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Oct 28, 2008

Katie Update fromt he beginning.

Alright, so before the fun begins I thought I would write an update of what has lead me to this point.
Last Tuesday, October 21st, I went to work like any other Tuesday. I had done most of my weekly reports Monday so that Tuesday would be quick and painless. Of course last Tuesday I had to finish the budget which I had also started Monday, but silly me didn't save the file as a new file only the temp file which by Tuesday was gone. So I finished my Tuesday reports except for the bills which needed to be coded when Karen got to work. Since I was done with that it was time to work on the budget.. oh joy! Around 10am or so I was working on the budget and Karen came in and asked me a question. As I turned to look at her I got a really bad dizzy spell that lasted for quite a while. When it didn't go away after a few seconds I started to get worried but continued to do my work.
About 30 minutes later I got slightly dizzy again and my chest started to hurt. At that point I called Daniel and told him I was going to call the doctors and I might need him to drive me to the hospital. I called both my cardiologist and my primary care doctor (who is actually and internal medicine doctor, so when I can't get a hold of my cardiologist I can call him and he has some extra experience with hearts.) After about 10 to 15 minutes an internal medicine nurse called me back and said that they wouldn't be able to get me in so to go to an ER. I decided that I would go to the Urgent Care Center at Langley Air Force Base instead of an outside hospital because that is where my doctors are stationed. I have had bad luck with going to hospitals where my doctors are not and getting sent home with out proper care.
Once I got to Langley I was taken into the back very quickly. It is amazing how fast they can move when you say you are a cardiology patient with chest pain. With in 10 minutes of being taken to a bed my Internal Medicine doctor came in saying that he saw I was hear and heard a rumor that a patients defibrillator had fired. Knowing that I had one he thought that it was me. He told me that he had called my cardiologist and he was on his way. After I convinced them that my device had not fired they calmed down. They tried recreating my dizziness to see if it was an inner ear problem that had set me off. When they were unable to recreate the world spinning they decided to give me fluids because I was slightly dehydrated as a result of the cold I was finishing getting over. They told me that I am much more susceptible to dehydration from a cold and it is something that would affect me more than a person with out my disease.
After the fluids were pumped into me they came back in to see how I was feeling but the chest pain I had was still there. It was decided that I needed more fluids so I was admitted. They didn't want to pump in the fluids with out me being admitted because they didn't want me to say I felt better just to go home. If I was admitted I had to stay for at least the night. So I stayed in the hospital for observation Tuesday night.
On Wednesday, they did an echo which results were the same as previous echos. Because they had no obvious reasons for the pain they sent me home with some pain killers and told me to come back if the pain got worse. The only catch was to no go back to Langley as they do not have the tools that would be needed to care for me.
I stayed home from work on Thursday and Friday to get some sleep and rest so that I would hopefully feel better. Instead a headache that I was starting to get in the hospital was getting to bother me so much I wasn't able to sleep well and my chest pain was increasing, especially when I was trying to do things to stay slightly active.
Saturday morning when I started to wake up my head hurt so bad that I couldn't open my eyes so I tried to sleep longer and when I finally woke up I was feeling decent. I had thought about going back to the hospital but because I wasn't that much worse then when I left the hospital I figured I would be okay. But on Sunday, that was a different story.
On Sunday I woke up with an insane craving for McDonald's pancakes. To fulfill my craving (and to just shut me up) Dan took me to get my pancakes. Once we got home and I ate I was hanging out on the couch and was starting to hurt again. The movie Hook was on so I just tried to concentrate on that and convince myself that the pain wasn't that bad. After a short while I was on my right side in a ball with my right arm under my head and my left arm over my head with my hands clasped squeezing my head with tears in my eyes. My head was hurting so bad, along with my chest pain I couldn't take it. It was time to visit the ER again.
Dan had wanted to wait to take me until Monday but because I was in so much pain we went to Portsmouth Naval Medical Center ER on Sunday afternoon. When we got there I didn't even get out the whole reason I was there before they were telling me to come into the back. All I had been able to say was "I have a heart disease and I am having chest pa....". They got my vitals and an EKG in triage and then moved me to a bed in the back for monitoring. They gave me fentinal fairly quickly for the pain because I was hurting so bad. The ER called in the on call Internal Medicine doctor to evaluate me and then he called my PNMC cardiologist. He said he didn't want to make a decision to keep me or send me home, that was up to my doctors.
Obviously... My doctor decided I needed to be admitted. They brought me upstairs and started to get me settled into a room with an older lady. With in 30 minutes they were moving me to a private room because the conclusion about my headache was that it wasn't a simple headache I was having a migraine and needed a dark and quiet room. They put my on oxygen and more fluid and started giving me a stronger pain killer. The IV beeped at me for one reason or another all night which sucked but I was able to get some sleep and with the oxygen, pain killers and dark room my head started to feel a bit better.
On Monday they re-did my echo and started discussing options. One thing they want to do is change one of my medications to a new medication. With the change they have to wait until one of my medications is out of my system. Because it is a new medication they need to monitor me on it for the first day or so therefore I was told I would be staying in the hospital.
As they continued to discuss my case and what should be done they decided we were finally out of options and needed to do a heart catheter to check my stent and other measurements from the inside of my heart. They want to check the pressure of the muscle and see how many of my arteries are being pinched shut as my heart pumps. This procedure should be happening very soon. (it is 7am and they told me around 8:30am).
After the procedure is done they will look over the results and discuss the next option. While speaking with both of my cardiologists, if there is a problem with my stent, more arteries need to be stented or the pressure is just to high (or other problems that may arise), the next step would be open heart surgery.
This surgery is the one that was discussed and planned my senior year of high school. We made it all the way to the night before pre-op and then the surgeon called and said he was not comfortable doing the surgery. He felt at the time that the risks were greater than the benefits and that he was the not the best surgeon to do the procedure under those circumstances.
This surgery has been discussed and swept back under the rug many times over the past few years. I know your thinking "So why now". My doctors feel that we have exasperated all other options at this point and I am still having pain that at this point is only getting worse.
The surgery they want to do consists of 2 parts. The first part is called an unroofing or unbridging of the L.A.D. (Left Anterior Descending Artery).This condition is also known as myocardial bridging. The procedure will remove muscle that has grown over the artery and is now pinching it shut with each beat. The part of this artery that goes deepest into the muscle is where my stent is, however the artery worms its way through the muscle and is embedded it multiple areas.
The second part of the surgery is called a septal myectomy. In this procedure they will remove some of the extra muscle that has grown into my ventricle. My septum is 3.3 centimeters, a normal septum is approximately 1 centimeter.

So that is where we stand at this point. Whether I am having the full surgery or not is still unknown but after going threw previous caths and knowing those outcomes I know that the chances of surgery are on the higher side.


I have tried to make this as easy to understand as possible, but for more information here are a few sites that explain the procedures.

HOCM (the disease itself)
be careful googling the disease as it is a common disease in cats so most sites that come up are about cats.
Hypertrophic Cardiomyopathy Organization

Septal Myectomy
Myocardial Bridge (look closely at pictures.. Fig 1A & B>

Another option that has been on the table before is an alcohol ablation. It is similar to the septal myectomy but is less invasive. For this procedure they would do a heart cath and put alcohol into a particular spot of my heart causing a heart attack to kill off some of the extra muscle. The doctors here are not fans of the procedure, especially in my case. Even the doctor who brought the procedure to the US who I have had a consult with says that I am not a good candidate.
Here is a website that compares the alcohol ablation and the septal myectomy.
Comparison

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