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Archive for April, 2010

Still in summer 2006, recovering from lung illness. Time again to visit Dr Kwan. Today we had an echo cardiogram. Ultrasound of the heart. He found some very interesting things. First off, very clearly looking at us was a golf ball size blood clot just sitting at the bottom of my left ventricle. It was there because my ejection fraction (ef) has slipped to a number unreadable. Dr Kwan said it was less than 10%, and to him that is the same as zero. Something had to be done now to help give my heart some pumping power or I would surely die. Let me try to explain: my left ventricle is shot. It doesn’t function at all. When the rest of my heart wants it to contract, it just lies there and does nothing. So, when the right side fires (electrical message to beat) the left side doesn’t push back. No squeeze. Instead it’s like a punching bag that is pushed on one side. It just swings. Dr Kwan said there is a new devise out called a bi-ventricular pacemaker with defibrillator. He thinks that will help. I did my best to find something on the internet to share with you, but there is too much. It is too complex. If you are curious about the devise, look up bi-ventricular pace maker, or “cardiac resynchronization therapy” CRT as it’s called. This Dr Kwan believes will buy us some time and keep me alive. Preparations were made at the Air Force’s Wilford Hall Medical Center. Wish me luck!

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(summer 2006)  I spent a week in the hospital. I had tubes placed where no man should ever have tubes. I coughed a lot. The problem with coughing was two-fold. First, when I breathed, and especially when I coughed it hurt a lot. Not your regular “man up” suck it in hurt. This was worse. Secondly, when I did cough, I often times passed out from insufficient oxygen to my brain. The answer was simple. Morphine. Lots of morphine. But wait.. doesn’t morphine suppress your respiratory system.  Why yes it does. After a couple of days they had to move me to Oxycontin. This was the first time I got this drug. It wouldn’t be my last. After lots of antibiotics, breathing treatment and other things, I was ready to go home. Well I was ready to leave the hospital. This trip to the hospital took a huge toll on my body. I was weak and could barely walk. I was promoted to a wheel chair. I could no longer stand to take a shower, so I needed a bench and safety bars built into the shower. A friend of ours, Tom stepped up and did this. For the next week or so I slept with a huge foam wedge under me to help slant my body while I lie down. I was still coughing and the pain in my lungs was still significant. Doctors agreed that it would take several weeks to heal. When I was in my house, I used my cane, or the walker. Everytime I ventured out though, a wheel chair was the vehicle of choice. This was the beginning of a very hard time for me, and an impossibly difficult time for my wife Denise. She was now responsible for caring for an invalent whose mind is now fast asleep in oxycontin-ville

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Before I get started this morning, let me say this about Dr Kwan: I have never met a more dedicated  and caring doctor. He has his ways, but in the end, he’s usually right. I would trust him with my life.  In fact, for over a year, I did.

The summer of 2006 wained on. Lots of trips back and forth to the hospital. Then one night, after fighting what I thought was a cold, I began having chest pains. Stabbing, intense chest pains. …..What the hell? This isn’t my regular chest pain.  Oh no. I was sick. I thought I probably had pneumonia and heart failure. It was however getting worse, so in the interest of breathing, my wife called the ambulance. Another ambulance ride to BAMC (remember, Brooke Army Medical Center). After a while in the Emergency Room, the doctors declared I had Pleurisy, and, in fact they would go on to say pleural effusion. For all of our sakes, here is a definition of what we are talking about.

The following definition is courtesy of “MedicineNet.Com” Pleurisy: Inflammation of the pleura, the linings surrounding the lungs. There are two layers of pleura; one covering the lung and the other covering the inner wall of the chest. These two layers are lubricated by pleural fluid. Pleurisy is frequently associated with a pleural effusion (the accumulation of extra fluid in the space between the two layers of pleura). Pleurisy causes a stabbing pain in the chest aggravated by breathing, chest tenderness, cough, and shortness of breath. Pleurisy can be caused by many conditions including infections, collagen vascular diseases (such as lupus and rheumatoid arthritis), cancers (such as metastatic lung cancer or breast cancer), tumors of the pleura, heart failure, lung embolism (blood clot in a vessel to the lungs), obstruction of lymph channels, trauma (rib fractures or injury from instruments in the chest from an operation or car accident), certain drugs (such as Hydralazine, Procan, and Dilantin), abdominal processes (such as pancreatitis, cirrhosis of the liver) and lung infarction (lung tissue death due to lack of oxygen from poor blood supply).

Turns out there were several contributing factors. For now though, please just put me in intensive care and help me breathe. Oh yea, that is where I am and that is what they are doing.

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The big smoking question was out there, and fast too! I heard myself utter “yes” as I cowered back from the small doctor. (Excuse me for paraphrasing the following discussion. I couldn’t possibly reenact it accurately) Firmly, a bit angrily  and with a big dose of “how could you?” he said “well, you can’t have a new heart if you smoke. I am not going to give a precious new heart to someone who doesn’t care about his own health. I couldn’t possibly trivialize the great sacrifice a donor family will offer by giving their gift to a smoker”….yada, yada, yada… for at least 5 hours he ranted. Well it seemed like 5 hours. In reality, maybe 15 minutes.  The bottom line with smoking is I must have proof of stopping for 6 months before they’ll list me. He calmed down. “That’s ok”  he said. “You are not in immediate need of a heart, and we have a lot of work to do to prepare”. You might be asking yourself how the doctor can get proof I don’t smoke. Well blood work of course. Nicotine is a chemical. Chemicals can be found in blood. I needed lots of blood tests over an extended period of time to check for nicotine levels. I guess I really am going to have to quit. That’s ok. At this point, I really don’t like smoking anyway. I will get the patches. After we all calmed down about the smoking, he got into the program details.  I would need to see a dietician, a pharmacist, a psychiatrist, a hemotologist, a pulmonologist, an immunologist, the surgeon and the surgeon’s team. Each one would have me for at least an hour. Each one would be scheduled at different times and each one would have their own set of tests they require, also scheduled at different times. We began the ordeal. Three, sometimes four visits to the Transplant hospital every week. Every week, the same  routine. Go through admin. Pay your deductible. ( that’s always first ). Go to the lab. Then go to whichever doctor needed to see you on that day. It was a hectic pace for me, and a hectic, and stressful pace for my wife and kids.  Initial tests revealed I was eligible for a new heart. Time will tell if I will actually get one. In the mean time, my health continues to deteriorate. Will I even live to see the new heart? At this point in time, we didn’t know.

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ANYWAY, like  I was saying,  back in the summer of 2006,  hobbling  into the Methodist Specialty and transplant Hospital in San Antonio, my wife Denise pushing me along, we got through the administrative stuff. Up to the cardiology office. Why do I struggle with the word “cardiology” ? Even now I wanted to spell it with a capital “C”. Do you think there is some sub liminal message to be had? I don’t know. I think it’s just that I can’t spell. If it seems like I am stalling at this point in the story, I am. After the last blog an odd sort of thing happened to me. A wave of memories and emotion over took my sensibilities. I couldn’t help myself. Re-living these moments is not going to be easy. Not from this point. It gets dicey here and I think I am a bit afraid to exam that time period. Even my daughter did not want to comment in the blog , along the way. She definitely did not want to re-due this part of our lives. My wife doesn’t either. Must be pretty scary. Enough stalling.

As I entered the door of the doctor’s office, the first thing that struck me was that it was small, and under decorated. No pictures on the walls. No carpeting or soft lights. I didn’t see a single decoration. A plain, cold, and small waiting room was all there was. Behind the frosted glass window was the receptionist. I approached. “Hello” I said. “My name is Brian Hayden”. That was all I need say. At that point she greeting me and whooshed me into another room. Hmmm. A moment later a very nice lady came by. She had lots of papers, 3 – ring binders and books in her arms. She will be my lead nurse. The one I always talk to when I go to the hospital. The one I call if I have questions and the one who will guide me and my family through this ordeal. She began talking to us ( by us I refer to my wife Denise and me). The nurse talked about the whole process. All the different doctors that will be involved, the various testing they will do before, and after the transplant, and tons more. it was overwhelming. As I stopped to catch my breath, almost as if cued.. the door opened. Through it was a small man. Very thin, probably older than he looks…. Holding out his hand…..”hello, I’m Dr Kwan. DO YOU SMOKE??”

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So here we are, summer 2006 and I am ready to go to my first appointment at the transplant hospital. By this time I have both a walker and a wheel chair. My walker was the racing style. You know the kind, bicycle looking handle bars and brake handles. The paint: metal flake blue with a leather seat.. Oh yea baby! It was hot!! I beckoned all the racing style I could muster. I strapped on my oxygen, grabbed the handle bars and wabbled slowly into the building. The one thing I  immediately sensed about  this place was the relaxing atmosphere. It was almost like a funeral home.  Oh, in fact some of the patients that I met while I was there used to call it the waiting room for the funeral home. In truth, people there were very serious. They were afterall dealing with patients who’s “clocks” are definitely winding down.  That’s why they insist on taking care of billing prior to your visit.  Twenty dollar co-pay please.  Ok, now you can see the doctor. It is difficult to convey to you the enormity of the process of getting a new heart.   As I make this attempt to do so I will consolidate 12 months worth of visits into as many blogs. A hundred visits to doctors offices,  a dozen trips to emergency rooms and  as many hospitalizations.  Throw in at least three ambulance rides along the way and you have a glimpse at what our year was like. So lets enter the transplant era. God help us.

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It has come to my attention that some of you think I am getting a heart transplant.  I am not. This blog is roughly base in chronological order.  Please allow me to recap and fill in some dates for you. I was in Brooklyn from the summer of 2004 untill winter 2006.  We drove back from Brooklyn around January or Febrary 2006. A month or so later I went to the Social Security office. That, of course was followed closely by my last blog…all 2006

I appologize for the confusion and, as we move forward will tag each blog with a date for reference. Mind you though. The next couple years get pretty hazy, so the dates will not be specific. Thanks for reading along. I am pleased to say that nearly 600 people have tuned in to the blog since I began. Not everyone at once of course. Please feel free to comment on the blog if the mood hits you.

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