I have Lupus. I was genetically predisposed to this devastating autoimmune disease because of my mom and her mom having RA and other related autoimmune disorders, such as Sjogren's Syndrome (severe in my case) and Raynaud's Syndrome (mild in my case). Both her brothers had Celiac disease (autoimmune), and one died of pancreatic cancer as a result of the disease; the other learning of the same disease at an earlier age, therefore living without gluten for many years. It's quite common for a traumatic event to trigger the disease lying dormant in my body because of my predisposition.
When my oldest daughter was killed by a drunk driver, and I saw the whole ugly scene, helpless to stop it. Within the year after her death, I noticed strange and painful symptoms. I was immediately diagnosed with Lupus Erythematosus. I was also being treated for PTSD after witnessing the violent death of Tiffany, so the secondary physical pain and other symptoms took a back seat till it was found that my chest pain was caused by inflammation of the outer sack that holds the heart, called pericarditis. The Lupus has been working insidiously on my heart all those years since my diagnosis, 33 years ago. It has affected my lungs also, and so much more. I've had pleural effusions (quite painful), and have taken prednisone in higher and lower doses for more years than I kept track of. It caused my appetite to become voracious, and I gained 100 pounds, but it also made me feel better and helped the pain and symptoms. I have been very fortunate from having taken so much of the poison prednisone, which, among other problems, can thin your bone density, .causing your bones to appear as Swiss cheese on x-rays. My bones are in excellent condition, though I have broken many because of frequent falls due to unbalanced blood electrolytes and blood pressure that dropped out and caused me to pass out. I also take anti-seizure medication, not to prevent grand mal seizures, but to prevent not-run-of-the-mill seizures. All these bizarre things happen to me because of Lupus. I've been hospitalized so many times, I've lost count. I've worn the holster heart monitors so much that they put in an embeddable monitor. We already knew that I had A-fib and that my heart was structurally sound by many echocardiograms, and I had had a Watchman surgically put into place over the left atrial appendage to prevent any clots from gathering there to have one to shoot out and cause a stroke. The embeddable monitor was put in on June 17 this year. I questioned the value of it, but what do I know?
On June 18, Father's Day (the very next day), I had all but given up. I was dying, and I knew it. Somehow, and I don't remember any of it, I had ended up in St. John's Prairie Heart Institute, but it was a 2nd home for me by then. That morning, I'm told that I passed out, so Dick called and had an ambulance (on speed dial) come and take me to the local ER. They really didn't want me again, as no cardiac doc was there, so the city paramedics toted me off to Springfield. I have absolutely no memory of any of it, which told me the condition was getting worse.
I had come back to fully conscious when a completely different doc, young, cute, and very sweet-looking, new to me, came into my room and made a sad face at me. "Please don't be so sad. I've thoroughly read all your history, and I believe I can help you. It won't be perfect, but nothing is. I want to put in a pacemaker right away - the sooner, the better. Your ventricle is mirroring your A-fib, and you're in V-fib, which is quite dangerous. I'll do an ablation between the left atria and ventricle so that the ventricle won't receive the signal from the atria to beat fast and inefficiently. I will first take out the embeddable monitor, which is useless. We already knew what your heart was doing. It's time to get that stopped." I told him I was sold (Dick was on his way but not there yet), and what did I have to lose? This wonderful young man had me in the OR within an hour, and he saved my waning life. I haven't yet seen him since, but I will eventually see him to tell him what a miracle man he is. In the meantime, my heart readings are going to him all the time. He recently dropped my pulse rate 20 bpm, from 80 to 60. There's something about an ablation calling for a faster heart beat for the first few months. I go back in January, and I hope he will be there so I can hug him and express my gratitude.
I have already accepted that I will probably not live as long as I'd like to, but in the meantime, it's the quality of my life that has improved 100%. I didn't actually expect that. I never even have the FEELING of impending fainting. I can now walk through a store, and actually get to the check-out without looking for somewhere to sit and put my head down between my legs. That had even become not enough to keep me on my feet. It was beyond control, and I was feeling sick all the time. The only good thing was my weight loss, and that kind of sickening, impending doom brought me to a weight lower than that of what it was in high school.
I can't wait to see Dr. Scherschel again and ask him about his kids again. He's a wonderful family man, and that fact, plus him telling me he could help me, just sealed the deal. My instinct was correct in my opinion of the embeddable heart monitor and my confidence in putting my life in his hands were what did it for me.
