In the Beginning - part 1

Perhaps it would be best to start out by describing what the last 6 years have been like, as far as the heart is concerned. So, I'll start at the beginning and bring everyone up to date.

It all began on President's Day in 2003. I was trying to move furniture around in my living room...if you're single and you have no significant other to do it for you, this is just something you deal with. But I noticed that when I was trying to move things around, my heart raced and I tired easily. Now, in fairness, I was not in the best physical shape in the world so at first I attributed it to that. But a couple of weeks later, during Spring Break, I developed insominia and found that every time I tried to lay down I would spit up water. I thought I'd developed some type of upper resp infection and went to my primary care doc for help. He thought I had started to develop asthma or something like that and prescribed meds. But after about 2 weeks with no improvement, an appointment was made with a pulmonary doctor. Having a previous bout of sarcoidious in my '20's, I thought this was a reasonable move.

Good thing he did. After some rapid tests, Dr. Schelbar called to tell me my problem was heart related.  He set me up with Dr. Endsley and promptly told me that Dr. E was the best heart transplant doc in the state, and would not be surprised if I eventually had to go that route. Talk about a shock to the system! That was the last thing I thought would be going on....I was thinking SARS which was a popular disease at the time. Dr. E is hard to get in, so Schelbar's call got his attention. We set up an appointment for a 3D echo and sent him my previous blood work results. Dr. E is a very straightforward guy, which personally I like. He does not beat around the bush, which to some people come off pretty cold but I don't like people who patronize me....I want the truth and I want it now. Be careful what you wish for!

Dr. E told me that I had cardiomyothopy, which is basically heart failure. He wanted to do a heart cath and heart biopsy to see what we were facing and check to see if my previous experience with the sarcoid or some viral infection could be the cause. He put me on some meds for blood pressure, beta blockers, potassium, and lasix to remove fluid. I promise you, I lost 30 lbs of fluid that weekend. I developed such a respect for pregnant woman and their bladders at that time, let me tell you!

The tests were to be done right before Memorial Day weekend and the day before the end of school. He told me it would be an outpatient surgery and that I could be back to school the next day with no problem. I was prepped and stuck with needles in my arms. Now, understand that I absolutely hate needles and that you are wide awake during this procedure. Bascially, they stick a catheter into you arm (at least they did for this first procedure), run a little grasping thing through your veins to your heart, check your pressures and valves then take a few small pieces of tissue to be tested. Things were going great...we were talking and he was explaining what he was doing. I remember looking up at the clock and noticing it was just before 8am and I started thinking that I'd be home and back at work the next day with no problems. Then, I don't remember a thing but I swear I heard someone say, "uh oh".

Apparently, Dr. E got a little too aggressive with the 3rd or 4th biopsy section and preferated my heart, causing blood and fluid to start leaking into my chest. My blood pressure dropped almost to nothing and he had to work for about 90 minutes to get me stablized. They put in a tamponade and finally got my blood pressure back to where it should be. Now, Dr. E had told my folks that the procedure would take no more than 30 minutes once I left the preop room and when they hadn't heard from him 90 minutes later they were starting to get worried. I've been told that I wouldn't be here if it wasn't for the skills of Dr. E. I was the first of over 3000 of these procedures that he had done for this to happen. When they stablized me, he came out and immediately took responsibility and filled my parents in. He told them that the next 24 to 48 hours would be very critical.  In fairness to him, I knew the possible risks going on...it is just unusual for things to happen.  It showed how bad my heart was getting.

My parents called my brother Rob and his wife Susan, my co-workers at my school, and some friends at church and the Emmaus organization that I was involved in and asked for prayers. I remember waking up in CICU and trying to get up because, I was going back to work. I had a drainage tube in my chest and the nurses (God Bless Them!) were trying to keep me down in the bed. Eventually, they had to restrain me and give me morphine. I don't remember much else about that day but I've been told I was pretty funny. I apparently had conversations with Rob and Susan about chairs in the closet ( I have no idea where that came from!) and was telling some parent off about how they were raising their kid (now that....I could believe!). In the meantime, I've been told that the waiting room of CICU was filled with coworkers and family (part of the problem of being the child of a parent with 8 siblings and a parent of 2 living siblings, all of who have LOTS of kids!). I started to come out of it in the early evening, and one of my best friends, Lisa, managed to get back to see me for a little bit. I knew whatever was going on was serious because she grabbed my hand and held on tight....really unusual for her to do but as a future reference, very comforting to someone who doesn't know what is really going on. (I hope you never have anyone in that situation but if you do, don't be afraid to hold their hand!)

Later than night, Dr. E told my folks he was concerned that I had started leaking blood again and wanted to go back and repeat the cath procedure to make sure. This time, they had put in a central line in my subclavean and he could go in through it with a camera to check things out. I heard he actually ran down to the CICU waiting room to tell my folks that things were ok and there was no leakage. They decided that I needed to eat something so I tried some red jello (this will be important soon) and my parents and brother started coming back more often and I began to be more responsive. My minister and my cousin came back to pray over me as well. About 9pm, Rob and Susan brought another friend, Amy, back to visit then Susan went back and let my mother come back. I was talking away with them then I started feeling queasy, and all of the sudden I told Rob to grab a trash can. But, he wasn't fast enough. Now, what you need to know right now is that my brother and I have a bad gag reflex...if anyone loses their lunch we're right there with them. And I did....all over his shirt....red jello.....that looked like blood. Amy left in a hurry (I've never let her forget that), mom was yelling for a nurse, and poor Rob was still trying to get me the trash can while dealing with a chest full of red jello. The nurse came running in and remembered that she had just fed me the jello and started yelling, "It's jello, not blood! It's jello, not blood!" and things began to calm down.

They all went home after that to clean up and rest, and I slept for a bit. But my blood pressure kept dropping through the night and I was visited by a couple of docs who were on call and worked with Dr. E in his practice. At one point, the night nurse became really concerned and asked me if I wanted her to call my folks. Knowing how stressed they were, I asked her not to unless I started to code...which did come close to happening. I started to pray to God that if it was His will that I leave this world, to go ahead and take me. But, and I will swear to this till my dying day (although I've not told many about it) I distinctly heard a voice tell me, "It's not your time to go, My Child. You still have things to do." And suddenly a feeling of peace just came over me and I finally began to sleep. My vitals began to stablize and things began to improve.

Since I obviously couldn't go back to work, some of my coworkers began to come up and check on me. I was still a little out of it but I was improving. Dr. E came in to check on me and apologized for what had happened, but I told him I was always the kid who had trouble with every medical issue I had ever dealt with. He referred to me as his "problem child"....a name that still is in use! About noon on Saturday, they took me from CICU and moved me to the cardiac floor, which allowed more family and friends to come by. Now, on the Sunday of Memorial Day our family decorates graves and has a big BBQ at our house, and I really wanted to be there but knew that I would probably not. Amy offered to come and sit that morning so my folks could continue with those plans but about 10 am, here they walked in. And about 30 minutes later, in walked Dr. E. who said, "For someone who I tried my best to kill you look pretty good". He released me to go home and to only work half days for the next 10 days then to rest all summer. We made appointments for him to check on me the next week. Needless to say, I appreciated the gathering with my friends and family (although I didn't go to the cemetary....that was just a little too much to deal with!).

On Tuesday, Amy's daughter Katie drove me up to school so I could say goodbye to the staff and thank them for all their concern from this "procedure that became an ordeal". I moved pretty slow but was grateful to be there with them. For the next 3 days I stayed home then came in to work on half days the next week, although I did very little.   But it was great to begin to get back into a normal routine.

My summer was spent gathering strength, adjusting to new meds (Coreg was added), and an occassional trip to Branson when I felt like it. I went back to work in late July and continued to see Dr. E on regular checkups and regular echo's. In November of 2003, I underwent a series of tests to see if there was some improvement....there wasn't. It was at this point that Dr. E began to talk about the possibility of heart transplant. Still in a state of denial, I just new that drugs were going to be my saving grace.

In March of 2004, Dr. E wanted me to have an internal difibulator inserted in my chest. His fear was that my heart was weakening so much that if I had a heart attack I would die before I could get any help. Now, to do this you have a small incision on the left side of your chest and this 2 inch by 2 inch metal object is inserted under your skin. Wires are sent to your heart and your heart is stopped to make sure the difibulator works.........yes, the heart that the doc is not sure will start if you have a heart attack will have to be stopped to make sure it will work if this thing kicks in. A very scary thought!

Once again, family gathered at St. Francis (we're beginning to know the hospital inside and out by this time) and they do the procedure. Again, you're awake during this thing talking to the nurse (who gives me some dirt on Dr. E) about how you are the "problem child" and that things that normally don't happen to others seem to happen to you. Luckily enough, there were no problems with the surgery and all went well. What didn't go well was that fact that I was in a room with a nut case (that got changed shortly) and that when I was supposed to be dismissed by noon the next day and was still there at nearly 6pm, I got just a tad upset with the poor nursing staff. Anger management was not something that worked well with the meds I was on!

In May, Dr. E told me that the medication was not working as he hoped and it was time to start talking about going on the transplant list. I had some concerns, primarily taking a heart that some child could use more than I since I had lived a decent life. I asked if we could wait till August to give me some time to think about it, and Dr. E agreed. He also gave me the name of a patient of his that lived in Stillwater and asked me to contact her and visit about the transplant process. She had her transplant about 7 years ago and had actually had to live in the hospital for a while before. We met Deb over my birthday weekend in July and she explained her experience and success and put both my folks and I at ease. One of the best things she said was that God would choose the heart that would be right for me, just as He would choose the heart that every person in my situation would need and that I should not feel guilty about any of it. In August, I told Dr. E that I was ready to go on the list.