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Archive for April, 2012

What would I give to be able to ride a roller coaster again? How much would I endure to be able to wrestle with my grandsons before they get too big and don’t want to play with their grandpa any more? How much pain am I prepared to tolerate to have a chance to live again? Well, we are getting ahead of ourselves. Let me begin earlier in the week.

Remember me telling you about my low blood pressure? Apparently having such low blood pressure with symptoms like I had a couple of weeks ago, AND waiting a week before telling someone was the wrong thing to do. I was chastised today, a little bit for waiting so long to tell someone that I was walking around dizzy and tired all of the time. The rule of thumb from this point on is; if it is causing me symptoms, let some one no, regardless of what it is or what the symptoms are! I had a fart that only caused my left cheek to vibrate! Help me. I do not know what to do. I have chest pain every day. Sometimes light…mostly light but occasionally not.  I have various aches, pains and “stuff” happening all the fricken time. Last week I had a pain in my left chest, down by the 6th rib. I figured it was probably a muscle pull. In all of these instances I did not call anyone. They say if I do not call that I am not participating in my health care. Granted, the light-headedness and weak feeling that accompanied my low blood pressure should have been reported before the week which actually passed, but I figured that I would adjust to the new medicine. OK. Lesson learned. Oh doctor!! Would you come here and fix my ass. I think it’s cracked!

My rant for the day is behind me. Now we can talk about other stuff. The doctors were able to get my blood pressure under control. The simple solution was to eliminate the 50 mg of Topolol XL that was added to the existing 100 mg of Topolol XL a couple of weeks ago. Also, It appears that the Amiodarone is doing what the doctors wanted – namely relax my heart to allow the pace maker to pace. My pvc’s seem to be mostly in check now. I drew that conclusion by the fact that my bi-ventricular pace maker is actually keeping my pulse up over 80 beats per minute. In fact, my pulse is at or above the pacing setting nearly all of the time. I wonder though: based on the previous paragraph, should I let the doctor know that from time to time my resting pulse is around 100? That doesn’t seem like a big deal, but they want my heart to work less while pumping more. I do not know if 100 beats per minute at rest is the right thing. I guess I will CALL THE DOCTOR tomorrow and ask him. See…I can learn!

On a more serious note: I had the most amazing discussion the other day. The transplant nurse runs a face book site that is kind of an extension of the transplant support group. I had joined the group a few weeks ago, but mostly stayed quiet. The truth is, there is not much action going on in this area…that is until a few days ago. One of the heart transplant patients: a woman who is more than one year post-transplant made a note about going on a roller coaster and how much fun it was and that she loved the feeling life gave her now. Uncharacteristically, I chimed in and introduced myself. I told her I was listed and longing for the day I can begin living again. About that time a gentleman who is probably about my age based on his picture chimed in. He is two and a half years post transplant and is loving every minute of his life, and even talks to his new heart as if the donor could here him. I was quite moved and talked with him as well.

Turns out both had second thoughts about the heart transplant; like the thoughts that occasionally run through my mind and despite the trials and hardship associated with transplant surgery and the year that follows, neither of these people held any regret about going through the process. Facing the mortality odds, the pain of surgery, the hassles of a low immune system, the diabetes from steroids, the increase hand shaking, the weekly heart biopsies and the myriad of  obstacles all recipients endure, both agreed that having a second chance at life is worth any price that must be paid.

What would I give to be able to ride a roller coaster again? How much would I endure to be able to wrestle with my grandsons before they get too big and don’t want to play with their grandpa any more? How much pain am I prepared to tolerate to have a chance to live again? Back at the beginning of this blog I posed those questions.  They were  questions I never really asked myself before. I had gone through a lot of mental gymnastics trying to figure stuff out, but never actually asked myself what would I give for another chance at life.. The answer is the question. What wouldn’t I give for another chance at life?

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 188 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

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Waiting for a new heart is not difficult. At least not how you may think of it. For Denise and I, the difficulty began by just being placed on the list. It was nerve-racking. Every time the phone rang we would jump out of our skin. As the days and weeks past, so too did our jitters. We settled in to a mostly normal existence, rarely giving the transplant a thought, except if we needed to go out we would make certain the phone was in Denise’ purse,  and limiting our travels to within an hour or so from the hospital and how Denise cannot really have a “girls day” and leave me behind because I cannot drive, we do not have another car and what if we get the call!!

So we settle in for what may be the long haul. Although I have had the picc line in since November, I have only been listed 5 weeks or so. I know. Seems like an eternity, right? The only problem we really need to deal with day to day is staying alive. It really is not asking so much, yet at every corner lurks something that is trying to take me down, take me out, bury me, put me on ice…you get my drift. This week was no different.

Problem of the week:  Blood pressure, or rather the lack of it. As the days go by and I build up a higher level of Amiodarone in my body, my blood pressure began dropping. Not crashing yet, but getting low enough to keep me tired and light-headed most of the time.  At the beginning of the week, my blood pressure was fairly steady around 100/60. My pulse had been rising since the Amiodarone and has gone from 50 to 60 up to around 80, which not coincidentally is what my pace maker is set at. As the days passed, I went from 100/60 to  85/48.  Again, give or take a bit, but the fact remains that 85/50 is too low for me. I can tell because over the last couple of  weeks my weight is beginning to creep higher, my stamina is creeping lower and by all appearances, I am sliding into a heart failure exacerbation.

That is not what I need right now. Every thing was beginning to work. My home health nurse Christine came by this morning for her weekly visit and I told her about the blood pressure thing. After seeing how I looked, she told me that 85/50 is too low for me. I need a blood pressure that will allow me to function. 85/50 is not the number. Later this evening I received a call from the home health nurse. She had talked with Dr Kwan’s office and relayed the problem. I am to discontinue the 150 mg Topolol. They will call me directly tomorrow to discuss the course of action. Sounds about right, although I am a bit nervous to eliminate the Topolol completely. You see, like the Amiodarone, Topolol helps my heart to relax and not skip beats. It has been a welcome partner in helping to keep me from getting shocked and I really do not like giving it up through a phone call. But wait. When I went back into the transplant program, I made a pact with myself that I will put my life in the hands of Dr Kwan and his team. I must trust that they know what they are talking about, so with some trepidation and a deep breath,I am dropping the Topolol.

Getting a heart transplant is complicated and full of situations that behave like a table full of domino’s.  Every thing that is done has an effect on something else. The trick (and I believe it is a magic trick,) is to find the balance. A compromise of treatments that provides the best outcome and the least amount of damage. We haven’t found that balance yet, but the doctors are getting closer. The only question that remains:  can I live long enough to find the balance? We’ll see. Stay tuned.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

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And another thing – that although I am dying, I get none of the drama of actually feeling like I am dying. Does that make sense to you? You see, I have been sick a very long time I think, and while “very long time” is subjective, I believe that most people will consider 23 years “at death’s door” a very long time. There are times when Denise and I get scared, but for the most part, I think we have become callous to the situation and I am not sure if that is a good thing or a bad thing. On the one hand, we are less likely to stress out completely. Imagine having to worry every day for over twenty years about whether or not you will die today? Just thinking about it and knowing that it is a possibility would be enough to give a person a heart condition, right? But on the other hand, feeling so caviler  about the whole situation might just land me in some other type of trouble. Take yesterday for example.

Denise and I were driving my sister back to the airport. Before we did, my brother and his wife met us at the “Cheese Cake Factory” for some lunch and we sat and talked and it was a very pleasant experience. I had always liked going there because, of course for their desserts.  After lunch I would order something so rich and delicious and completely unhealthy but I would order it nonetheless and I would have my little cup of European coffee and I would make believe in my mind that I was at one of those side walk cafes in Paris, and that it was 1928 and Ernest Hemingway and F.Scott Fitzgerald were at my table and we were enjoying the morning and discussing our writing.  And I did eat a large portion of some decadent dessert and I did order and eat one of their huge hamburgers that was thick and delicious and full of spices like paprika and salt. We said our good byes to my sister, got her to the terminal, turned and drove home.

Later that day I found that I was in a constant state of light-headedness. As it turned out, my blood pressure was tanking from the combination of the Amiodarone and Digoxin. It has been a couple of weeks and the Amiodarone blood levels are finally getting to where they need to be. Blood pressures like 85/49 and 92/55 are common place for me this afternoon. Bad timing because all of the salt from the lunch earlier is also beginning to work its magic. I can tell because despite the Amiodarone, I am skipping a lot of heart beats. So many in fact that it scares me silent. What I mean by that is that I am afraid of being shocked by the defibrillator, so I lay quietly and do not move, all the while doing a self-hypnosis exercise and try to get my heart to relax just a bit. By 2 am this morning, I finally fell asleep, my heart calm, I can finally relax.

When I awoke, an hour or so ago, my blood pressure was still 90/60. We all knew that this would happen when I began taking the Amiodarone. I expect that in a few days my body will adjust and I will begin to function at that rate.  My blood sugar paid the price though. Fasting blood sugars this morning were 143. The doctor wants my fasting blood sugars to be under 120. Usually it is. Not after my eating spree of yesterday. In my morning ritual I also got on that nice digital scale. 217.8 this morning. That is a three pound gain from yesterday. That will trigger a mandatory call to Dr Kwan this morning. I am in heart failure once again. Of course it was a combination of the salt and other spices and the high blood sugars and the low blood pressures. My heart cannot tolerate change…or salt… or low blood pressures. It is rebelling this morning and I will be dam lucky if I can make it through the day and not get admitted into the hospital.

Oh, at the beginning of this blog I forgot to mention one little detail. Life has a way of reminding us just how sick we are. Just when I relaxed and put my guard down, my heart said “OH NO YOU DIDN’T!” I am not allowed to be caviler about my condition. I am not allowed to not feel like I am dying for the truth is, until I get the heart transplant, I am dying. Slowly, but surely but if I want to make that quickly and harshly I need only behave as I did yesterday. You see, living with dying a very long time has made me a good liar. I lie to myself every day when I reject the premise that I am sick. I lie to myself anytime I feel it necessary to eat food with tons of spice on it. I am lying now when I say spice, I mean salt. I cannot even admit to you about the salt as if it is a sin and a secret and nobody should know. And do you know what the worst part is? Denise is never acquired my callous thought for the sickness. She always stresses, always worries and I am always so sorry that I put her through all of this and always so grateful that she opted to stick it out.

Yes, I have been sick a very long time indeed. But one day…one day I will not.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

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For the last several days, as the drama of the previous week’s subsides, I am left with my thoughts and as that is pretty much all that I am able to do, thinking becomes one of my favorite past times. For most of my life, the thoughts that ran through my twisted little brain were my own, but I promised to share with you ALL of what it is like to live with end stage heart failure, and what thoughts I have, that is to say the thoughts of a person who is by all accounts dying is having is part of the experience. Most days I have positive thoughts. That is a necessary tool if I will survive all that is happening here. I think to myself most days, “put on your happy face Brian, and enjoy your life, with whatever limitations my life brings to the table”.  I love my family, and I love Denise and I am thrilled to be alive and look forward to the day I receive my new heart and can get back to the business of living. Most days I can do that and most days I believe what I am saying. Most days.

Sometimes it isn’t so easy. Last night wasn’t so easy. I lie there, the soft hum of the air conditioner in one corner, the clanky sound of the oxygen concentrator running in the other corner, last evening my mind wandered into the forbidden zone, and it is dark and dangerous there because  desperation and doom lie there in waiting, searching for a crack in the armour, which is my hope, and it will squeeze into any crack it can find. These thoughts are dark an angry and selfish and angry and self-deprecating and angry and sometimes, just now and then, I find myself compelled to drift into the deep hole of…I do not know what…darkness. Perhaps I am pulled into the abyss. I do not know, but I will share with you what is down there.

I consider these slips off of the positive thinking bandwagon a character flaw, and a flaw which I recognize, but one which I  am unable to reconcile in my mind.  In those moments when I allow myself to slip into these holes, I get angry, but the thoughts rush in nonetheless. “What did I do with my life”, I think quietly to myself, diminishing any good things that I may have accomplish, I dwell on how I fucked things up. If you are offended by this language, I beg your pardon, but real feelings and thoughts come with it the inherit risk of having to use real language.  I allow myself to think of only those moments when drinking and indiscretionate  behavior were what I did and of the shame and  hurt I caused and that I probably deserved, at least earned the right to be dying and that I probably deserved to die and that I probably should just go ahead and die!

How did I screw things up so badly? Will Denise be happier once I am gone? Certainly it will be less chaotic, with the stress level at an all time low, maybe she will be better off when I go. Maybe I should not get a new heart because only people who deserve to live should be allowed to get a new heart and a new chance at life. I wonder then, will there be many people at my funeral? Is the mark of a loved man measured by how many people attend his funeral? For if so, I fear it shall be revealed of the truly disliked person I was.

I told you I would share my thoughts and these thoughts are true and right out of the memory that traps them, but they are deep inside, and they rarely surface because I know that they serve no purpose and are dangerous and they have no place in my waking, walking life.

The truth is, most days as I look around the world that surrounds me, I smile. I appreciate the blossoming of the trees or watching the squirrels run as Bear runs around the back yard chasing them. I sit back staring at Denise as she  prepares dinner and thank God she is here and part of my life. I am happy in my life and excited about what the future holds and the thoughts of death and dying, while prominent in our lives, really doesn’t play a major role in how we live our lives because the operative word here is LIVE. And that is what I intend to do for as long as I am able.

Tonight, Denise and I are attending our first heart transplant support group. I am not sure what to expect, but look forward to meeting and talking with these new people.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

Read Full Post »