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Archive for July, 2011

Welcome to ‘Memoir Mania”

Please look around , read my blog and check out the links to all things “me”.

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Death: Living to Talk About It

 For over twenty years I have found myself on the verge of death and fought to stay alive. My heart attack in 1989 marked the beginning of a life  and death struggle that has lasted more than twenty years. I have been in hospice, and my family told I had three weeks to live. I was on a heart transplant list but was removed because they said I was too sick to survive surgery. This is the story of the journey I am taking. Living, and dying with heart and lung disease. Join me as I talk about what it is like to be terminally ill, and to be told time and again that I was dying.

Check outmy web site  for information on all things me and my book, “Death:Living To Talk About It”   http://www.brianhayden.com/

Check out my You Tube Channel for face to face info from me and the best smoking cessation speech…EVER  http://www.youtube.com/user/Brha99

Want to follow me on Twitter:  go to   http://twitter.com/#!/brha99

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I realize that most of you out there probably have not read my book, “Death: Living To Talk About It”. I want to familiarize you with some of what has happened in my life. Some of the stories in my book. So I decided that I would share this story with you. Reminisce,  if you will.

There was a point in 2007 when I was incredibly close to dying. I was still waiting to be put on the transplant list. I was on a lot of medicine. Anti depressants, pain killers, calming agents…the works. I could not do anything. And when I say anything. I mean ANYTHING. I was almost completely bed bound.  To get around, I used a wheel chair too, although I could get around in a walker for short periods of time.

Then it happened. I got the call from the transplant hospital. My quest to be put on the transplant list is approved. Come get your pager! We did. That very morning. Denise and I were elated. Getting a pager was almost like the promise made for a better life. We could, at last see the future, albeit was still pretty fuzzy.That “floating on the cloud” feeling lasted about six hours.  The phone rings. Denise picks up the phone: “hello”. Brian. It is for you. It is Dr Kwan”.  My transplant doctor. Well, to get to the point of it all, Dr Kwan told me that my status as a heart transplant candidate is suspended. I was caught with nicotine in my blood, and smokers do not get new hearts.

We were shaken up a but, but hey! I messed up. Real badly. I can wait…maybe.  The next day I got another call from Dr Kwan. He said I was removed as a candidate because I was “too sick”. Apparently my lungs were too messed up and I wouldn’t get a heart.  Was it an excuse to remove me because of the smoking thing? I don’t know. But it blasted any chance I had to live. Without a transplant, I was doomed. That was that.

About a week later, I found myself once again in the hospital. The usual thing. Heart failure combined with pulmonary effusion. After careful consideration, and counsel from friends and doctors, Denise and I decided I would enter the “Home Hospice” program. I would die at home.  I sat quietly as my son removed the bed from the bedroom. Watched as the crew brought in the hospital bed, and the supplies. I had no idea that the doctor was briefing Denise on what to do, and how often I can have my morphine, Oxycontin, Xanax, sleeping pills, antidepressants and other stuff.  Denise gave me the medicine, and  off to sleep I went.

Three weeks later, I was still alive. Remarkably, I was still skulking about. Denise brought me and all those pills to the doctor. We gave the pills back, brought back into the mix some of my heart meds and decided to give life another try.

You never know what hand fate will deal you. That story happened nearly four years ago. Here I am  writing stories,  doing public speaking gigs for the American Cancer Society and probably for the American Lung Association too.  Oh, did I tell you?  I am tweeting now. I talk with younger folks that have heart disease. I try to relate my story to show them that they should never give up. That they should always have hope in their heart, regardless how badly damaged their precious young hearts are. That is the moral of the story of my book. That is one of many emotions you may feel reading the book. This story (with much more detail) is in my book, as are many more heart warming, sad and funny stories.

I use this log to keep folks up to speed on how I am doing. I will use it at some point as the back bone for another book. Please continue following this blog. Subscribe to it.

Follow my You Tube Channel: http://www.youtube.com/user/Brha99  and subscribe to it

Follow my Twitter thingy: http://twitter.com/#!/brha99 and subscribe to it

Read more excerpts from my book and find links to buy it on my web site:  http://www.brianhayden.com

Thank you for all of your support and encouragement. Stay well and love each other. Life is too short to settle for anything less

 

 

 

 

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That last blog entry was fun. I haven’t veered off track like that…EVER. Believe me, I will again. I needed the break because I am afraid of what is happening to me. I am afraid that the opportunities for breaks will come less frequently, and the desire to get a break will come more often.

Let me preface this discussion with a side bar. It is my experience, when talking about medical issues, using the exact medical and scientific jargon gives me the best understanding of what is going on with me. I insist that the doctors explain things to me as if I were a doctor. Then, if there is something I don’t understand, (and there always is) I will ask for the little words. For clarity’s sake, I do not want to over simplify some of the issues. I think that is insulting and I lose some ability to explain things properly.

The problem is complicated. You all know about my heart and lung issues. For my new friends who don’t know, please cruise back into the blogs. I think that I am beginning a cycle of poor heart function. When I say poor, I am not talking about my normal poor heart function. I am talking about really serious poor heart function.  I find it helpful to make that distinction. I can go on for months with my regular “poor” heart function. Then, for no apparent reason, my heart gets weaker. One reason this is happening now is the weather. Yes, yes…blame the weather. It’s true! Hot weather, particularly for chf patients is dangerous. Our temperatures here in South Texas is hovering around 100. Temperatures have been there for more than a month. I can not fully explain the mechanics of why this happens, but it does. To confirm my theory, I searched the web with this phrase: thermal tolerance for chf patients .  There are many studies, the conclusions derived suggest that very thing. People with congestive heart failure (chf) do not fair very well in the heat.

The heat affects are making me sicker.  As a result, I think that my ejection fraction is reduced. That is a measurement of the amount of fresh oxygenated blood pumped out of the left ventricle. Several years ago, that number was too low to measure. Then, they put that bi-ventricular pacemaker in me. That brought my ejection fraction (EF) up to 15%. Putting things into perspective, normal, healthy adults have an EF between 60% and 80 %.  Persons with sick hearts might have an EF of 30 to 50 %.  The Social Security Administration and the Veterans Administration declare that an EF of less than 30%  renders the patient 100% disabled. In truth, most doctors will agree that an EF of less that 30% is serious heart failure.

Just last year, after more than three years of bi-ventricular pacing, my EF reached 30%. That’s good. Most of the time, I can function, albeit for a limited amount of time with a 30% EF. One thing though. Something that the doctors don’t, or won’t tell you. The EF measurement they get is not static. In other words it may change from time to time, even within a days’ time.  Too hot? Too much stress? Exercise too hard? For lots of reasons, persons with sick hearts can tire quickly. After all, your heart is just another muscle in your body right?  It is specialized, but a muscle none the less.  Imagine what your muscles feel like when you over exercise. They hurt. Maybe get shaky. When you go to pick something up, it may even be more difficult. Imagine then when you tire out an already sick heart. When the EF is poor, your ability to provide oxygenated blood to your body is diminished. That is how I am feeling. All the time. Every day. I don’t know about you, but I am ready to blame the weather.

I really do not want to go back into the hospital for another heart failure exacerbation. I’ve shared with you stories of my hospitalizations many times.  Today is different. I am sharing this with you before the decision is made.  Before I decide to go to the hospital or not. I don’t know. It may be a day, or two, or three before I can either make a decision myself, or get dragged to the hospital by Denise.  Perhaps an ambulance ride will be in order later today. Who knows? Stay tuned.

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I need a break. I am tired and I need to rest. I feel exhausted and you have got to leave me alone for a while. I can no longer keep my eyes open and I want you to shut up…for about an hour. Well, that was fun, and although I am tired, I never rant on like that. I always wanted to. But I never did. That is until now, and I must say it felt terrific. I have a lot of pent-up hostility. I would like to share some with you.

People, generally speaking of course all make me crazy. Not those of you that bought my book, or are contemplating buying my book. You guys are normal (relatively). Same thing for my blog readers I do not consider you crazy either. No, I am talking about everyone else.  Mind you now I am not a sociopath. The argument could be made, however that I am a people-path.  I have nothing against society, for the most part. I do have some real complaints about people. Let me explain.

Here in San Antonio Texas we have lots of drivers.  Like most places, some are better than others. My problem is that there is an inordinate number of stupid people in the cars here in San Antonio. For example, the light at the intersection is red. Calmly and quietly I wait for the light to change color. Suddenly,  the light turns green…The light turns green…THE LIGHT TURNED GREEN YOU IDIOTS. PUT YOU FOOT ON THE GAS AND BEGIN MOVING!!!! Finally they go, but it is too late. Only three cars made it through the intersection. I am number four.

This scenario plays out more frequently than you might imagine.  My wife has this little rubber doll in the car. It talks. When she squeezes the doll, in a calm voice the doll reminds me “take it easy”. “It’s alright”. In a quiet, calming voice that miserable little doll is mocking me. It is, in fact making a final attempt to put my blood pressure in check. The truth is that the doll makes me laugh. It calms me down almost immediately. Just in time to get behind idiot number two.

In Texas, one must have auto insurance. It is the law, and a law I fully support. The problem lies in the fact that there are many people here in San Antonio that are driving without auto insurance. Do you want to know how I can tell? There is a sure-fire way of telling. THEY GO ONE-HALF THE SPEED LIMIT!!!! I always seem to get behind this guy that is going 35 mph on the freeway. Once again I feel my pulse pounding in my forehead. Once again, Denise brings out that stupid doll. “It’s alright”.  “Take it easy”. Another heart attack averted.

Finally we get to our destination. The shopping center. Whew!! My torture is nearly over. I look for a place to park. I see an opening two aisles over. Wait! There is a person walking from their car to the store. Wait…wait..wait…GET THE HELL OFF THE ROAD!!!! The fricken doll once again makes his appearance. I don’t care. Finally I reach the parking spot. I begin to relax. As Denise and I walk to the store, I realize we are walking  in the middle of the road. I don’t care! Denise does though. She moves me to the edge.

Walking into the store, the icy-cold breeze refreshes me. It feels good. Of course, for some reason all of the people who were making me crazy on the streets are now in the stores. And guess what? They are all walking the same way they drove!!  Then, from out of now where, I hear a muffled voice. “It’s alright”.  “Take it easy”.  Denise always has my back. She brought that stupid little heart attack stopper in the store with her. I love Denise.

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Today, Denise and I went poking through a drawer that held some old papers. You know that drawer. We all have that spot where all the paperwork in the house tends to congregate.  As we were rummaging through the pile, I came across some very disturbing documents. The documents were those used to admit me into the home hospice program. August third, two thousand seven, Brian Michael Hayden is admitted into the ACME Home Hospice Program. The words seem to stretch out and last forever as I read the document. Signed…by my wife. I was already drugged up and tucked away.

Before I continue, let me clarify what I am talking about. “Hospice” is a place where people go to die. The facilities I am familiar with are filled with caring, wonderful people. People whose job it is to make your transition from alive to not alive smooth, and pain-free. My mother and father found their last days on earth in such facilities. They passed with comfort and dignity.

Home hospice sounds like a good idea. They give you a piece of paper with telephone numbers. Nurse…, doctor…., personal hygiene…,pain management…,cemetery officer…,death…XXX. I immediately noticed that the emergency number was conspicuously absent. Equally missing was a note to call 911 if something goes wrong. Then it occurred to me. What if something goes wrong? I will die!! Oh, that is the whole point of it. If – no – when I die; that is the expected outcome. Just call the cemetery guy. The point is, your care giver does all the work. The care giver does every thing. The hospice guys don’t really do anything.

Most of the other documents in the package reminded me of the brochures one might get from a travel agent. “Oh sir, I would like information on a cruise to Mexico. Please send me some info”. A few days later, the big envelope with all this stuff comes to your home. That is exactly what I had here today. Brochures for the vacation of my life. Or rather the vacation to end all vacations…and my life.

For me, hospice is best described by Charles Dickens; “It was the best of times. It was the worst of times”. I know people think he was talking about those cities, but in my opinion, he was talking about hospice! I do not remember most of the time I spent in hospice. I thought that I had spent two or three days in hospice. I was in hospice three weeks. Did I eat? I am not sure. Did I go to the bathroom? I cannot recall. Did my grand kids visit? What about my friends, and children? I do not know. For me, hospice was not a place to peacefully pass. It had turned into a drug-induced stupor. Morphine, Oxycontin, Xanax and other stuff too. Lots of other stuff.

So, I decided to die. The problem is, I can’t. I am too drugged up. I cannot say my good byes. I have no closure. It is an enormous burden on Denise (my wife) both in physical and emotional terms. It is too much. Home hospice is TOO MUCH! Dying at home is not at all as it is made out to be in the movies. It is just TOO HARD!!  Denise packed up the pills, packed me up and off to the doctor we went.  We discussed the situation with the doctor.  We shed some tears and did some hugging.  In the end. she gave them back the pills. She told them I was no longer in hospice and told me to stay alive. So I did.

When Christmas 2007 arrived, I was still alive to celebrate with my family and friends.  By the time the summer of 2008 came about, I realized that I was not going to die. Not yet. I stopped smoking. I will do whatever it takes to stay alive. I will never just lie down and die again. I will be a better husband, better friend and better father. I will be the kind of person I think everyone thought I was.

When Denise packed everything up and brought me and the pills to the doctor, she changed my destiny.  Those tears she shed for me spilled onto my heart. Those tears of an angel saved my life. I shall forever be grateful that God sent that angel to me . Thirty eight years ago Denise entered my life. That day in 2007, all those years later she saved it.

 

 

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Last time we talked, I may have led you to believe that I didn’t like my lungs. That I considered them, “second class citizens”. Let me clarify my position for you. I love my lungs. For nearly 58 years, my lungs and I have enjoyed a symbiotic relationship that, I must say is quite fulfilling. Perhaps fulfilling  may not be the best choice of words. Filling is not what is happening. I mean, I take a breath. A deep one sometimes, but like The Rolling Stones once said, ” I can’t  get no satisfaction”. It is like my lungs have given up. Gone on strike perhaps. After all they were at least born democrats.

No. What is happening is emphysema. Most of us have heard that term for years. We assume it is some type of lung disease. And you are right, but  there is a lot more to it. According to the Mayo Clinic:

“Emphysema occurs when the air sacs in your lungs are gradually destroyed, making you progressively more short of breath. Emphysema is one of several diseases known collectively as chronic obstructive pulmonary disease (COPD). Smoking is the leading cause of emphysema.  As it worsens, emphysema turns the spherical air sacs — clustered like  bunches of grapes — into large, irregular pockets with gaping holes in their inner walls. This reduces the surface area of the lungs and, in turn, the amount of oxygen that reaches your bloodstream.   Emphysema also slowly destroys the elastic fibers that hold open the small airways leading to the air sacs. This allows these airways to collapse when you breathe out, so the air in your lungs can’t escape. Treatment may slow the progression of emphysema, but it can’t reverse the damage”. 

There are many diseases out there. Many of these diseases are horrible. Imagine for a moment that you are sitting in your living room…you are breathing as you normally would…except now you notice that despite taking a breath, you still feel starved of oxygen.  Let me share with you how it feels.  Take a deep breath. Hold it…hold it.  Now, release it slowly. Keep going…keep going. Now just before you run out of air to blow out, stop. DO NOT BREATH IN.  Hold it…hold it…Ok breathe. Did you feel that hunger for oxygen. You could feel it in your gut, right? Well, that is the way thousands of people with emphysema feel every second of every day. That is the way I feel too. Though my disease is not advanced, I often times have that feeling of being starved for oxygen.   Portable oxygen helps, but only helps a little.

I love my lungs. I just didn’t take care of them. Smoking, environment, work. All things I exposed my lungs to over the years. I guess you can say that my lungs are, at last throwing up their little lung arms and giving up. I tell them everyday that I am sorry. I tell them that every thing will be alright. I take my three inhaled medicines, clear my throat and make ready for a new day and wonder: is this the day my lungs will finally stage a walk out. Is this the day my lungs will stop loving me.

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Why is it that everyone presumes to assume that my only real health problems are nestled quietly in my heart. I have mentioned from time to time that my lungs are sick.  Should I assume that everyone presumes they are healthy? I ask these questions because all of our conversations seem to be centered around heart health issues. Heart failure this…heart transplant that… Know body ever asks me about my poor neglected lungs. I am not ever sure if people should ask. How would this sound to you: I am walking down the street. Suddenly a friend of mind rounds the corner, heading straight towards me. He spots me and says; “Hello Brian. How’s your lungs”? That sounds funny. Too funny.

Still, my lungs have filled the seats in the balcony for too long. It is time to show them a little attention. A little love. This all started a couple of hours ago. I was reading my Face Book screen (pardon me if I haven’t grasped the proper lingo) when suddenly a new thing came popping out. It was from the American Lung Association – San Antonio branch. They are offering a support group for people with COPD. To be clear, COPD stands for Chronic Obstructive Pulmonary Disease. For me, that means bronchitis  and emphysema. My lung function is sitting around 40%. While I am not chained to an oxygen bottle, I have them. I sleep with added oxygen and use it periodically through the day. Some days more than others.

I wonder though…how effective a support group could be for COPD patients. Everyone would be coughing and wheezing. The only one with enough breath in their lungs to complete a sentence is the facilitator.  Oh, sometimes I crack  myself up. I am not deterred. I sent in my RSVP and will be attending. I have never been to a support group before. What will they say? Instead of a pot of coffee at the back of the room, will there be a big tank of oxygen?  “No thank you. I’ve brought my own”.

After months of talking about heart disease, it is like a breath of fresh air to talk about my lungs.  I don’t know really. I can’t take deep breaths anymore.  Someone told me it was like a breath of fresh air. Who knows? Maybe they have some new information that will blow me away.

For Smoking Cessation – My Way, use this link.    http://www.youtube.com/user/Brha99

 

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