Marjie's introduction

Hi all, this is my long and twisted story so far.

Historically my doctors thought I might have Systemic Lupus Erythematosus (SLE), then they said no maybe it's Rheumatoid Arthritis (RA, then they changed my diagnosis again and said it's Mixed Connective Tissue Disease. My main symptom was pericarditis with effusion causing a murmer and EKG changes. That was over 25 years ago, when I was often pregnant and having children. Then I was on Plaquenil for several years and stopped having children. All my symptoms disappeared, I stopped the medicine and my rheumatologist dismissed me from having to be seen for whatever it was. Over the years I was diagnosed with hearing loss, Hashimoto's Thyroiditis, dry eyes and dry mouth, diabetes, high blood pressure and high cholesterol. I've had several non-cancerous tumors removed (from finger, breast, parathyroid gland), my gallbladder (no stones) and a malignant melanoma (familial dysplastic nevi.) I've had lots of CT scans, MRIs and other diagnostic procedures, and repeated abnormal labs (including elevated liver enzymes, RDW, platelets and low hemoglobin and hematocrit.)

I had a heart attack around December of 2007, misdiagnosed in the ER twice as a sore throat (I had pain in my neck and jaw.) This was found a few weeks later when I had pericarditis once again and an abnormal EKG showing permanent heart damage. Now I have hit my 50s and menopause. October of 2012 I had chest pain and difficulty breathing, diagnosed as probably heart related, possibly unstable angina. While on preventative nitrates I was still having chest pain, so my cardiologist and I decided we'd do a catheterization because I have diabetes even though my stress test and echocardiogram showed no major problems (evidence of the prior heart attack, but no major plaque build ups, valves slightly leaky but no major regurgitation.) Actually not too bad for an overweight old woman with so many medical issues.

Feb 2013 I had the scheduled cardiac cath through my right groin artery and results were better than expected which puzzled my cardiologist. I started running a fever but did not appear to have an infection. Then my thigh started swelling and hurting one evening so my cardiologist sent me to the ER with orders for Doppler ultrasound of artery and both veins in my right leg. Clots were identified in both major leg veins with one yielding poor blood flow to my foot. I was admitted to the hospital's telemetry unit and put on bed rest and injected with Lovenox, regular Tylenol was fine for the pain. Hematologist and interventional cardiologist were called in to discuss with my primary and cardiologist. Tons of blood tests were run and a CT scan from chest to pelvis looking for melanoma mets (none found.) Apparently in one vein the clot went from below my knee up to my pelvis in the shared vein there, seen on CT. They decided to do a thrombectomy through the back of my right knee using a catheter. I was in the cath lab about 2 hours in the morning. I am not sure what kind of instrumentation was used, but it vibrated a lot (I could feel that - no pain or discomfort just weird sensation) and they said it had a vacuum action. Blood flow was restored to my foot. My insurance covered the Xarelto they prescribed so I was sent home that evening.

The swelling in my thigh went down but the swelling in my calf, ankle and foot increased over the next 2 days. I got a hot, red area on my calf. Incredible pain came and I could not put weight on my leg (along with an egg shaped knot of swelling from the incision in the back of my knee.) Another trip to the ER gave me narcotic pain meds, which weren't enough. I had to sit, elevate my leg, use a heating pad AND take the narcotics to get enough relief. After 4 more days I could walk again. Two weeks afterward I only needed pain pills to sleep, swelling was down, I could feel my toes again, my leg only hurt if I bumped it, slight pain in foot. Have seen the hematologist, tested for inherited clotting disorders - all negative. Of acquired disorders my Lupus Anticoagulant comes back high, but tests are still considered "inconclusive" for now. My Xarelto dose is being increased from 15mg to 20mg in another week.

Now that I can drive again, I plan to go to the hospital and get a copy of my records as I'm sure I don't know enough about what happened to me based on my insurance diagnostic codes that say much more than the doctors told me. I still don't have enough answers, but I am pretty sure I'll be on blood thinners for a long time. That has its own set of issues - cry and your nose bleeds, brush your teeth and your gums bleed, etc. I've cried - a lot, from pain, exhaustion, disappointment, fear of the unknown, fear of complications, feeling of abandonment when my significant other, whom I've lived with for 5 years, left town because HE was overwhelmed by it all. My ANA, SLE/RA tests are still negative, but my Erythrocyte Sedimentation Rate (ESR/Sed rate) remains high, so we know I have some sort of inflammation going on and some sort of autoimmune issues, but not what they are.

My cardiologist thinks my chest pain in October was a tiny Pulmonary Embolism (PE), that the clots in my leg veins were there prior to my cardiac cath. and only discovered because they grew larger while I was off my feet, that I am incredibly lucky I didn't have a major PE or stroke and am lucky to be alive. I don't feel lucky at all, I'm really bummed out about having DVT.

Update: I found out that they did do a D-dimer test in October, but it came back negative. My cardiologist thinks it was a false negative result. Along with my chest pain at that time, I also had difficulty breathing. More research for me because the nitroglycerine patch gave me relief - so I'm wondering would that help a PE? My CPK tests were all negative too (and they were repeated every 6 hours.)