I didn’t know what I was going to do, but knew I had to find a new doctor and fairly quickly.
I had heard about a heart fair at a local hospital the first Saturday in February, so about 10 days later. It was a free event, so decided I had better go check it out. During the interim, I began researching cardiologist through my insurances’ website. I would read through the minimal bios, and I found about 5 I wanted to research further. I spoke to the referral nurse at the office I was working, to get her opinion. She hadn’t heard of any of them before. So, to the computer I went once more.
After a little bit more searching, I zeroed in on one doctor. He listed his specialty as an Electrophysiologist (the “electrical” heart doc). Plus, he listed research and genetics as a subspecialty.
Hmmmm, sounding promising! So, I made an appointment. I couldn’t be seen until the end of May, but at least I had an appointment!
The day of the fair dawned cold and clear. I drove to the hospital, about 20 minutes from my house, and was surprised at how full the parking lot was already! It was a packed house!
I finally worked my way to the entrance, and started asking who I should speak with about HCM….
Two hours later (quite literally!), I finally found a nurse that had actually heard of the disease (nobody else had even heard of it before!), and directed me to go to the heart failure clinic at the other end of the hospital and downstairs.
It took me a while to traverse the hallways and the horde of people, but I finally got down to where I needed to be, and found blessed silence. There was me and one Nurse Practitioner down there. She asked if she could help me with anything, and I told her I was directed down here to see if this is where I needed to be. I was able to explain my history and story. She listened and then told me I was in the right spot!!
I told her I had an appointment with an EP in a couple of months. She told me yes, to keep that appointment, and that the doctor I had scheduled with was also part of the HCM team. But, I should really call this number (she handed me a business card with the clinics number circled) on Monday and tell them I needed to schedule an appointment with the HCM clinic.
Talk about relief! I wanted to cry right then and there! You mean, not only have you heard about this disease, but you have a clinic devoted to HCM patients?!
You bet that number was the first call I made Monday morning, and I got an appointment for 2 weeks later. I was excited and nervous at the same time. The next couple of weeks crawled and flew by.
My appointment day finally arrived. I did not know what to expect. I had already arranged with work to go in later that day, after the appointment, so I was dressed in my scrubs. I got down to the sign in desk, and was checked in with little fuss, as all of my medical records had already been sent over.
I was called back to the room by one of the medical assistants and vitals checked. She told me the pharmacist would be in shortly. Pharmacist? Really? And a few minutes later, he walks in. He goes over my complete medication list and asks me questions pertaining to their dosage and usage. About 10 minutes after the pharmacist leaves, in comes a Nurse Practitioner…..Jeff (he would become one of my favorite!).
Jeff spent a very long time with me…at least an hour. We went over my medical history, my family history, my medication, and we spoke about how I was feeling. Did anything cause my symptoms to worsen or to get better? Then he did a very thorough exam. He told me he was going to go out and speak with the doctor and that they would be back in a little bit.
This next part, lasted about 20 minutes. Then Jeff and a doctor walked in. The doctor told me I could call him Rami (as his name was just waaay too long and hard to pronounce!)
We covered a lot of the same ground, just not to the extent that Jeff and I had. Another quick listen and look. And then we sat down to discuss the upcoming plan of action.
What? You mean I actually have a say? How novel!
I left the clinic that morning very excited and happy! Not only did I appreciate the “team” approach, but to actually have medical personnel that understood my disease. Most importantly to me, they LISTENED to what I had to say, and appreciated my input into my care! I didn’t know what the future was going to hold for me at that moment, but I honestly didn’t care….because I had found a group that wanted to help me.
I was to learn a bit later, that I had stumbled on an HCMA approved Center of Excellence for HCM. What a HUGE difference in approach and care!
I made a follow up appointment for 2 weeks later, and so began the next leg of this journey…..