My Story


My Story ~

Editor’s Note ~ The dedication, preface and first ten chapters were written shortly after my transplant in 2007. I have other chapters bouncing around in my head and will date them, when they are added. Please feel free to comment, or as questions. Thank you for reading.

Dedication ~

2nd Heart Beat – Dedication –

I am dedicating this writing to one individual and 2 groups of people.

First, and most importantly is the person that I will never be able to thank for saving my life. The donor. Not a day goes by without thinking of and thanking this individual.

Second, my family ……. They were there for me, every step of the way. They literally cried for weeks, they never gave up. Without them, I would be nothing.

Last, but certainly not least ~ The true heroes of today’s society, the doctors and nurses that kept me alive, gave me a new life and helped me recuperate. They are an awesome collection of people that truly care. It’s funny that while this writing is “dedicated” to this extraordinary group of people, they in turn are the most DEDICATED people on the face of this earth.

Preface ~

I suppose I can’t really explain what my rebirth has been like, unless you knew what my “old” life was like to some degree. I was a very hard working, classic A-type personality that always was in control, always had 100 things going on at once. I was a manager for a large industrial company, college educated, ex-military, and quietly dominating. I was almost always in good health. Tall, not over weight, but with a BAD family history, I used to smoke, and had a bad diet. I’ve been a person that’s been in life for the long haul …. One of long term relationships, my marriage & career are both over 35 years and many of my friendships have lasted a lifetime. I’ve always had my friend’s backs, and it turned out that they had mine as well.

I could take control of most situations without batting an eye, without raising my voice or even breaking a sweat. I thrived in pressure situations and had very little patience with ignorant people. I can be very politically minded at times. I have a wife, a son, a daughter-in law and two grandchildren.

My life has been a good one, and will be even better with time. It will take me some time to get all my thoughts across, but since a very dear friend of mine suggested that I have a lot to share with people I thought I’d document my “2ndHeartBeat”.

 Chapter 1 – The End (Week 1 & 2) 

I know it’s a strange way to start, but this entire event did start with “The End”.

The End! As in death.  Actually, I had over 100 “deaths”. Yes, the good old ER type of flat line on the monitor, nurses running, yelling and shocking me back to life. But, I’m getting a bit ahead of myself, let me tell this a bit more in order.

It was a gray, dreary, cool Saturday morning. I hadn’t been up very long, maybe 45 minutes. I don’t remember feeling ill that morning. No aches or pains. But, in retrospect, I had felt “ill” most of the week preceding this particular Saturday. Then, BANG, I had a massive heart attack at home.

I had no warning signs of any kind, just simply collapsed and fell out of a chair, crashing into my desk in my den. Thankfully, my wife was in the bathroom next to the den and heard me fall and she immediately called 9-1-1.

The next thing I knew, or was conscious of,  was that there were 3 paramedics standing in my den.  They asked me all the standard questions about if I had been drinking, taking drugs, partying and so on while they took my vitals. It was kind of a struggle to get me downstairs and out the front door on the gurney. I remember I wanted to walk down. I was transported to the local ER but they didn’t use any lights or sirens, which gave me a false sense of security at that time, that this wasn’t a bad “thing”.

When we arrived at the local hospital, I was taken right into their “heart center” where they prepped me for and did a heart catherization. I can still see the monitor screen where the doctor pointed out the three blockages that I had deemed me to be in need of a triple by-pass. Seeing your blockages on the monitor in the heart cath lab is NOT like watching a good video.

I can still remember the Dr saying to me, “We’ll have you home in 3 days” ….. Little did he know.

After the heart cath, I was then transported to the cardiac floor and put into a room. Very nice room at that, as I can remember. A couple hours later the cardiac surgeon came to see me and said that I was “stable” and he decided to wait 2 days before doing my by-pass, since it was the weekend. My family agreed, and then a few hours later …… WHAM!!! Another heart attack.

When I was conscious again I remember the surgeon was back in my room and said they were moving surgery up and he was assembling his “team”. At this point the details for much of the next few weeks will forever (I hope) remain very fuzzy or non-existent in my mind. Quite honestly, I didn’t even know I had the by-pass surgery, even after it was over. I was not in any pain. I do remember talking to family members at various times during the week and I also remember “crashing”. It got to the point where these crashes would be predicted in my mind only nanoseconds before I’d actually shutdown. At one point, I said, “Oh no” and then down I went.

Most of my memory of this time period is blank. I can remember a couple of specific nurses (Nikita was my favorite) that always seemed to be there, always saving me, and forever taking care of me. I can remember some discussions with family and there were many others that I didn’t even know were there. (My son, for instance.) If I had to put a number on it, I can remember about 5% of the week. And, actually, that’s a good thing.

I’ll tell you this ….. If you wake up in a hospital room filled with wide eyed, very anxious looking nurses surrounding you and they are all asking if you are “OK”, then you probably “coded”. This is NOT a good thing.

Well after the fact, while I was reviewing the mountain of insurance statements, I saw this line item – One ambulance ride, 3 paramedics ~ priceless (or $547).

Family members say the worst thing in the world to hear over a hospital PA system is “code blue, room # (your room)” ……….. And unfortunately they heard it too many times.

To answer a question I’ve had frequently since this entire string of events took place …….  I did not see the light, nor did I see the darkness when I coded. It was more like a switch …. One second I’m “on” and the next second I was “off”. There was no lost time in between. There were no sensations, pain, thoughts, sounds, visions recorded by my mind during the “code”. It was lights “off”, then lights “on” with the only change being now there was a room full of nurses. I didn’t lose my memory of what was being discussed or going on right before the “code” began. I can remember thinking after some of these events, that, “death doesn’t really hurt”.

But, I digress. By the end of this week the cardiologists had tried a vast amount of different things in an attempt to get my heart to stabilize. They had tried everything that they could and recommended to my family that I be moved to another facility that “may” be able to help me. The referral and arrangements took about two hours. It was another gray, chilly, dreary Saturday, exactly one week later when I was wheeled up to the roof to a waiting helicopter and slid in the back end.

The numbers for this first week were as follows – 2 massive heart attacks, 1 triple by-pass, approximately 50 “code blues”, 7 days in the hospital, total costs were approximately $89,000, and finally …… ONE helicopter ride to my next destination @ a cost of $10,000.

The End (Week 2) 

This helicopter ride was the end of the first week of my downward spiral and the beginning of the second week ……. the worst week of my life (such as it was) and certainly the worst week for my family as well.

Personally, after hearing my wife and others in my family recount the things that took place, I’m glad I have no recollection of any of these events.

I do remember that I was told I was having a problem and I was going to another facility to see if they could help. I remember the helicopter ride fairly well. I was placed into the helicopter through the tail on a gurney. It was a very tight fit, almost like I was in a cocoon or something. I knew where I was and where I was going, so it was fairly easy to watch out the little window that was next to me for familiar landmarks. For me, there was a calmness about this flight. I guess I didn’t know how serious my condition really was, which was a good thing. I wasn’t fighting it at all.

I remember the landing, but after that, this period of time is mostly a distant or foggy memory, or maybe it’s blocked.

I was wisked inside ……. And the questions began (as did the blood and other tests) …… what happened, when, family history ……. I can remember this questioning as almost an interrogation …. a constant stream of people, all asking the same thing, hoping (in my mind) that I would give the wrong answer and it would be used against me. Since this second hospital was in a larger inner city area, I could here some random outside noises as well. I can vividly remember someone playing the blues on a trumpet, which I (correctly) figured must have been a homeless person. I can also remember “clock watching” …….. I knew it would take “X” amount of time for my family to drive from hospital “A” to hospital “B”, but where are they? Why aren’t they here? Soon they did arrive, but I have no idea how soon or how long it had been, since I had ”coded” a few times in the interim.

At that point, those were the last conscious memories I have of that week. Everything else that happened has been told to me by family members (and a few medical professionals) ………. For the next 5 days, I coded another 50+ times (but who’s counting). They tried all kinds of high tech, cutting edge treatments, surgeries and drugs on my heart to get it to function like it should. But, my exacting combination, in order, of (bad) genetics, work stress, diet, smoking were too much to be overcome with the technology that was available.

As the week continued to unfold, the doctors apparently made some random, almost off the cuff remarks that included the word “transplant”. At least, that’s how my family members remember it. I also know that in times of very high stress, our selective hearing loss is very high. We don’t comprehend all that is being said.

At some point during the later part of this week the doctors sat down with my family members and said, “He’s extremely critical and we need to consider a transplant.” (The reactions I’ve heard to this point from various family members will not be posted here, out of respect. I was not “there” to witness what was said, the responses, etc ……… but they were all obviously positive)

So, after answering hundreds of questions about me and my life, then signing a zillion forms my name was placed on the national transplant list ………. Or was it placed on God’s list? Soon after this discussion my condition became even more dire and another meeting with the family was held. My condition had worsened to the point of where the doctor’s needed to now discuss with my family members the need of an artificial heart, right now. It was the darkest hour of this entire “event” for my family. I did not have to be told how various family members reacted, or even looked. I can see them, even now, months after all of this transpired. Another mountain of papers had to be signed to allow for the artificial heart installation/surgery.

As the family still wept for me, God intervened. Within 2 hours of signing the surgery consent for the artificial heart, the family was again called back in …….. But this time the news was better, good actually ……… THEY HAD FOUND A HEART!!!!!!

A miracle had happened. You don’t normally, if ever, find a match that quickly. It was a true miracle. What transpired over the next couple of hours are a blur to family members, but these were the last couple hours of my “old” life ……. the transplant team was on a jet to parts unknown.

It was time to be reborn.

Chapter 2 , The Rebirth – 

Reborn – Week One

I think this is going to be a fairly short chapter. This is mainly because I have no recollection of the first five or so of this week. I have been told that the transplant surgery itself went well, lasted about five hours and I was taken to the “Mother of all ICU’s” to start the recovery process.

After the first 5 hours I was in recovery, I started having breathing problems and was rushed back into surgery and underwent another surgical procedure to remove some blood clots that were in my lungs. This entire process took another 6 hours or so. Then I went back into the “Mother of ICU’s”.

My first recollection of anything was an X-ray technician using a portable X-ray machine and telling me he needed to take a picture. This was a momentary memory and maybe didn’t even happen. I can remember being totally confused as I drifted in and out of consciousness over the next 2 days. I couldn’t move (I was in “soft” restraints), I had a tube (respirator) in my mouth and down my throat. There was a wrinkled picture of my grandson nearby.

This picture had apparently been with me most of the time since the original heart attack. I had firmly clutched it my hand for days on end, dropping it only during the “code” events. I still have this picture and someday soon I will frame it for my den.

Other memories were my wife standing over me trying to wake me up. And when I did open my eyes, she would say, “Everything is going to be OK, go back to sleep”. At the time, I wondered why she woke me up in the first place. We still laugh about these moments ….. wake up and go back to sleep.

Other memories were the nurses. I had an ICU nurse right by my side, twenty-four hours a day. These people were great. I was told this and I also got to witness this first hand once I was totally conscious. They took care of everything, from watching all the technical stuff, like monitors, to the more mundane tasks like tying to shave me, trim my mustache, and take care of the other end of the business the urinary catheter and bowel management system. These last 2 things are something that people never think of. But, what does happen with your “wastes” when you are unconscious for almost 3 weeks. Well, they have “systems” that are place in you and they take care of “business”. (Unless they leak)

Hallucinations – Oh my, the hallucinations I had during these first 3 weeks were vivid. They deserve their own chapter since they were my only “reality” for a while.

At some point on the sixth day as I drifted in and out of consciousness I was made aware that my heart beat was not where they wanted it or expected it to be and they were going to implant a pacemaker in me. In my mind, this was the turning point in the recovery process for me. The ICU nurse that was with me the shift prior to the scheduled pacemaker installation did more than just take care of me, she probably saved my life.

Through ALL of the surgeries and procedures I had, I was never in pain that I can remember, except for one time. I remember as I started to regain consciousness that family members told me that I had some heart rhythm issues and they were going to install a pacemaker in me the next morning. (I still did NOT know about the transplant at this point) This didn’t alarm me at the time and later a nurse & Dr both came & told me what needed to happen to prep me for this procedure and then told me about the procedure itself.

Since I was in ICU at the time, I had a nurse 24/7. This particular time I had a nice nurse & the Dr was great as well. They explained to me that they needed to move a “lumen” from the left side of my chest to the right side. This lumen had a variety of thin wires that would go under the skin (through a small cut) and would be part of the “circuit” for the pacemaker and the lumen itself would be “stitched” to my skin. Anyway, late that night they started prepping me for the pacemaker.

The first lumen “installation” hurt like hell and I can remember the nurse kept telling me she was sorry …. a little while after they were done and x-ray was taken and soon after they were back telling me the wires went the wrong direction and the would need to do the installation again. The second installation hurt more than the first as I remember. I can still remember the “I’m sorry’s” being tossed around as I moaned in pain, but that didn’t make the pain any less bearable. After they were done, another x-ray …… and, YES, the same result with the wires going the wrong way. Soooo …. they tried this one more time. I can vividly remember the pain as they removed the lumen that was on me and installed the third one. It was intense, to say the very least. But, it was also a successful installation.

So, now I’m finally prepped for the pacemaker and have about an hour to “rest” before I’m gong to surgery. I can vividly remember they had the TV show “COPS” on my little 7″ TV and this show was in Philadelphia, and the cops were chasing a shooter through the ghetto, in & out of apartments, etc.

So, I rest for a little while and soon on one the cardiac surgeons comes in to see me ….. he has this amazed look on his face and starts twisting the knobs on my monitor, flipping switches, twists more knobs, takes out his stethoscope and listens to my chest ……. THEN HE SMILES …… He looks at the nurse ( masochist lumen installer) and then at me and says, “Your rhythm has corrected itself, you DON’T need a pacemaker”

True or not, I attribute this good fortune to the nurse. I think the shock and pain I went through corrected the rhythm …… and it’s been good ever since.

David Lettermen – After the long night in the previous section with the lumen and the pacemaker, my body and my my mind had my days and nights flipped around. I was awake the entire night during the lumen “installation” and I slept most of the next day. So the next night I was wide awake, still in the “Mother of ICU’s”, still hooked to all of the tubes, monitors, respirator and other life saving devices. But I was awake, alert and had a little TV, maybe about a seven inch screen, on a swivel over my bed. So I could pull it down about a foot from my face and watch it. Anyway, Letterman was on an he was doing a “thing” with a group of kids and he was firing off some classic one-liners. I mean great stuff, the kind of lines that will give you a stomach ache. When suddenly, someone in the ICU “codes” and lots of the nurses are running through the unit. They all have a look of “angst” on their faces, and at that exact moment in time people were laughing hysterically at Lettermen. For me it was a confusing moment …… Someone, a mere few steps a way was dying, or was in serious peril and somewhere else people are laughing. So, out of respect, I simply shut the TV off and laid there a while, silently crying, until I drifted off to sleep.

I’m just happy to be alive.

Chapter Three – Learning & Moving 

As I regained consciousness I have to admit I was confused. I had “lost” most of the last 3 weeks and had virtually no recognition of any of the events I had been through. I had a great nurse for the first couple of days I was at least semi-coherent. As she was taking care of me and asking me the usual “are you in pain” questions she also asked me if I knew what had happened to me. In my mind, the only thing I knew, or had been told concerned the triple by-pass that I actually had almost 3 weeks earlier. Anyway, during one of the times she was taking doting over me she asked me if I knew that I was their “miracle man”? I know I just gave her a blank, “duh, I’m stupid” type of look and shook my head negatively. She said, “Well, you had a heart transplant and you were in extremely serious condition”.

I was still on the respirator and it was almost impossible to communicate, so in my mind I assumed she meant I had a valve transplant, which I could remember being mentioned at some point, by some doctor. Thus, I didn’t pursue this “news” at this point.

However, the next day I had this same sweet young lady taking care of me. During a time when there were no visitors she made the same comments about me being the “miracle man”, the transplant and the like. A few hours later, they took me off the respirator and I could at least whisper to actually communicate. So, when my wife arrived, I casually mentioned that we needed to talk. Her response was, “Not now, you need your rest”. This scene would play it itself out a few more times over the next day and a half until I finally did “know”. I didn’t know all the “particulars” at that point, and I probably still don’t, even to this day. But, at least I didn’t have to give that same blank, “duh, I’m stupid” look each time someone asked me if I knew what I was there for.

Apparently, the family was told to shield me from the news for a while, so as to not shock me, or make me freak out so early in the recovery process. In retrospect, I don’t ever think I was shocked at all. But I do know as I laid there recuperating, if I would dwell on the word “transplant”, I would also think about death, the mortality of the donor, did I deserve this heart, and a litany of other questions. My wife was not giving me much information at this point, but then I really didn’t need much information either.

I will say that during those last two or three days I was in the “Mother of ICU’s” I did have a chance to observe the doctors, and there may have been over fifty of them. The nurses, of which there were lots and all of the techs ….. X-ray, inhalation, etc …… these folks worked together like a well oiled machine. I laid there and watched them to see if there were “issues” that could be a problem or if I could learn more information about my “true” condition from any of them. But, this team of people had one thing on their mind and that was
healing the very sick people and giving them their lives back. They are an amazing bunch of people, and always will be to me. True caring professionals.

At this point I’d been in the “Mother of all ICU’s” for about a week and the doctors felt I was stable, improving and could be moved to the “transplant floor”, where all transplant patients went after they were out of recovery or ICU. Thus, I was moved upstairs and into a semi-private room. Compared to where I had been in the ICU my new room was a palace. There was another guy already in the room (he had the window “area”). He was older than I was and it didn’t take me or any member of my family very long to figure out he did NOT want any idle chit-chat. He yelled at people (his family, I believe) constantly on the phone and told them he didn’t want any visitors. And for the 3 days he was my “roomie” he had ZERO visitors. This guy eventually went to have heart surgery, but not a transplant, so I never did figure out exactly why he was there. It only took a couple of hours for them to fill the bed. This time it was even “worse” my new “roomie” was an older guy that needed a transplant, but he was also VERY non-compliant about his med’s, his diet, etc …….. he was also in a constant battle with the nurses and staff over food / drink. One morning he was out in the hall
screaming at a nurse for a sandwich. Yes, he wanted a sandwich @ 330am. After 3 very LONG days they moved him to parts unknown. My last “roomie” was a gentleman that made me cry on and off for 2 days. He had been life flighted on plane from a location that was thousands of miles away. His entire family came with him. It was a very sad case, he was in dire need to a heart transplant, but after they reviewed his records and ran a few tests they found he had TWO different types of cancer, one which was incurable, thus making him not a potential candidate for a heart transplant. Plus, he was in pain. He was there 2 nights until they could arrange a life flight back to his home area. Plus he was in pain (even with meds). He would lay there at night and moan in pain and beg anyone to come cut an artery and let him “go”. Sad, very sad.

The doctors, nurses and staff on this floor were a bit different than in the “Mother of all ICU’s” and that took my family members a bit to get used to. No longer did I have my “own” nurse, all I had was the proverbial call button and I had to wait my turn. But, these people were all professionals and they were very good. The only real problem I had with them was they way things got scheduled. It seemed like every morning a few minutes before 8am I just HAD to go somewhere ….. X-ray, ultrasound, physical therapy, occupational therapy, etc, etc …… of course 8am was my medication time and also breakfast time. So I was late with my meds and when I could finally eat some things they had been laying there a while. Regardless, the staff was fantastic in all other respects. This was also where I would be “trained” ….. trained on medications, trained by physical therapists, trained on transplants, dietary needs, etc.

I did have some trouble sleeping during this week. My mind was coming to grips with my new reality and I would fall asleep easily enough, but I would be awake about 4am (they took vital signs every day about then) and could not go back to sleep. I would lay there and try to sort out, in my mind, what I was going to do, when I might be able to go back to work, how would I regain my strength and for the first time, I started to think about the financial implications of this ordeal. (Even though I was told not to worry about any of these items) Add to this a couple of the roomies above that were either seeking food or relief it made sleeping a bit difficult.

I’ll try to write this paragraph as delicately as I can. After being on various “appartuses” to assist with bodily functions for 3 weeks, I learned, first hand mind you, what that does to your body. First, muscles that send you “signals” now seem to scream these “events” to go at the very last minute. So, when you’ve got to go, you really HAVE to GO! Add to this the facts that they are analyzing ALL of your inputs and OUTPUTS, this means you have to “save” everything. Being that I hadn’t been out of bed, except for sitting in a wheelchair at times, for 3 weeks, it wasn’t like I could just jump up and go into the bathroom …….. it ALL had to be DONE right THERE ……… The easiest thing to use was the “jug” or the hand held urinal ……… I think you get the picture, so enough said.

Speaking of “jumping” out of bed, that brings to mind another traumatic situation. The first “walk”. I had been “upstairs” for a few days and steadily growing stronger and the Doc’s wanted me to walk. However, the first time requires a professional to show you how to get in/out of bed, how to walk and also drag all of your IV’s along. So, they finally get the physical therapist to stop by and “train” me in all of these matters and it’s finally time for my feet to actually hit the floor with the therapist’s assistance. I can’t even begin to describe my thoughts and feelings when I learned I was so weak that I could barely stand with assistance, let alone without. It freaked me that I had fallen apart so rapidly in just a few weeks. But, I tried and kept trying and eventually I was able to get out of bed and walk a few steps …… the next time it was a few steps longer, etc …….. eventually, I was able to get out in the hall. I was regaining some strength, but I also knew I had a LONG ways to go. This was going to be a long road.  

Good news and a set back. I’d been upstairs for a number of days and they were planning on when to release me to go home and recuperate there. Before I could be released they needed to complete a heart “biopsy” which is a fairly simple, yet invasive procedure where the place a catheter into the Jugular vein in your neck, run it down to the heart, where they take multiple tissue samples to analyze for rejections. It doesn’t take long, and it doesn’t hurt, yet it’s an eeiry procedure to go through. But, it’s a big part of a heart transplant patient’s life. So, I go and have my first biopsy completed an I remember that evening well, when the doctor came in and told me my results were GOOD. I called my family, they were all out to dinner, and let them know they could celebrate. And they did. It was a relief. Then, a few hours later, I had a minor set back. I was using the “jug” when I noticed a pretty good sized lump forming in my groin area. So, I called the nurse and she came and checked me immediately. By this time, after so many days & weeks in the hospital, I had learned to not even try to be “modest” and I certainly wasn’t embarrassed. Anyway, the nurse checks the “lump” and squeezes some clear fluid out of it ……. declares it’s not an infection and the doc will be here soon to check it. A bit later the doc arrives and declares it a blood clot. He says it’s not serious (but the lump is on me, not him) and off I go to have an ultrasound (actually 3 of them) and they verify it’s a DVT (deep vein thrombosis). I figure this is going to delay my release, but the doc’s & nurses aren’t worried. “We’ll teach you how to give yourself a couple blood thinner injections which will help” …….. And they were very serious, I tried to pass this “job” to my wife, but they said you can’t leave UNTIL you can do the injections YOURSELF. It turned out I did learn and I ultimately gave myself 2 injections every day for 2 months.

The last real order of business, didn’t involve me as much as did my wife. They would not release me until I had a FULL month’s supply of every medication that I was going to be on once I got home. The blood clot added another (very expensive) item to the list that she was running around picking up, because they HAD to actually see the meds. They take no one’s word on anything. This drug collection took her a day & a half and included a drive home to pick up meds at my local drug store, then back to where I was …… and my insurance only covered part of these ………… it was an expensive couple of days, but it needed to be done.

The last order of business was to tell everyone “goodbye” and be taken down for the long (scary) ride home.

Chapter Four – A month in numbers ~ 

The previous month can be summed up, to a degree, in numbers. 

 

One massive heart attack

Three paramedics

One ambulance ride (siren not included)

One heart cath

One more heart attack

One triple by-pass

Hundreds of tests ~ blood, X-ray, med’s

Fifty+ additional code blues ~ Lots of nurses and doctors

One – AED*       (know what that is?)

Seven days in the hospital

One week ~ total costs @ $89,000

One Helicopter ride @ $10,600

Second hospital

One week in ICU

Hundreds of tests and procedures

Fifty+ additional code blues

Two more surgical procedures

100+ doctors, hundreds of nurses

Infinite amount of tears

Infinite amount of sadness

Thousands of cell phone minutes

Prayer chains started, all over the country

One donor found

One donor gave the ULTIMATE gift

Three transplant surgeons on a private jet

2,000 miles or less traveled in the jet

Thirty+ people on a transplant team

Six hours of surgery

One beating heart

Five hours in recovery

One more surgery

Seven days in the “Mother of all ICU’s”

Dozen’s of great nurses

Dozen’s of great doctors

Lots of IV’s, hoses, wires

Hundreds of tests

One week on a transplant floor

Tens of great doctors

Tens of great nurses

Fewer tests

First month’s supply of medications – $4,091 (Over $130 PER DAY)

Over nine hundred thousand dollars – the total costs for 28 days towards a new life.

Four feet of scar tissue to help me to never forget

One prayer every day for the donor and donor’s family

One long, but happy ride back home.

Chapter Five – Back Home 

My ride home was a bit tense, and scary at the same time. Having not been outside (obviously) for about a month and leaving from a basically “strange” city was nerve wracking. Added to my nervousness was the fact that my driver was in his eighties and was not known as a great wheel man. Regardless, we made the trip unscathed. My position for this trip was for where it would be for the next six weeks ……. from the back seat, clutching what was referred to as my “coughing pillow”. (It was a heart shaped pillow that I held to my chest if I coughed, it helped ease as residual pain in my chest as my breast bone healed)

I can’t begin to tell you how I felt as we came up the street and I could see the house. It did not appear as I had left it. In the month I was gone I missed almost an entire season. Everything looked different, yet the same. During the drive home I was mentally preparing myself for the walk from the curb to the front door.
Since I had only been out of bed a dozen or so time in the past few days I knew that I had to pre-plan each and every move. Simple things that we all can take for granted, like getting out of bed, needed to be thought through completely. Scanning the terrain for obstacles was required, then the placement of each step, where could place my hands if I needed to hold something, even what could I use to help me lift myself up. They had given me a four legged walker at the hospital, but this wasn’t going to be of much help getting out of the car and up the 2 sets of steps to the front door. Thus, as we arrived I was thankful that none of the neighbors were around that could change all of my preplanning. I exited the car and made it slowly into the house with no real problem and with very little assistance. Once in the front door I knew I was half way where I needed to be, but I could rest in the living room before making the balance of my first planned trip home.

I was only half way to where I wanted to be because I was going upstairs in our two story house. My den, the bathroom and the bedroom were all on the upper level. I had decided I’d spend more time upstairs and come downstairs to eat and when I came down, I’d stay on the main level until I needed the bathroom and then I’d go back upstairs and stay there. Thus, trying to minimize the number of times I was attempting to climb the steps. This idea worked fairly well. It was a physical challenge for me to make it upstairs. As I look back on my “activity” log, the proud notes I wrote that first week were 2, 3 or 4 roundtrips for the day on the stairway.

Thus, I spent a lot of the first week in my den, on the sofa sleeper, watching TV. It was a bit unnerving at times, because the blood stain was still on the carpet from the day when I had the first heart attack and fell out of the chair and crashed into the desk, cutting my right eyelid. I knew at that time that when I was able, I was going to redecorate the den.

My had one relative that INSISTED on being in the area when I got home from the hospital. He had flown in the same day I was released and showed up soon after I was back home. He wasn’t actually going to stay with us, but wanted to be around to “help” as needed. Now, he’s an OK guy, but he’s kind of like a ferret on speed. He’s here, he’s there, he’s everywhere. He wanted a list of things he could do to “help”, so the Mrs sent him to the grocery. That was a great idea to get him out of the house, but would only last so long. By the time he got back, then dinner was made and it was then too late to start any real projects. But, I saw many things that I either hadn’t finished or seemingly fell apart in the past month with no one home. So, we discussed a few things that he could work on the next day. He would need a few supplies, etc.

So, I spent some time that first afternoon and evening in my den, I did go downstairs for dinner and stayed with family down there, the living and dining room a while. I remember having chicken and rice for my first meal at home. It tasted great. Then back to the den where I watched television and tried to get a grip on things that I had missed for the past month. Were the bills paid, what were the balances in the checking accounts, was there anyone I needed to call, etc. I started making my lists.

The first night of sleeping went a bit better than I thought it would. To say I was a bit nervous would be a huge exaggeration ……. I was closer to a maximum high stress level and high worries. I was freaking out inside, but trying to remain cool & calm on the outside. For the past 28 days & night I was on my back and always connected to something with wires, hoses, etc that seemed to keep me in place. Plus, I always had “professional” help seconds away by simply pushing the button. Now, if something would go wrong and 9-1-1 were called would it take too long to arrive? I worried the Mrs wouldn’t hear me if I called her. I worried that I was worrying too much. I made sure that I had a clear and unobstructed path from the bedroom to the bathroom. I made sure I had night lights on so I could see. (Note – I haven’t used a night light in like almost FIFTY years) I even practiced getting in and out of the bed a few times in the dark so I wouldn’t make a mistake in the middle of the night and injure myself.

Anyway, all the worry was not justified in any way, shape or form. I was so tired that I fell a sleep and slept well on my back. I did get up once or twice, but the only unexpected issue when that happened was that I woke up the Mrs and she’d startle me with “Are you OK?”. But, I got a good night’s sleep, and in my own bed. What a relief.

I was awake early, before any alarms and I laid there in silence. I was listening to sounds that I never heard before. Noises the house made, noises coming from the neighborhood, the birds, traffic on the street. I was just about ready to get up when the phone rang. It was the brother-in-law (ferret on speed) and he was heading to Lowe’s to get supplies and then he’d be over. Oh my, I wanted and needed some peace and quiet and phone calls before 8am were not what I wanted.

Regardless, the world was waking up, and it was time to wake up with it. The Mrs was going to help me with taking a shower. I had a very brief, but panic filled shower at the hospital before I left, but I think I hung on to the bars more than I washed myself. Of course this first showering event took a lot of preplanning, then explaining how things would happen, in what order, what I needed, accepting feedback, practicing getting in and back out etc, etc ……… It was another panic filled event, and of course it took forever, but I eventually came out of the bathroom clean, shaved and with nicely washed hair. I felt tried, but good and CLEAN!!!

The rest of this first 24 hour period at home was spent trying to get some rest and also trying to control BIL from running amuck as he attempted to “help” around the house and yard. I heard all kinds of commotion coming from the garage at one point, that was immediately followed by the alarm going off from one of my vehicles. Of course the alarm can only be shut off with the hand held thingie on the keys. Since that vehicle hadn’t been driven in well over a month the keys had to be found first. Then there were the never ending trips inside to see me about this or that. I finally got to the point where I asked the Mrs to take me down to the garage. So, for my exercise that first full day back home, we took a walk to the garage. The roundtrip of maybe 40 yards, total. Once I got to the garage I sat down on a bale of straw (don’t ask) an then started pointing out various tools and objects to BIL. It did seem to help quiet him down for the balance of that day.

The balance of that first full day at home was spent resting and answering calls for family and close friends. They all wanted to come see, but my doctors had limited me to a specific amount the first few days and weeks due to the chance of infection. I’m glad they couldn’t come over, it would have totally exhausted me to entertain.

 Chapter Six – The Next Few Days & First Test Day 

Trying to get to some level of normalcy after such an abrupt departure a month earlier wasn’t as easy as one may think. Trying to figure out how, when and where to get some form of exercise. Trying to figure out  where I was and take stock in what I had. Trying to figure out where I was going. Food / diet was another issue.

The next couple of days were very similar to my first twenty-four hour period back home. Trying to keep my brother-in-law from running rampant and needing things that only I seemed to be able to find. But, at least it kept my mind off of many other things.

This next day my wife went and collected our mail from a couple of different people that she had arranged with to stop by the house during that very intense three week period of hospitalization. She did that with her brother while my father-in-law stayed at home with me and acted as my baby-sitter. This went well for the most part, except I was upstairs so he would yell at me from downstairs to see if I was OK. He seemed to think I wasn’t because he couldn’t hear my responses. After having a tube jammed down my throat on multiple occasions during the previous month, it had left me with a very hoarse voice. Not much more than a whisper.

Regardless, he made multiple trips upstairs to check on me while I watched television. The hoarseness of my voice also allowed me to avoid a great many well wishers that would call to “chat” only to find out I was home, doing OK, but couldn’t chat in person. This helped a lot with my recuperation as it allowed me to conserve my strength, and I wouldn’t tire as easily.

Eventually, my wife arrived home with all of the mail for an entire month. Mostly it was junk, but there were some “get well cards” in there as well. And some bills (of course). At some point, during the time I was hospitalized, my wife figured she had better pay the bills. Normally, I always took care of this and paid them electronically. Fortunately, for both of us, I had paid them the day before I had the heat attack which covered 2 weeks and then she wrote checks for some others that came. Unbelievably, everyone got paid, and on time. Since I think we all use our own system, she devised her own as well ……. she looked at the statements on some bills that had come before I was airlifted and saw how I had paid the previous month so that’s what she wrote a check for. It’s still amazing to me that everything was paid, and paid on time. The only issue that came up was balancing the checking account after a month …….. it look me almost another month to get everything where I knew it was right down to the penny.

When I was released from the hospital it was with the understanding that I’d be back in three days so they could check and at that time I’d have the first on my outpatient tests that I’ve had ever since. But, I was so happy to just be going home, that I didn’t mind the fact that I’d be right back in three days for the testing.

Before I was discharged, one of my transplant coordinators wheeled me around the hospital and showed me where I’d go first, second, third and so on …….. Well, that was all well and good, but since I had only stepped foot in this institution once fifteen years earlier to visit someone and this time I came via helicopter and then through a doorway on the roof, I had no clue where I should actually even come through the door on the street. At the time of the orientation, I was worried about it, but once I had to do it on my own, I was plenty worried. My wife had a much better “lay of the land” as she’d be roaming the halls now three weeks. Between the two of us we did eventually figure out where I needed to go ……..

Since I was still very weak and couldn’t walk but maybe 20 yards at a time, we knew we would have to go to the hospital and stay in the guest housing the night before. So that’s what we did. Another “white knuckle” ride in the backseat, clutching my heart pillow back to the hospital. I can honestly say that it “looked” totally different than what I thought or remembered it looked like. When I was released just a few days before I was picked up at the door and too busy talking to family members to even notice what it looked like on the outside. We checked into the guest house and the next order of business was to find some dinner. Not an easy feat, as I remember, but we did eat something. The Mrs. also located a wheel chair in the guest house and took me out for a “drive” after dinner. She pointed out various places, things she noted during the horrific previous weeks she spent there. At one point, she pointed down a side street and said, “When you first got here, you were in a room down there” and she pointed off to her left. I asked and then pleaded for her to drive me down there. Not so much as so I could see the window of my room, but more so I could see
if I could see the trumpet player that was playing the blues the day of my arrival. Turned out, he wasn’t there, but it was a good “drive” all the same.

We went back to the room, slept and were awake very early in the morning. I was so slow shaving, taking a shower and getting dressed that we needed lots of time. We also needed to pack up and check out of the guesthouse. We were able to take a shuttle bus over to the hospital, and we found the first area quickly and took care of the administrative items. And started to go to the second area. (I was glad I took some note a few days earlier, that at least I knew the area numbers, and that helped a lot.)

The second area was the initial testing area. I still go here each time I go for a biopsy and check up. This is where they do a urine test, X-ray, multiple blood tests ( from 7 to 18 vials) and an EKG. Once these tests are completed, I move on to the heart cath / biopsy area.

The cath / biopsy area has a large waiting room. If I had to guess, there’s seating for two hundred to two hundred and fifty people. A single television is on one end, a coffee machine near the center, and the desk for the staff at the other end. When you arrive at the biopsy area you check in at the desk, they tell you if you what position in line you  are ….. first, second, third, etc. There’s so much stuff going here, it’s hard to explain. People waiting for family members, hospital staff running around and other patients, like me simply waiting my turn. I described the biopsy procedure in chapter three, and the only this I  will emphasize here is that it’s NOT a painful procedure, but it is a bit unsettling for me as I can feel the catheter sheath going through my shoulder and chest each time they take a specimen.

After this procedure is completed, I walk back to the waiting area, collect my things and move off to yet another area, check in at the desk and once again I wait my turn. This area is the last stop. I will first see one of the heart transplant coordinators. They are all RN’s and they are very good at what they do. Once I get into see them they will ask me their standard hundred questions. (How do you feel? Any swelling? Chest Pains? Numbness? Etc? Etc?) They will also give me a physical, checking my blood pressure, and a hundred other things. The coordinators will also answer my questions, make suggestions and so forth. They are a great bunch of people, almost like friends. After the transplant coordinator is done, then I wait in the same room for the cardiologist on duty to come in. These are a great bunch of people as well. They usually aren’t there as long as the coordinators, but give their own abbreviated physical, paying more attention to what the hear through their stethoscopes. Once the doctor is done, I’m free to go.

Since this was the first of these visits, this trip seemed like it took a very long time. In retrospect, it did, because we went the night before. After we were done we drove into the city and had lunch at a very swank restaurant, as a celebration. Then it was the long trip home, with me riding in the back seat with my pillow.

By the time we got back home, we had enough time to have dinner with bother-in-law before he needed to catch his flight back home. After he and father-in-law left, we were home alone for the first time in the truest sense of the word. The house was quiet, yet I could almost feel my wife’s tension, or worry as we settled in for the evening. I told her to not worry, but to embrace each extra day.

Chapter 7 – The First Month

The first month after my heart attack and subsequent transplant was one of growth and healing. Most of the month was positive, but there were a couple of minor setbacks. At the time, I didn’t see the growth, but as I reviewed my notes and think back I did have a remarkable recovery.

Setbacks – I had a couple of minor setbacks. After the results came back from a couple of my blood tests, my potassium level was high. This is not a good thing as the high potassium can cause heart rhythm issues. So both times, I was give a prescription to help me “shed” the potassium and then I would have to have a follow up blood test. Food was also a MAJOR issue in regard to the potassium issue and I had to make numerous radical dietary changes. It was bad enough to be on a low fat, low Sodium diet, but then adding to that mix a low potassium diet it made eating difficult for a while. The anti-rejection medications I am on was the major contributor to the increased potassium levels. I had to completely give up tomatoes, or anything that was made from or contained tomatoes. It was like cutting off half of my diet. Other items I had to give up were celery, anything with chocolate, made from wheat, etc ……..

Testing – This first month I had to go to the transplant center each week to have my standard blood and urine tests, chest X-ray, EKG and heart biopsy. Each time seemed to go a bit better, maybe a bit easier for me. Maybe it was because my comfort level grew with each visit. But I think I also felt better as my physical abilities grew as well and I could walk from place to place, instead of being drove in the wheel chair. Even the blood clot that had formed in my groin before I was released from the hospital seemed to shrink through the month. My results were primarily good for this first month and my medications were being adjusted after each test.

Physical Fitness – After the first few days at home where I would walk to the garage and back a couple of times a day which was a walking distance of maybe only 60 to 80 yards (total) a day. Soon after my brother-in-law had left to go home I was sitting in my den early one morning listening to the sounds of nature pour through my window and I decided I needed to have a more defined fitness regiment. Later that day we started and I walked approximately one hundred yards and then returned home for about two hundred yards total. The plan was, to mark that spot each day and then exceed it by at least ten yards the next day. This worked well as I remember. I don’t see anything unusual in my notes from that period of time. My next door neighbor had given me a “get well” gift basket that also contained a pedometer. I wore it faithfully, still do as a matter of fact. By the end of the month I had built myself up to nearly five miles a day.

Right before the end of this first month, I was reminded that I’d need to start “Cardiac Rehab Phase II” before long and I was given a prescription for this as well. We called to simply ask a few questions and the next thing I know is I have an appointment for an orientation. I personally didn’t think I was “gym” ready, but I went and talked with them. I’m going to write more about this in another chapter.

Organization – One thing I saw as a potential issue before I was released from the hospital was not only the amount of medications I was prescribed, but also how to track these, find cheaper sources (if possible), know when to order, etc. I spent a lot of time setting up my medication plan. I also setup e-accounts with my health insurance company and a mail prescription company so I could start to track some of the things that I knew were going to eventually bombard me. At the same time I set up a new filing system for all of the insurance statements, so I could keep a very close eye on them. All of these steps became very valuable. We started keeping track of things right away and it helped later when a few issues came up and we could look up the exact statement or even previous comments made by the insurance company employees since we took notes on each phone call made. Overall, the whole process went fairly smooth, but there were times when there were situations that came up. And, at the same time, I was trying to be an informed consumer and hoping that no one was over charging, under charging or not billing and there would be a surprise down the road. I didn’t have a lot of physical stamina that first month, but my mind seemed to be working very well.

Family & Friends – Slowly, one by one, the family would stop by to see me. Almost everyone in my family had last seen me at my worst when I was in the hospital, on life support and unconscious. It was interesting to watch their expressions, the looks on their faces that first time and to see that look of relief. In their minds, and they admitted as much, they all thought I would look ghastly. I was skinny, but I thought I looked the same. At least with clothes on. Without the clothes though, I thought I looked like a Rand-McNally road map. Actually, I still think I look like this.

Work – I had very limited contact with anyone from work. I was instructed when I left the hospital to avoid, as much as possible, contact with my actual job ….. In other words, it’s OK to talk with your friends from there, but avoid the stress of my job. I was also told when I was leaving the hospital that it was highly unlikely that I could ever go back to what I was doing due to the high stress, environmental concerns and physical demands of what I did. So, as time progressed, I started to look at my options. I’d analyze this, that or another scenario. While this started the first month, it actually continued for many months until I was sure what I wanted to do and that my wife was sure what she wanted to do as well.

Reflections of this month – It was truly a month of growth and rehabilitation. The month I spent in the hospital and everything I had gone through took me to the lowest point I’d ever been in my life. But, I realized that I had been given another chance, and I needed to make the most of it. I was given “extra” days to spend with family & friends ….. And each “extra” day was precious. It was an emotional month. A month of learning. A month of growth. A month …… Of “extra” days.

 

Chapter 8 – Cardiac Rehab Phase 2 – 

Before I was discharged from the hospital following my transplant, I had to go through what they called a physical and occupational therapy evaluation to make sure I could “ambulate” around the house, get in and out of the back seat of the car properly, bend over to retrieve something from the floor and various other everyday tasks that we take for granted.

In my opinion, my physical condition had deteriorated so dramatically in the previous month that I felt like I was not able to pass these fitness tests and that they were feeling sorry for me. During this testing I met a couple of great people that talked to be about how important all this “fitness” stuff was and then, amazingly, my cardiologist comes into my room a few minutes after I get back and hands me a prescription for “Cardiac Rehab Phase II”. At this point, I didn’t have a clue what it was or what could be expected. Since I live quite a distance from the hospital where my transplant was performed, and due to insurance coverage, they permitted me to complete this program at a hospital that’s close to home, when I was ready.

But, after a few visits to get my weekly (at that time) heart biopsy they were asking me, in a polite sort of way, if I had started the “Cardiac Phase 2” program yet. Of course I hadn’t and I didn’t feel like I was able to go the gym and pump iron, which is what I had envisioned.

A few days later we were out running errands and we thought we saw the place where this program would take place, but where we stopped was actually a weight loss clinic but they were “kind” enough to call over to the cardiac rehab facility and PROMPTLY set up an appointment for an orientation.

I was moving around slowly at this point and I was walking in the range of 3 miles a day, but that includes walking in the house, outside and well as my rehab walks. This is next to nothing compared to what used to be my normal 18+ miles on a normal work day. So, the bottom line for me was I was still very weak.

Orientation Day ~ This was an experience in itself. I was scheduled to go in the late afternoon and I thought that was strange. Why at the end of the day? Well, once I found out “why” I was glad it was later in the day. When we arrived we met a nurse who gave me the ever present, always required “forms” that needed to be filled out. Once those were completed and duly noted, the nurse gave us a tour or the new, very well lit, very well equipped facility. Then we sat down so she could review my forms and history …….. well, OMG, you had a HEART TRANSPLANT??????? That was the highly exclaimed question she asked when she got to that portion of the form. The next comment was, “WE”VE NEVER HAD A HEART TRANSPLANT PATIENT HERE”.

Ouch, not an overwhelming testimonial to their rehab program, was my thought at the time. Anyway, she took me through the rest of the questions, checked my blood pressure and glucose levels and then showed me how I would attach the monitoring device EVERY time I came in to rehab. It was a wireless device that is worn in a pouch and the 6 leads go to the sticky pads that you place EVERY time you come in for rehab. This device is a remote EKG and told them how you were doing before, during and after each session.

Next was my “test”. I was put on a treadmill and she slowly had we start walking. Now, if you know anything about treadmill speeds, then you will know that 0.7 miles per hour is like slower than a baby can crawl. She had me start at 0.7 MPH and we worked all the way up to a whopping 1.2 miles per hour, which would also be my starting point.

Last but not least she explained that I would be meeting the rest of the staff on Monday when I arrived. Plus I was given a choice of times for my class session and it was explained that there were nutritional classes one hour before the Monday & Wednesday’s sessions. (Normal sessions were M-W-F, for an hour)

Monday, my first class. Since I was still riding in the backseat at this point I was captive to the Mrs wishes, since she was the designated driver. And she wanted to attend my first session. We arrived an hour before so we could both sit through the nutrition class together. There were 3 other people in the class in addition to the two of us. The class was OK, even though at this point I’m not sure exactly what the specific topic was that day. The Monday classes were all about food, reading labels, knowing the good from the bad fats, etc …… all nutrition, all the time. There are 6 classes in this series and ultimately I attended every one of them, but I have to admit they were BORING. I already knew how to read food labels and I have never been easily caught by the “Low Fat” or “Low Calorie” advertising. The proof is on the label. It may have reduced fat, but what about the sodium content? And, as it became very important for me, what was the potassium level?

Anyway, the Mrs attended the nutrition class and then we walked next door so I could get “suited up” for rehab. In other words, try to get my wireless monitor on and operating before going to the nurses station. It was a good thing they had a picture on the wall that showed the right wire went to the sticky pad on the left shoulder, the green wire went to the sticky had on the right abdomen and so on. I would never be able to remember these. Once I was “suited up”, I weighed in, filled out a little slip of paper and walked to the nurses desk to “check in”. This was the routine for all 26 sessions I was required to take for Cardiac Rehab Phase 2 ……. put on the monitor, weighed in, checked in at the desk, and declared if I had any Med changes since my last visit (or orientation), if I was feeling OK, and then the nurse would take my blood pressure and make sure my monitor was showing on her screen.

On this first session, is when I met “Mike”. He’s a younger guy and has so much energy, that he’s on the hyper side. He’s also very knowledgeable in this field. After my discussion with the nurse during orientation in regard to I’d be the first heart transplant patient, I made it a point to ask him some very specific questions. While this particular program had never had a transplant previously, he had and he explained to me what his approach would be. With “normal” cardiac patients, the goal is to increase the heart rate significantly and hold it there throughout the work out, then return to the resting heart rate. In my case, my new heart was “wired” to beat faster. My resting rate is usually 88 to 90 and my awake and walking around rate is about 100 – 102. The goal for me was to slowly increase the rate, but with more of a focus on my blood pressure. He had an exact formula for all the other patients that were based on their BP & heart rates, their age, the med’s and dosages they were taking. But in my case, the drugs were all different, my heart rate was different, my BP was higher and my overall condition was much poorer, for the most part.

I also met another RN, that would be with us through 95% of my classes and 2 very cute, very young technicians that would assist Mike in watching our speeds or rates, as well as taking our blood pressures. The class consisted of 3, 10 minute exercise intervals at speeds or rates that they gave you and you had to maintain these. For my first class, it was my option to choose any piece of equipment to work out on so I choose and did all three sessions on the treadmill. As I grew stronger I would later branch out to the bikes, rowing machines and the elliptical’s. During this first session there were 4 other guys there, but 2 of them finished that day and the other 2 finished on Wednesday of that week, which was my second session. However, they were quickly replaced by six other guys, and they would be with me through the balance of my time there.

As my session ended that day, I could see a relieved look on the Mrs face as I got off of the treadmill and we did our stretching exercises and I had my closing BP taken for the session. I remember laughing a bit as I was doing this work out that she was a bit like my Mom taking me to kindergarten the first time. But, she stayed in the corner and I observed her talking to the nurse only one time.(professional courtesy type of thing) Later she told me it was too stressful for her to watch me, so she elected, for future sessions, to simply drop me off and come back after me when I was done. And, I was truly fine with that.

Over the next two sessions the “change of command” happened. All of the people from my first session had “graduated” and the new guys started to join. It was actually funny and a bit confusing as there were two of everything ….. two Denny’s, two Don’s and two Ricks ……… what was truly amazing was that all of us had or did work for the same company at one point, and everyone knew someone else. You could simply throw a name out in the middle of a session and someone, or multiple people, would know that person and tell a story or two …. we had an interesting group. It was interesting because we were also spread out in regard to age. Guys in there 40’s to their 70’s and all with different levels of cardiac issues from angina to my transplant. I’m sure there were times when we had the staff mesmerized with our stories. I also learned during my second visit that on Monday’s the class was nutrition and on Wednesday’s the class was on heart health. Thus, I did learn a number of things in that class as I’ve never been a student of medicine and anatomy.

So the days and weeks of cardiac rehab moved forward and I became a junkie. A gym rat. I had this “need” to exercise and I still do. I’m not there now pumping iron and looking at myself in the mirrors like many others, but I was going to initially to help my recuperation. The month in the hospitals took me physically to a place that I never would have ever imagined. I was at a point where I could not stand up by myself and if anything scared me, that was it. I was weak. I was at the low point and I was determined to get myself back into a much improved condition.

As the weeks went on and the number of sessions grew so did my comfort level, energy level as did my rep’s, mileage, speeds, etc …. as I got to the period where I had 5 or 6 sessions left I started to investigate if I could continue in that program. The answer was a no, it was only cardiac phase 2 and you could only do that program once and then you had to move on to cardiac rehab phase 3. So, we started calling around and we weren’t learning much. So, one day I looked up every gym within a 25 mile radius of home and we went and visited each and every one of them. We saw what they had to offer, what the costs were, how knowledgeable the staff was, etc, etc. I know we spent way more time on this than the last time I bought a new car. I had my selection all narrowed down when the Mrs proclaimed she wanted to join and go with me. Well, that changed things because sometimes the pricing was cheaper, because of my heart condition, or due to a family plan, etc. Anyway, we finally decided on one place and joined there before my last session in Phase 2.

My final “test” was a simple one. Very similar to the orientation when I initially started. I put on the monitor and we started at 1.2 MPH, which was my beginning speed and then went up to 3.8 MPH with a 1% grade which was my ending point. They were happy. I was ecstatic. I was on the road back.

Exercise frees the body and the mind. It relaxes us and lets us float.  

Chapter 9 ~ My Dreams or Hallucinations ~As I wrote about in Chapter 2, I was really never in any pain, except the one time that I mention in regard to the “lumen” they were installing. When I mean never in any pain, I mean from before I had the heart attack, until I was back home with my new heart a month later. Now, I’m not saying I am tough and went through this remarkable series of events on my own. Far from it.

I’m not sure what pain med’s I had, but I know after my transplant I was on methadone. Yes, the methadone they used to give heroin addicts, maybe they still do.

Do I even remember feeling “high”? No, never.

Did I ever have any of the “out of body” experiences or the bright white light at the end of the tunnel during any of these events? No, not that I can recall at any point.

What I had was a series of what I will call drug induced hallucinations. They weren’t like my normal dreams, when on those rare occasions I did dream. These were, at times, multiple episodes that would end and come back later with another “chapter”.

I’ll start with the easier ones and work my way to the longest and more enduring one.

The Hummer – 

Now, I’ll assume you know what a Hummer is. It’s the large SUV that was first made popular through it’s military use in places like Iraq and other war type zones. Later it was changed into the mother of all SUV’s for the rich and famous.

I’ve always been a Ford and VW type of guy. I’ve had small Ford Ranger trucks for close to 15 years and my wife liked VW’s. I had only one small SUV, a Ford, which I still own. I always liked these vehicles for their economy, looks and durability. If I ever dreamed about owning an expensive vehicle it was the desire to have a Porsche, Corvette or Ferrari. Not a huge gas guzzling SUV.

Anyway, one of my ongoing hallucinations was in regard to the purchase of a brand new Hummer H3. I can see the dealership, the salesman and General Manager, the actual negotiating process and even the signing of the papers at the end of the deal. All of it is very clear.

This was not a single event, but I can’t tell you how many events it was. It started with walking into the dealership with my wife and ultimately ended with us driving away in a bright red Hummer H3, with black leather interior and all kinds of electronic and computerized gadgets in the dash.

Like most of these hallucinations ….. when I regained consciousness, I would inquire as discretely as I could where it was “real” or just my imagination ……… I can remember asking my wife not long, maybe a couple of days, after I regained consciousness if we had recently bought a new vehicle ……. NO, was the response so I never offered any details. What is interesting that ever since, when we have seen a bright red Hummer H3 on the road, she will mention how good they look …………

The Condo – 

I guess that after spending a lot of money on a Hummer, that my mind also needed a new place to live. So, yes, I also bought a new condo. It wasn’t necessarily the buying of the condo that made this so weird, it was more where the condo was and why I wanted it.

First, they say when buying property that location, location, location is very important. So, in my mind it must have been very important. The condo was on a large lake that does exist and is less than an hour from where I live. The problem is the town where I bought the condo does NOT reside on or near any body of water. It would be like moving Dallas, Texas to the coast of Florida or something. Very strange.

Again, I can remember us taking multiple trips to this property, looking it over, negotiating, writing the check and signing the papers, even picking out the color choices for the various rooms. But, what really caught my eye about this property was the fact that it had a boat dock. I had to have the boat dock so I could buy a boat (I did, in my dreams) so I could go fishing. Now, I haven’t fished in literally decades. Probably over thirty years.

So where did all of this come from? Who knows and I’m not analyzing it.

Where was I ? 

2 other ongoing hallucinations I had had to do with 2 distinct different hospitals, other than the two facilities I was actually in. I’m thinking that my mind knew I was in the hospital, but the old gray matter got scrambled during the time I was unconscious. I won’t name the cities, but I have visited each city a couple times in my lifetime. But, I’ve never been to any medical institution, nor ever had any medical need while briefly in either city. Both cities are large, both cities are hundreds and hundreds of miles from where I live and from each other. One is north and one is south. It was quite puzzling and as I regained consciousness, I did have to ask where I was. Even at that, I was so confused, but the Dr’s said that was quite normal. One interesting thing I remember was that in one of the facilities that I “visited” all of their “equipment” had “E-bay” stickers on them. It was like everything was purchased from E-bay. In the back of my mind, I really was here. And, in the back of my mind, I wonder if this was where my new heart came from ……………….

The Big One ~ 

There was one memory that was the strongest was this is the last one that I’m going to try to describe. This one seemed to go on and on for days and days. The memories are a bit sketchy at in places, yet very vivid and real for the most part.

It stated off as I was taking off in the helicopter from hospital #1 and going to hospital #2. There was a wealthy guy waiting to land on the hel-i-pad for us to take off. As he waited he had told his staff to find out who was in the helicopter and whether the patient was a veteran. He was told about me and my condition, and that, in-deed I was a veteran, as had been my father, brother and father-in-law.  

He instructed his staff to invite me and my entire family to a gala veteran’s memorial event he was planning in the “capitol” and wanted me, my wife & my father-in-law to appear on stage with him a large list of dignitaries that included very famous politicians, actors and actresses and sports stars during this huge event.

I have vivid memories of shopping for a suit for me and a dress for the Mrs. I have vivid memories of planning our trip to the “capitol” (was never sure if this was Washington, or some state capitol).

Where it gets fuzzy is who was this wealthy person. I remember that he was perhaps from the Dakotas and had made his millions from developing and patenting some kind of very high tech cutting and polishing of some “black” rock that in my mind reminded me of onyx. I can still see his helicopter, which had a gray background, but was decorated on both sides with a huge eagle that swept backwards towards the tail rotor. He was very patriotic and supported the troops for a long time and in many ways.

After I regained consciousness I asked my wife, “Did you buy a dress?” (For the event). She looked at me like I was from a different planet and started to probe me in depth.

As I recalled these memories from my family as I grew stronger they were a bit in awe. The Dakotas had been mentioned as a “distant” place for an organ to come from when they told the my family they had located a heart. There was a range for the hospital’s jet and that equated to an amount of time to keep the organ viable. And, the Dakotas are like a foreign country in these parts. My family still “picks” at me from time to time about my “patriot” friend. But, I don’t care and I laugh with them.

When all is said and done, I think I’d rather have these memories than the reality they had to endure as I was unconscious and hooked up to dozens of hoses, wires and machines.

And who knows, maybe someday some of these “memories” may become reality.

Chapter 10 ~ Does it Hurt to Die?

 

Recently, a friend of mine on a heart transplant network I belong to asked me …. “Does it hurt when you die?”

I had been considering this topic for a chapter here on my site for a while, and his question stirred my thoughts enough to start writing.

In my case, and in talking to others that have “died”, yet lived to see another day, the simple answer to the question is “NO” it does not hurt to die. However, in many cases the hurt is there and it is real right up to that last breath, that last heart beat …….. which then leads to a calmness. Peace, quiet, tranquility are other words to describe the sensation. There is no pain, just a drifting sensation into nothingness.

However, this is only the feelings of the person dying, in my opinion. If they have unfinished “business” here, in this world, they could leave a tremendous amount of pain for those that they left.

These pains can be very real and very physical, to those that are left here ~ Thus, it can hurt when you die.

In my case, maybe the better question should be …….. “Are you AFRAID to die?”

For all of my life I was afraid to die.

Afraid of the unknown. The darkness, the light, God, the devil …. afraid of all of it.

Afraid …… as described in the next few paragraphs.

Afraid of dying in places where I may not be located. And much of this goes back to my career where I was often in the darkest, gloomiest, filthiest places on earth … alone. I always had a conscious thought when in these situations to not die here. In retrospect, I had my heart attack in my den and not in some filthy hole in the ground 50 feet below the surface. For me, that was a blessing.

Afraid that I had unfinished business here ……… and I did. Actually, I still do.

The unfinished business is more than just the financial impact. For some a death could make people wealthy (insurance, etc), but for others a death will financially hurt people. This can cause people to hurt.

The unfinished business can and will always contain things that are more “subjective” that objective.

“Subjective” in that the person that dies may not have “finished” their “job” or career, or maybe they didn’t finish that term paper at school. Though others are left, in most cases, to take over for you and do what you did, it can still “hurt” to a degree.

Even more subjective are things that I think can “hurt” those that are left are the thoughts that were never spoken to another ….. those simple things where we didn’t tell someone we loved, that simple little phrase, “I love you”. Or, called that long lost friend one last time, looked up an old relative in a nursing home to brighten their day, simply said “thank you” to someone that did something as simple as hold a door open for you … all of those thoughts that we have, that we don’t act on. All of those times we have to tell people nice things, but don’t. All of those lost opportunities that can cause “hurt” if the death is untimely, unexpected ……. yes dying can hurt.

Afraid that my loved ones didn’t know how much I do love them …….. and their love for me. This is the pain that causes the tears at funerals. The loss of a true loved one.

Am I afraid to die now? Maybe a little, but nearly as much as before my heart attack and subsequent heart transplant. I’m very conscious of telling people I know the nice things. If I love them, I tell them, if someone has done something nice for me, I thank them, I appreciate them. It might even be a stranger, but I try to express gratitude, openly and honestly. I watch my words in an effort to try to not to hurt anyone. Life is too short for battles, but I will voice opinions if I’m asked. I try to reach out to old friends, if I can find them. The love we have for other people is buried in most cases. I saw this in the amount of people that came forward when I was very sick. This love was overwhelming. I try to pay it back, and have many to return this love to.

So, “Does it hurt when you die” ~ Yes and No.

When you die it doesn’t hurt, the hurt remains here for others to deal with in their own way.

21 Responses to My Story

  1. Linda Mowrer says:

    You are a wonderful writer and a very brave and strong man. My daughter is one of those wonderful ICU nurses in the “Mother of all ICU’s” and she loves her job very much. I am very grateful to you for writing about your experiences and to her for sharing with me about you. God Bless you.

    • my2ndheartbeat says:

      Linda, Thank you for the nice comments. I am VERY grateful for all of the nurses. They do have a difficult job. Please tell your daughter for me, “thanks” for all she does …… it matters and it does make a difference.

  2. Tom Johnson says:

    I agree with Linda, you are very articulate.
    I must also say, you are something I really need at this time, I will come back and read more.
    Thanks
    Tom

  3. Bob Moss says:

    I enjoy reading your story and noting similarities to my own. I am the guy with R.J.’s Transplant Tribune. I will look forward to new stuff from you.

    Bob

  4. Allie says:

    Wow, you gave a great account of your story!

  5. denisa says:

    i have started your story, but emotionally, had to stop after chapter 2. however, i will finish it. at this time i am completely overwhelmed with information and emotion and can only “research” in short waves.

    my mother is in HF and is looking to receive an LVAD in the next few days (if tests results come back today showing another procedure will not give the heart the relief it needs). the LVAD will be a bridge to transplant, so she will also be on the transplant list.

    it is all completely overwhelming, scary, fascinating, and amazing. and with god’s will, she will have a successful LVAD surgery and short time on the device before a heart is available. then comes the thought process knowing that a life was lost for her to continue her life. that is a huge hurdle to leap also.

    many blessings to you and your family!

  6. tgagirl74 says:

    thank you so much for writing your experience. I am on the wait list for a donor heart. Your writing gives me comfort.

  7. my2ndheartbeat says:

    TGAGirl,

    Thanks for the nice comment and I hope your wait is short. If there is anything I can assist you with in regard to your transplant journey, please do NOT hesitate to ask. I may not be an expert, but I have been down the road. Might I ask which center you are listed at?

    Don at My2ndHeartBeat@gmail.com

  8. Mark irwin says:

    I was 1st informed that I would 1 day require a Heart Transplant aged 20, I am 48 next month. I have been on the waiting list for 2 years now. The long drawn out process of finally reaching this point has been a very rough and rocky road. I have endured a lot and faced my mortality on several occasions. I have been ready to except my fate for some time now, of course as long as I remain on the list I have hope and that is all I need to keep fighting. I could never get across my 28 years of struggle as eloquently as you have managed to do, I commend you for that, it’s great to hear someone put into words the struggle and the scars that are caused by this type of trauma. If luck comes my way I don’t think I will ever be able to relive these hard times as you have been able to do. So I thank you for sharing your story and putting the thaughts in my mind into words that somehow help me understand why we are the way we are when dealing with this extreme challenge.

    Regards Mark

  9. Wendy says:

    This is such a beautiful blog. It’s just so beautiful how others are connecting with you through your story (the comments are really a testament to that). You give so much hope to others.

  10. CW says:

    Really inspiring blog. 🙂

  11. CW says:

    I learnt to love my life even more after my surgery. Thank you for the motivating story.

  12. adriana says:

    that was the ‘mother of About pages’ that I have ever read. It’s incredible to think that your heart attack and transplant happened in one month… wow, you are one really lucky man! Thank you for sharing your journey, I thoroughly enjoyed reading it. It’s really nice to meet you…

  13. Swati Atul says:

    best wishes to you . Stay Blessed 🙂

  14. Ms. A says:

    Don, when I first read this and started following you, my son had just received his first LVAD. Little did we know, at that time, that he would go on to receive a transplant. I just came back today, to reread this. Reading it again, after my son’s transplant, gives a whole different perspective and much greater understanding of all the things you discuss, right down to the hallucinations.

    I am going to send him a link to this and I hope and pray he will read it. I feel he could learn so much from you!

  15. Mandy says:

    I’m actually friends with you on treatment diaries and you posted this website recently. It took me a while to read it all. But I was absolutely amazed. Have you thought about putting it together into a book?
    Have you found out what an AED Is yet?
    Your Story is truly inspiring and now your quotes that you post daily seem to make better sense to me. Thank you so much for sharing your story

    • DAP says:

      Mandy, Thank you for your nice comments. Yes, the AED is an “Automated External Defibrillator”. I have no real or firm plans for my collection of stories and quotes. I am thinking one day I’ll print out a few hundred of my posts, collate them and give to my grand-kids.

      The journey continues ….

      ~ DAP

      • number 68 says:

        I received a heart transplant over 19 years ago. The heart beats strong and steady. Right after the transplant I was treated for cytomegalovirus,MRSA and rejection. I lost the vision in my right eye from CMV infection about 6 months after the transplant. I feel very blessed to be going strong after all these years.

      • DAP says:

        Thank you so much for your comment. It is folks like you that helps to keep me focused, keep me positive and pushing forward. Glad you are doing well. Keep on going! ~ DAP

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