Life with lupus, 2001
Long about mid-January, I had yet another unbearable attack of mind-numbing chest pain--I awoke early one morning screaming in agony. It happened on a Monday morning, and I endured it until my housekeeper, Tina, arrived and kindly gave me a ride to the doctor. Well, the dr. that saw me is getting rather old--I was in horrible pain, yet watched him rummage through his cabinets for something that might be used to lower my blood pressure. Being a southern gal, politeness is part of my genetic make-up, but finally I gasped out a plea to do something about the pain I was in--PLEASE??? He rather off-handedly ordered a shot with some pain meds in it, and gave me a nitro pill to place under my tongue, then began his search through the cabinets for those elusive samples again.
Now I barely remember the ambulance attendants arriving--I have a vague memory of gathering up all my medications in a plastic grocery bag, and nothing of the ride to the hospital. In fact, more than 24 hours are gone from my head. The next thing I knew, I woke up in the hospital, and I was fighting mad. Back in October I spent 14 days in this same hospital--14 wasted days in hell, while the doctors ordered useless tests, scared me with threats of "But you might have another heart attack and if you are at home when it happens you might die", and basically waited for my medicaid to run out. So I was furious to find out they'd tricked me into this hospital again. Here I was in ICU, no phone to call for help, trapped! I got the nurses to bring me the cordless phone from the nurses station and I spoke with my mom. She agreed with my declaration that I WOULD NOT stay here--we'd both been wanting a referral from day one to see a heart specialist. All these endless useless tests were just a waste of time to me--I felt that if they thought I had medical problems they weren't able to treat they should be willing to refer me to someone that could.
Well, I had a pain shot ordered, and that was the only thing standing between me and unbearable pain, so I stayed pretty drugged up. I was able to come to my senses enough that when the younger doctor came in on my second day there, I was able to stand firm upon my rights. I told her how unhappy I was with being placed in this hospital, and that I felt like I needed to see a cardiologist. I told her there was absolutely no way I would remain there another night--that I was going home if they wouldn't send me along to UAB! I meant it, too. I had seen my clothes folded up on the window sill and was completely ready to dress and walk home with or without a discharge if I couldn't get ahold of my mom to come and pick me up.
It wasn't a pleasant interview--this doctor was bound and determined to keep me there--but I was even more determined the other way--secure in the knowledge that I had a legal right to demand a referral and transfer to another doctor. I hated to do it, but I had to tell her that I had no confidence in her boss--that my GP was very old, and was no longer, in my opinion, a qualified doctor--particularly when it came to something as serious as my heart problems. I will always be grateful to the him for an almost instantaneous diagnosis of my lupus back in 1978--a rather remarkable thing in that day and time--but I feel that the man's intelligence and skill is now lacking as time has eroded his mind. I saw ample evidence of this back in the October hospitalization--he would make a statement one minute, then later in the same conversation have absolutely no memory of it. Besides all this, he does not do angiograms, and had already promised to send me to the doctor that did his, yet this also slipped his mind when I reminded him of it. I should gave searched out a cardiologist on my own time; but, like I said, it takes a lot to get me to a doctor, and I am quite a procrastinator.
Anyways, after that horrible discussion with this doctor, she finally agreed to send me to UAB, and made arrangements for me to be transferred that night by ambulance.
Now that was an adventure--one I'd like never to repeat. The table I rode on was hard metal, and I had to lie there with my head elevated into a sitting position, since lying flat brought on the chest pains again. By the time I arrived at UAB 2 hours later, my poor butt was aching from the hard table, the pain meds had worn off, and the chest pains were starting again. Even then, I was feeling relief--such a vast and immeasurable relief that I was finally among competent doctors, and might finally be able to say good-bye to the horrible chest pains that had been so much a burden for the last year or so.
As soon as I got there, I was placed in MICU, where they [ut all the heart patients. I was still feeling pretty convinced that the heart wasn't responsible for my chest pains--I even now think that the heart had nothing to do with my horrible attacks--esophageal spasms can almost perfectly mimic a heart attack. But still, in the back of my mind, I was afraid for the old ticker, and anxious for the angiogram to prove it one way or another. In an angiogram, a needle and then tubing is inserted into the femoral artery right in the crease of the thigh. This tubing is then run up into the heart, where a dye can be released to run through all the little veins and arteries in the heart. This allows a machine to take detailed pictures of the heart as the dark colored dye flows through it, and lets the doctors see the blockages very clearly--click here for some pictures they gave me of my own procedure, for three before and after images of the work they did on my heart.
All this was explained in some detail to me the night I arrived--the test was slated for the very next morning. I was given form after form to sign--horribly terrifying pieces of paper that had me quivering in fear--things that warned of possible complications like loss of life or limb--things that gave the doctors permission to conduct any further measures they deemed necessary based upon what the tests revealed. While the loss of life or limb was pretty bad, the thing my mind had focused upon was a fear that they would discover a need for open-heart surgery and perform it with no further discussion, and I would wake up with a gaping hole in my chest. As I said earlier concerning my last surgery, I don't heal well, and major surgery terrifies me--I feel reasonably certain that I could never survive surgery as involved as that, and I don't want to find out!
I didn't sleep that much, and was pretty close to hysterics by the time they came for me the next morning. One kindly person finally thought to ask me why I was so scared, and I told them how afraid I was that I would wake up and find that they had had to do major surgery on me. They sort of laughed at that, and assured me that that's not what that piece of paper meant--that the doctors would never do such major surgery without discussing it further with me. I was very relieved, but still pretty anxious about the whole affair. Up until this part of my life, my health problems have been manageable. I hadmy ups and downs, and lots of pain, certainly; but I could generally just up my prednisone and keep going for as long as necessary--do whatever I needed to do until I reached a point where it was convenient for me to slow down and recover. My lupus responds very well to the prednisone, so I could almost always postpone a flare until I had time for it.
Heart problems are different, though. Never have I faced a health concern that could literally drop me dead in the blink of an eye. I really don't know how to deal with this, and have, even now, not come to grips with this new chapter in my life.