They Said What!

The Infectious Disease Doctor is where they send you when they don’t know what else to do. When they have given up and really don’t feel like thinking outside the box of their fifteen minute appointment schedule. I have been sent to many ID doctors over the years due to my chronic kidney and urinary tract infections which have plagued me since I was a child. My favorite experience was the one who listened to a few seconds of my medical history spiel, turned his chair to me and said “You’re screwed so get used to it.”

But, this appalling behavior is not limited to certain doctors. No, take the time a new OBGYN told me that I should just cut off both of my breasts because I was going to get cancer from my transplant medicine anyway, so why not. Or, the time several years ago I made an appointment at a prestigious hospital where I went many times in high school. I was excited to go because I had an appointment with a doctor who used to see me and had hope he could help with the infections. After sitting in the sterile cold room staring at the brochures from a variety of pharmaceutical companies, he came in… and eleven minutes later he was gone.  But, not before handing me one of those meaningless brochures and patting me on the shoulder with a bored look on his face as he sauntered out.

The emergency room is always a horrible experience and it takes a lot for me to go...a lot. It’s not bad because of the waiting, God knows I am used to waiting, but because I know that once I finally am seen I will have to explain my medical background and try to explain as simply as possible while I am there to someone who is too busy to really be able to care. It never fails that by the time the doctor comes in I am greeted with the same blank look and forced to tell my tale again, or at least try to. Being in a rush and seeing that I have multiple issues I am often not listened to, or just taken the wrong way. My favorite was when I first started having crazy heart palpitations and severe blood pressure changes. I was an hour away from home and felt like I was having a stroke and decided to drive back to the emergency room. On the way there, going about 90, the symptoms became much worse due to the panic I was feeling, and I am not easily sent into panic mode. Once inside I was put in a cardiac room and attached to wires and given injections to bring the pressure down. After lying in the bed for a little while and relaxing, a gentleman came to my bedside to do something with my IV. To my surprise he turned to me and said “You should really see someone about your problem, it’s not healthy to not eat.” What!? Somehow in his little brain he decided that I must have some sort of eating disorder, which to this day I am totally baffled about. One because I love, love, love to eat, but mostly because he was so smug in the way that he said it. It turned out that my electrolytes were extremely out of whack, most likely due to the onset of pre-menopause and then undiagnosed Adrenal Insufficiency, along with the side effect of a new medication. But, when he had seen the results he had jumped to his own conclusions.

And, of course, there is the newer experience of having doctors actually get upset at me because I show up at their office or ER and tell me I am “too complicated.” This began a year or so ago, but recently it has become the normal reaction. A month ago I began to have what seemed like the beginning of a serious sinus infection again, but with bad inflammation all over my body, as well as other issues. My face began to feel numb and my fingers were tingling. I was having pains in my groin and it felt like I could have another UTI. It was not too long after my yearly kidney MRI and that usually makes me feel crappy for a day or two, but could tell it was not that. After a few days of observing what was going on and struggling I finally went to a local Urgent Care. Not before researching the place and seeing that it noted they could do labwork and give IV antibiotics because I know not to even bother going into one of these places normally. I was thrilled that I had found a place I could go to.

After a long day at work I went in, paid my co-pay, and was put in a room. A few moments later the doctor came in and I quickly explained to him what was going on and that I just needed to check my electrolytes and maybe get some fluids. He became visibly upset and said they did not have anything there to deal with someone like me and what was I doing there anyway because I was too complicated. A few moments later I was driving to the ER without anything being done at all.

At the ER I was put in a room and greeted by a young but nice PA who listened to my story, but was obviously too busy to take the time to really hear me and take the time to help. Nothing new. She managed to order some blood work and a urinalysis and as I sat I my room waiting I saw her and the others frantically running in and out of different rooms. A few hour later, yep hours, she appeared at my door again and told me my lab work was okay but I had an infection, and probably a sinus infection. She asked me what antibiotics are usually used, a question I am always asked so that they don’t have to look up my history, and proceeded to say that it was late and they were busy so she was ordering an inter-muscular injection of the antibiotic rather than start an IV. This is something that should have happened when I first got there hours before, but that is just my opinion, what do I know. She was also starting me on a high dose of Prednisone, another thing they like to do and the reason I developed Adrenal Insufficiency in the first place!

Knowing my body and feeling hesitant about taking the Prednisone more than I have to, I waited a few days to see how things went. I also had an already scheduled appointment with an Ear, Nose and Throat doctor in the hopes of getting help with the everlasting and debilitating sinus infections. So, off I went, feeling miserable as usual and hoping for answers. Long story short, he proceeded to tell me he didn't believe I have sinus issues but wanted me to get another sinus catscan. He suctioned out all the dry skin living in my left ear canal so that I could stop hearing it rattle around like a tin can inside my head. And, oh yeah, I left with a new diagnosis of TMJ from constant clenching of my mouth and biting of my tongue, which I do a lot these days when I'm awake. Me stressed? Nah...

Later that night as I was about to go to bed and was taking the collar off of the dog, I felt a pressure in my right eye. It continued into immense pain in a few seconds and I went into the bathroom thinking it was another small blood vessel pop. What I saw in the mirror was out of a horror movie and the pain was becoming so intense I felt nauseous. The entire eye was full of blood, the tissue inside the eye was swollen and protruding. My eye looked like it had almost popped out if its socket.

Knowing that eye issues can be serious from all my years in veterinary medicine, I contemplated driving to the ER but the idea seemed bad in the dark with only one eye on the road...literally. Besides, the thought of going  back again so soon was exhausting in itself. So I went to bed and hoped for the best. I would call my eye dr in the morning if I was still alive and the eye was not lying on the floor somewhere. Sometimes you just have to say screw it and I was too tired to care.

It was long night with getting up often to try look in the bathroom mirror at the situation. It doesn't go very well when you try to look at one of your eyes in a mirror when one of your eyes can't focus. Pretty silly.  Arriving at work the next morning I explained to my boss that I had to run out to another doctor appointment and showed him why. Needless to say he was just fine with it. Two hours later I was at the eye doctor, but since nothing is easy in my world, the doctor available did not take my insurance and also encouraged me to go to...the ER. He did spend a few moments talking to me about the eye and told me that I needed to make sure the ER doctor listened to me and not to take any crap from.them. After all they are there to help us. Off I went.

After half an hour waiting in the ER lobby staring through my painful bloody eye at the pouring rain dousing the people coming and going, I was called in and put in a room. I tried to tell the nurse who escorted me in about my situation because she asked, but she quickly told me she was just helping out the other nurses and she could only make a quick note. Ok. She promptly left and another half an hour went by before a doctor came rambling in the door. I knew immediately from the stern sour look on his face that it was going to be another fun visit. He gruffly asked me why I was there and I tried to give the story quickly and to the point because I could tell he was not interested, and not in the mood. I got the words "transplant patient" out of my mouth and that was that. He abruptly told me that they did not deal with transplant patients and I would have to go Boston. Knowing this was ridiculous because I had been to this hospital many times, I told him that my  issues had nothing to do with my transplant and tried to explanation that I was actually sent there and why.  He looked at me and was visibly annoyed. What came next was a lecture which included the words "too complicated" and advice that was not asked for, and without a full understanding of my situation. He did manage to then grace me with a quick shine of his light into my bad eye before swiftly exiting the room leaving me somewhat dumbfounded and more than irritated. So much for being there for us. I have contemplated not paying the $100 bill I will receive for that waste of time, but knowing me I will end up paying it like a sucker.

The stories go onand on...

 It appears that these people in white coats have become so numb to the profession they worked so hard to be a part of that they can no longer really relate to those who are relying on them. They no longer have the time, energy, interest or patience to look someone in the eye, really listen, really care and really do something. Instead they have become victims in their own right of the incredibly screwed up medical world and all its red tape. They have become robots who are programmed to walk and talk, but do not have the ability to think for themselves (well, except the guy above who probably shouldn’t have). This sad reality has been proven to me over and over again in so many ways.

So, what does it feel like to explain to a doctor your medical background, your current symptoms and how badly you feel only to have them turn in their chair and say “But, you look fine." or "You're too complicated,." Well, it is pretty frustrating, and eventually it becomes really depressing. It is even worse than all of the stupid yet innocent comments made by others. Because every doctor I have gone to has basically given up on me, every new one brings a new hope of help, the possibility of a better future, of a future. Each time the conversation ends with nothing but these digs, a little piece of my hope dies.

 And what's worse is that I have been forced to become my own doctor. It’s not my choice, but unless Dr House is really out there, it is the only option I have.