Thanks for sharing your story, Bob. I hope it will help provide hope for others going through rough times, to hang in there. I’m glad to hear you’re back and doing well!

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