Seven years ago, I had so many things going on in my life. I worked at City Hall as the Assistant to the Mayor. I volunteered at our food panty and worked for Jan Paschal at the Every Child Is Ours organization. I was responsible for a job program we utilized at City Hall, managing a group of teens and a group of senior citizens under a job stimulus grant. I was responsible for two festivals in our town, Hometown Days and our Fall Festival. I was the Vice President of our Chamber of Commerce. I put together fundraisers and pancake breakfasts for our Student of the Month award at our high school. I was in charge of decorating the town for Christmas. I wrote grants for the city. I was the President of the North Jackson County Democratic Women. I was on the Library Board and I was on the Jackson County Literacy Council Board. And I organized the Christmas Parade each year, my favorite. Throw in four school age children and two dogs. I was busy, to say the least. I loved it. I was going all the time. My children volunteered right along with me. That is all behind me now. Today my goal is to hem my curtains. I may or may not get this done. It’s been a goal for about a month. Feeling useless is a daily battle now.
Five years ago is when I first started not feeling well. I was tired all the time and I had absolutely no energy. I drank those incredibly healthy energy drinks (wink wink) by the handful every day. Which made me feel even worse. I would wake up in the early mornings having chest pains and feeling short of breath. I was going through my divorce at the time and I was so busy. I just chalked it up to being stretched too thin.
I eventually went to see my family doctor. He put me in the hospital and started running tests. Everything concerning my heart came back clear. On the day I was going to be released, I woke up early and began having terrible chest pains. They started doing blood work up again and they ran an EKG. Again, everything was normal. Our hospital was so small that we didn’t have a full-time cardiologist. Dt. Ashwood came to Newport every thursday, and it was thursday. My family doctor, Dr. Green, asked Dr. Ashwood to consult and after a brief description of my symptoms, he called for an ambulance to take me to Sherwood, a small town outside of Little Rock, where he planned to do a heart catheterization. I was diagnosed with Coronary Artery Spasms. He knew what was wrong just by the symptoms I was exhibiting. This disease is also known as Prinzmetal Angina. The key symptom here is that it only happens at rest. It is not brought on my exertion. I was put on a nitrate medication and sent home.
This condition is extremely rare. When the coronary artery spasms, it causes all kinds of trouble. Unfortunately, this trouble doesn’t show up on any of the standard heart tests. This has been a problem for so many that have this disease. It is regularly misdiagnosed. I have had to learn to become a tenacious health advocate for myself.
My biggest problem has been, most doctors do not know how to treat this. I was lucky enough to find a cardiologist that was very knowledgeable about this. When Ken and I got married, his insurance required me to go to NEA Baptist, as this is where he works. I had to change family doctors and find a new cardiologist. Fortunately, I found a wonderful family doctor here and he stays on top of this. Because the doctors in the ED usually have no clue about this disease, my doctor will direct admit me and I go straight to a room and he writes the orders. Ironically enough, all of the hospitalists are very aware of what course to run with this and I have received excellent care from all of them. I fired my cardiologist, or rather, Ken did. I will admit I think he is a great heart doctor usually, everyone loves him. He is also an egotistical ass. Because he can’t see anything on an EKG, I have nothing wrong with me. Period.
As I have aged, there has been a steady progression of this condition. I now wear a nitroglycerine patch all the time. I also keep sublingual nitro with me at all times. Well, I am supposed to. Much to my family’s consternation, I forget it a lot. The spasms come in clusters. I may go months without having any sort of chest pain at all, then it starts again. I usually end up in the hospital for six or seven days with a nitro drip and morphine. The combination of those two things usually pull me out of the cluster. This is exhausting. And scary. Although a heart attack is possible, the real feat is that the spasm will throw me into a deadly arrhythmia. When the artery spasms, it cuts off blood and oxygen to my heart. As this has progressed, the spasms have steadily gotten worse. When I have them now, I can feel my heart beating differently. I am always hollaring for Ken to get his stethoscope. He is always calm and cool. This is why God sent him to me, I’m sure.
If you have been friends with me on Facebook over the years, this is what is happening when I am in the hospital for my heart. After I come home, it usually takes at least a week to begin to feel human again. This takes a huge toll on my body. This has also led to vaso-spasms in my brain. At least that was the thought until I got my MS diagnoses. I have had a few TIAs although they aren’t sure which disease to attribute it to. I was in the hospital for this in March of this year. It’s now August. I’m hoping I don’t have any more clusters this year.
This is scary for my family. It’s overwhelming for them. Being in the hospital for a week and then recuperating for a week puts a burden on my family. They never complain. They bring me treats and toys to entertain me. Everyone pitches in to make sure everything moves along smoothly.
There is practically no research being done for this disease. I read everything I can get my hands on. When I talk to my doctors about this, I am usually the one who has found something new. I belong to a site called heartsisters.org. There are so many scary stories on there. Here is the link if you’d like to look at it.
I am thankful for all of the prayers from my friends and family. When ever I ask for prayers, the response is overwhelming. I have made it this far, with my sanity in tact, because God has answered all of those precious prayers. Thank you.