journaling

Too Old To Get H1N1 Vaccine

If you are over age 64 and you  want the H1N1 flu vaccine (swine flu) forget it!  Even if you meet the criteria set forth by the Centers for Disease Control (CDC) you will not be allowed to get the vaccine.   I know, today I was refused a shot.   This development has great significance for everyone over 64 and especially transplant patients with compromised immune systems. 

According to the CDC website (http://www.cdc.gov/h1n1flu/highrisk.htm) these are the criteria for getting an H1N1 shot:

1. People at High Risk for Developing Flu-Related Complications

• Children younger than 5, but especially children younger than 2 years old
• Adults 65 years of age and older
• Pregnant women

2. People who have medical conditions including:

• Asthma
• Neurological and neurodevelopmental conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability (mental retardation), moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].  
• Chronic  lung disease   (such as chronic obstructive pulmonary disease  [COPD] and cystic fibrosis)
• Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)  
• Blood disorders (such as sickle cell disease)
• Endocrine disorders (such as diabetes mellitus)
• Kidney disorders
• Liver disorders
• Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
• Weakened immune system due to disease or medication (such as people with HIV or AIDS, or cancer, or those on chronic steroids) 

I fit into three of the criteria.  I have asthma, COPD (chronic obstructive pulmonary disease) I am over 65 and because of my heart transplant two years ago I have a suppressed immune system.  My transplant cardiologists strongly recommend that people like me should get the H1N1 shot yet when I showed up at the clinic today I was told by the nurse that I couldn’t have the shot because I was over 64.  I double and triple checked to see if that is true and it is.  The government doesn’t care if your health is at great risk from H1N1 if you are over 64.  What I infer from this regulation is that CDC has determined that people my age don’t have much time left anyway so lets not waste vaccine on them even if they meet other criteria.

I would immediately agree that children and pregnant women should get the vaccine ahead of all others.  That only seems fair and fairness is all I ask.  Never before in my life have I been told I was too old for something.  This smacks of governmental age discrimination.

If you agree that this situation is unfair and discriminatory let your congressional delegation know.  Call them, email them or stop them on the street.  CDC should not be allowed to say one thing in public and then introduce restrictions in private.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.   

Reflections on Recovering From a Heart Transplant

On August 21, 2007, I received a new heart at the Mayo Clinic in Jacksonville, Florida.  I also received a new life, a new attitude and a new appreciation for my family and friends.

I’m not going to write about the difficulties I encountered but rather I will attempt to describe my enrichment by the process.  Here are some of my “awakenings” of the last eleven months.

• A new appreciation for life and a new ability to “see” things I was oblivious to before my transplant.  Now I “see” nature and the life around us, I “see” children at play, puppies, and love.  Yes, you can “see” love but you have to look and comprehend.

• I have found the real meaning of love and it is far deeper than words.  Love, is a look, a touch, a gesture a movement.  Love can be seen in people’s eyes, how they listen and the helpful actions they take.   Sometimes you can be aware of love even though the actions taken might be wrong.

• The gift of life is the ultimate in giving.  While receiving the gift is relatively easy, making the decision to give is sometimes difficult, especially for families with dying loved ones who have healthy organs.  Yet thousands of people make that decision every year despite the enormous grief they are experiencing.  I hope my donor family knows how intensely grateful I am.  I hope they know that they not only saved my life, but also caused great happiness for me, my family and my friends.  Let us not forget the living donors.  Can there be a greater expression of love, concern and compassion than those who voluntarily give all or part of an organ?  I think not.

• While I loved my family unconditionally before the transplant I love them more deeply now, than ever.  And – while it sounds selfish, I now understand the depth of their love for me and how what affects me has an equal effect on them.  Oh, how the phrase, “No man is an island …” applies.  We should all recognize that and we would be far better people.  My greatest blessing is my wife, Robin.  I simply cannot express my love for her.  I won the biggest lottery ever when I found her. 

• My dear, dear friends.  An experience like the one I just had really lets you know who your friends are.  There are friendly acquaintances and there are true, loving friends.  While both are important to me, few of the people I know fall into the latter category.  One has been a friend since we were ten years old.  I finally know what the word means; I suspect he has always known. 

I have learned so much more than the five items listed here, but these are the personal lessons that stand out.  All in all, I have to believe I have come out of this experience as a better person and one whose “betterness” will continue to grow.  In many ways, I wish everyone could have a transplant, we might all be better for it.

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

Zero to 60 in Eight Months, What a Ride!

Today I got the results of my latest heart biopsy from Lorraine my Mayo Clinic transplant coordinator.  It is eight months since my heart transplant and the news was great. 

First, she told me that for the second month in a row I showed ZERO rejection.  That means my body, at least for now, is not trying to reject my new heart. 

Then she told me there would be no medication changes.  Everything was stable and could remain as is.  Her third piece of news was that I no longer would have a heart biopsy every month; it would now be two months between biopsies.

But the best news was that I am 60 percent!  “So,” you ask, “Why would anyone get excited about being 60 percent?” If you are not a heart patient, you probably would not understand. Here is the story.

Prior to my transplant, and for twelve years I suffered from cardiomyopathy.  The heart muscle was failing.  It was taking in more blood than it was ejecting, and had to grow larger to accommodate the extra blood.  As the heart enlarged, it got weaker and so on and so on. When the heart gets weaker so does the body.  Finally, I was in the end-stages of the disease.  The effect was that I could no longer walk 100 feet or more without stopping to rest.  

Here is the definition of ejection fraction (EF) according to the Mayo Clinic website: (http://www.mayoclinic.com/health/ejection-fraction/AN00360)

“During each heartbeat cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it doesn’t empty all of the blood out of a ventricle. The term “ejection fraction” (EF) refers to the percentage of blood that’s pumped out of a filled ventricle with each heartbeat. This measures the capacity at which your heart is pumping.  A normal LV ejection fraction is 55 percent to 70 percent.”

I am extremely happy with 60% because only 8 months ago my EF was between 15 and 20.  For all practical purposes, I was an invalid.  Now, my heart is as efficient as it was thirty years ago. I think I’ll celebrate, want to join me?   

Thank you donor and family, Robin my caregiver and the brilliant people at Mayo Jacksonville.

To My Donor Family

It is national donate life month.  Seven months ago, I had a heart transplant.  On April 13, 2008 I sent this letter along with one from my wife, Robin.   I hope sharing this letter will not only increase organ donation but will offer some comfort to other donor families.   

Dear Donor Family:

On August 21, 2007 I received a heart from your loved one.  You, he and it saved my life.  I promise I will take care of this gift far better than I took care of my own natural organ.  Each day before I get up I take a moment to feel this marvelous gift steadily thumping in my chest.  It is alive and healthy and has created in me a new appreciation for life.

More than that, though, I am always aware that this heart is not mine.  It belongs to the kind of person all of us should aspire to be.  Moreover, he came from the kind of people all of us should aspire to be.  Maybe it is my imagination but since receiving my new heart, I feel a serenity I have never before felt.  I feel a concern for others far greater than I thought possible. I feel a responsibility to all organ donors and their families to do what I can to honor their loved ones by committing the rest of my life to promoting organ donation.

I was very sick prior to my transplant.  I could no longer get around very well because my heart just could not pump efficiently enough.  I knew I was dying and as a 68 year-old man with COPD and B positive blood, I did not think a transplant was in the cards.  But it was.  As a result, I believe that God saved me for a reason and that reason was to promote organ donation to honor you and your loved one.

I appreciate the simple things now, much more than before.  I look forward every morning to seeing my loving wife and caregiver, Robin.  Staying in contact with family and friends has become more important than ever before.  I enjoy sitting in our sunroom watching the sunrise and sunset.  Each day gives me a new thrill because each day is a gift from you and from God.

I don’t know if we will ever meet and although I am likely to be at a loss for words, I would like to thank you personally.  You gave me life, you gave me peace and you gave me a profound sense of gratitude and understanding.  I am a new person and I hope that in your grief it helps to know that a part of your loved one is alive and that with his help I am trying to live my life in a way that would make you proud.

God bless

Bob Aronson

Walk Backwards — Forge Ahead

<I grew up in the 40’s and 50’s in Chisholm, Minnesota, a small town about 90 miles south of the Canadian border. Winters were cold, windy and snowy. Cars did not start unless you took the battery in the house every night and even that was no assurance of success. Getting a ride to school was unheard of because like most families we had one car and if it started dad took it to work, so – we walked everywhere (about a mile to school, uphill both ways ).

We learned early that when a blizzard was really howling you pulled up your hood, covered your face, put your head down and pushed forward. Sometimes, when extreme winds left us breathless, we would turn around and walk backwards. They did not cancel school in those days and there was no reward in going home, so we just kept moving. Not much could stop us from getting to where we needed to go.
My reminder of this great life lesson came on November 21 this year. Three months post heart transplant and feeling great, I was walking on the treadmill for an hour a day, doing all the grocery shopping, some light housekeeping and even considering resuming my career. Then, ”Bang,” I was hit with one of those breathtaking blizzard winds, I got pneumonia and was hospitalized the night before Thanksgiving 2008.
I had been told several times that because the anti-rejection drugs left me with a suppressed immune system, contracting a “bug” was very likely, but I thought, “I’m doing well, it won’t happen to me.” Well, the something that couldn’t happen, did and my energy level was affected immediately.
If you have ever seen snow blowing off the roof of a house, then you know how I felt. All my newfound energy was slowly but steadily drifting away. When I left the hospital after five days, I was almost as weak as I was after my transplant. I don’t know where I would have been if not for my previous three months of cardiac rehab; at least I had some strength to lose.
In the face of this storm, I knew that if I gave in to it, I would jeopardize my new heart. Medicine and technology by themselves cannot make for successful transplants; exercise is a crucial element and must continue regardless of the obstacles.
My earlier life experience with snowstorms became relevant again, “Walk backwards if necessary but keep forging ahead.” I’m doing that. Now a couple of weeks after being released from the hospital my breathing is much better and while I’m still recovering from pneumonia I know that turning back is simply not an option.
I’m not perfect and yes, I get discouraged, but thanks to the medical and rehab professionals, my wonderful caregiver wife Robin and my own optimistic attitude I will make it through this storm even if I have to walk backwards to do it.
The lesson for transplant patients is that you will have setbacks but they should be temporary and maybe even motivational. We can’t afford to lose site of the fact that new organs saved our lives. Now, we have an obligation to take care of them. To do anything else is not only self-defeating and deadly, it is an insult to the wonderful donors and their families who gave us a second chance.
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 video “Thank You From the Bottom of my Donor’s heart” on www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transtation issues. When you leave this site go to our Facebook group, Organ Transplant Initiative and join. The more members we get the greater our clout with decision makers.

“I may have a new heart for you”

Dr.Hosenpud’s call to my cell phone from the Mayo Clinic in Jacksonville, Florida was totally unexpected.  I had only been on the waiting list for thirteen days.   I knew that many people waited a long time for an organ; some even died waiting so when Hosenpud’s call came I was shocked to the point of being dumbfounded.  

“Don’t eat anything,” he said, “drink only sips, pack a bag and come to the hospital as soon as possible.”  He noted that while the match between the donor and me seemed good, there could always be circumstances that might prevent a transplant. It could be a false alarm.  I know I said something to him like, “OK, I’ll be there.” I can’t remember anything else.  I am usually very logical and decisive but at this moment emotions ruled. “This can’t be happening, I’m not ready, this is too quick, do I really need a transplant?” All of these questions despite the fact that I had undergone extensive transplant evaluation and testing at Mayo for several months.

“I’m here for a heart transplant,” I told the receptionist at the hospital, thinking they would rush me somewhere.  They didn’t.  The organ, if appropriate for transplant, had not yet been recovered so there was no immediacy, no hurry. As I signed the appropriate papers and Robin and I called family and friends, my mind was rushing, I felt confused, conflicted and apprehensive. Like a stressful dream, images, thoughts and snippets of conversation raced through my mind.  None lingered, they just flashed by.  Strangely, I was never frightened. I knew that if I had a transplant I’d be fine. That, I assume, is the result of my lifelong eternal optimism.  I am incapable of negative thinking. 

In my conflicted mind the pace of events increased to many times that of the speed of light, far too fast for me to follow, I have to depend on Robin’s memory and the recollection of others to help me with the details of what happened next.  All I remember through that incredible deluge of thoughts and images is waking up in the Intensive Care Unit and wondering what happened.  “Was the transplant over, am I OK, where’s Robin, what’s going on.”  I fell asleep again almost immediately. 

When I awakened the nurse told me I had a new heart that was working perfectly and that I was doing very well.   Robin, holding my hand, reassured me that everything was fine and that I looked good.  The monitors seemed to be happily beeping and chirping in tune with my new heart.  There didn’t seem to be any reason for me to be concerned so again I fell into the waiting arms of Morpheus.  Nine days later I left the hospital totally amazed and full of hope. 

Someone else’s heart is beating in my chest

What a realization!  I can hear it, I can feel it, I can feel it’s effects but it doesn’t belong to me.  My old, damaged, terribly inefficient heart is gone and a stranger’s much stronger heart beats in its place.  Saying it doesn’t belong to me is important because it reminds me that I must take very good care of it.  With this gift comes great responsibility and I enthusiastically accept it.

So what’s the difference in my life?  I had Cardiomyopathy (a form of heart failure) for 12 years prior to my transplant.  The last two years were miserable.  There were times when I was so short of breath and found it so difficult to move that in a brief walk from the family room to the bathroom I often had to stop and rest.  Now with my new heart I am doing things I haven’t been able to do in a decade.  Already I am walkiing an hour a day on the treadmill, doing all the grocery shopping, working on my hobbies spending time with my family and feeling great.  I am up every morning around 5 ready to meet the day and excited about the prospects 

Each day, though, I think of the selfless decision made by my donor and his family, a decision that allows me to live and to help spread the word about the importance of donation.  I cannot imagine the grief the family is experiencing and I can only hope that they find some comfort in knowing that someone is living and contributing to the lives of others because of their and their loved one’s generosity.   

Recovering from a heart transplant is not easy, especially when you were not in good shape to begin with.  But it is a whole lot easier when you have the right attitude, the support of family and friends and the knowledge that a total stranger made a decision that allows you to live.  I have a new appreciation for life and love every day this new heart allows me to spend with my family and friends.  If you are not an organ donor please ask yourself why?  You can help save or positively affect the lives of at least 60 people.  Isn’t that worth it?  Knowing that a part of you will live on in someone or maybe several someones  should be a great motivating factor.  Recycle yourself.