Coping With Endocarditis

Last summer, in the evening of Monday July 30, I did not feel well. I felt like I had a fever. I took my temperature and it was normal. I felt sick all the next day and when I took my temperature in the evening, I did have a fever. Not high but a fever. (I normally run a low temperature - a degree or two below “normal.” I went to bed. On Thursday, feeling no better, I called my Primary Care Physician and spoke to a nurse. She told me it was probably a flu and would last a week to ten days and to call back in a few days if it was not improved. A day or two later, I called back and went to see the doctor. He told me to drink at least a gallon of water a day and to call back if I was not feeling better. I did so a couple of days later and he sent me for blood tests.

During this time, I was weak and tired, running a fever, sleeping a good part of the day. I had occasional chills and soaking night sweats. After four or five days, my doctor called and told me to make an appointment with an Infectious Disease specialist. This was scheduled for two or three days later. She interviewed me at length and sent me for blood cultures. She called me the following evening and told me to check into the hospital via the Emergency Room. She told me I had endocarditis and I was put on IV while they identified the exact infection that I had.

I was also given an MRI and an Esophageal Cardiogram. After five days, a pick line was inserted and I was sent home the next day with a portable IV. I stayed on this until September 5. The pick line was removed that evening. My I.D. instructed me to floss and use Listerine Cool Mint mouthwash, and to follow the premedication for dental work.

At this point, I should say that I had been diagnosed with a heart murmur a couple of years before this and that I always premedicated before dental procedures.

My doctors said that did not know why I got endocarditis. My cardiologist said that he thought it was a “freak occurrence” and that freak occurrences rarely recur. (However, one of the high risk factors is having had endocarditis before, so it must recur.)
If you don’t know why you got something, it makes it difficult to know how to prevent it.

I had another echocardiogram and my cardiologist said that he wanted me to have a catherization. I had decided to get a second opinion at Brigham & Women’s Hospital in Boston. This was because I live only an hour from some of the world’s best hospitals and it seems silly not to go there and also because they do some alternative techniques such as robotics and minimally invasive valve repair and/or replacement which have shorter recovery times.

Three days prior to my scheduled catherization in Worcester, I met with my cardiologist’s partner who would be doing the procedure. When I told him that I had a second opinion scheduled, he said then that they would hold off on the catherization. I asked him off the record about surgery and he said he thought in a couple or three months.

On October 11, I met with my B&W cardiologist. He looked at my echocardiograms and then had me get one there that day. He said that he did not see surgery for years to come. He did tell me later, however, that he wanted to wait until I was stronger. He also said that he was not a dentist but he would not floss.

I called a friend of mine, an endodontist, for advice. He recommended getting a teeth-cleaning, a complete set of x-rays and a periodontal exam. I did this. My friend and I also discussed addition prophylactic precaution possibilities such as longer medication or even IV. I called my I.D. doctor but she dismissed these possibilities saying that she had given me the literature calling for 4 ammocillan before dental procedures and did not seem receptive to any new thoughts.

I then went to my new dentist, recommended by my endodontist friend. He seems knowledgeable and empathetic. He told me his father had died from endocarditis complications. When I told about the Boston cardiologist’s reservations about flossing he said than was the stupidest thing he’d ever heard. He sent me to a periodontist for a comprehensive exam and instructions on how to floss and brush, what kind of toothbrush, mouthwash and toothpaste to use. (My dentist also gave me advice on this.)

I decided to get a third cardiology opinion so I made an appointment with a cardiologist affiliated with Beth Israel Hospital. This doctor did not understand why they wanted me to have the cardiac catherization, He also seemed surprised at the short time that I was on antibiotics. He is going to send me to see a endocarditis specialist, a cardiac MRI and a stress test.

In the meantime, I worry about recurrence, watch for symptoms, search for any bleeding when I floss and brush and suffer from anxiety a little depression and some PTSD. I see a therapist and take low doses of antidepressant/anxiety medications.

I am a musician. One of my instruments is the harmonica which I have not played since I had endocarditis. Although my doctors and dentists have said it is not a risk to play, they have each suggested different precautions concerning cleanliness and I am still not convinced. Hopefully, I will get back to that instrument some day.

So I live with the feeling that the other shoe will drop and that there’s not much I can do about it beyond taking good care of my teeth and take vitamins to boost my immune system.. I cannot worry about every scratch and nick on my body.. Just hope for the best.