Hello All,

I can’t believe its been 3 months since I wrote an update on the blog. A lot has happened these past few months: good and bad.

Where to begin? right where we left off, I guess. Last time I posted I had requested my records to be sent to Johns Hopkins. Well, we (mom and I) took the bull by the horns and drove up to Johns Hopkin’s ER in the middle of the night (like 2am). It was one way to get in the door…

My pain management doctor wanted to try a new medication to manage my chronic pain. I took the medication one evening, jumped in the shower, and started having difficulty breathing and chest pain; the kind where you call call EMS, because something isn’t right. I was taken to a local hospital, where the ER doctor dismissed it as anxiety over taking a new medication and sent me on my way (side note: when I spoke to the pain management doctor about the symptoms, it was due to them putting me on too high a dose..so it wasn’t anxiety). We got home around midnight and I tried to fall asleep, only things got worse.

At 2am, Mom and I looked at each other and said lets just go to hopkins. So that we did. Once my history was reported to the doctor, it was a quick decision for them to admit me for further testing. We ended up spending a week there getting a Pet Scan of the heart, CT scan of the heart and another Cardiac Cath. It gave Hopkins and my other doctors good imaging and an update on my heart. The cardiologist there diagnosed me with microvascular disease (little vessel disease) and cardiac vasospasm. Turns out one of the medications I have been on since my heart attack, made vasospasms worse, so I was taken off that medication and we saw that my chest pain subsided. Praise God!

While going off that medication was good for chest pain, it was bad for my heart rate. It was being used to control it, and going off of it, my body went through withdrawal and they have been trying ever since to get my heart rate under control. Having been at Hopkins the hospital cardiologist I was seen by, wanted to put me in touch with the head of inpatient cardiology and a lipids expert. We have established with him and he aggressively changed my meds to control my cholesterol. We see him again next month, so later this month I will repeat my lipid panel blood work. He is candid and straight forward and he was very frank about my diagnosis and prognosis. Some of it was hard to hear, but his treatment plan is what he and  other cardiologists who reviewed my case think is best, so for now we follow his lead.

So the short of it, my chest pain has been controlled by taking me off of one medication, adding another one to control the vasospasms. I am having more imaging done of my heart by my local cardiologist and they are working in tandem with Johns Hopkins, seeing me monthly between visits back at Hopkins.

We’ve had a few scares and a few overnight ER and observation nights in the hospital as they have been trying to manage my medications and keep things in order (i.e. keep my blood pressure and heart rate in a safe zone). But, otherwise I have actually been feeling pretty good lately. Mom and I are pretty grateful for that.

This journey has been exhausting.  When you have a heart attack or open heart surgery, you have to work through in your mind that your heart and body failed you. You slowly pick up the pieces of your heart and put them back together again, slowly healing the emotional alongside the physical. You wait for the other shoe to drop, but when it doesn’t you learn to live in the present. You learn to come out of crisis mode. You learn to try to live again. You learn to trust your heart again.

Thanks for the continued prayers. Please keep them coming. 🙂