Business Casual

I took today off because I had some business that I had to attend to. I thought that it'd take all day, but really it only took the morning. I was rather pleased with that since I then had the rest of the day off to surf and relax. But then I got a call from my doctor, my test results are in. I'm hypokalemic again. He wants me to take more of the medicine. I wish he'd try to find out what's causing the symptom rather than just treating it. I could change doctors, but I'm told that if anyone would be able to figure this thing out it would be him.

Blow Off

If it were your awards banquet and you'd worked hard all year, you'd want your family there. If your family said they'd be there, then they should be. They shouldn't arrange other things for that evening, even if they did decide to invite you (knowing that you couldn't come). And if they were insensitive enough to blow you off, the explanation should come before, not after the invitation. "Come over the next day for lunch" isn't making up for it. No thanks. We know when we are being blown off.

A Room of Life

The reunion was wonderful, and I will post about that soon, but I was invited by the host's mother to her house on Sunday for a brunch for people who'd attended the Youth Ranch that was hosted at her house. It was a lovely gesture, and a wonderful time. Walking up the drive to her home brought back so many memories and the room we used as the "Ranch Room" was almost untouched by time. For many of us Ranch was a life line through a very troubled teenage. There were about 20 of us in the room when someone said "I know where I was when I trusted Christ. I was sitting right there!" And then another and another pointed to the spot they were in. I looked around and realized that I was standing on the spot I'd been sitting when I trusted Christ. A chill went through me when I realized it. But the more profound thing was the realization that so many people had come to know the Lord in that room. For us it was a room of Life, a room where God spoke into our hearts. It was amazing.

Ranch Reunion

I'm going to a reunion of North Atlanta Youth Ranch tonight. Youth Ranch was a bible study that I attended as a teenager and was the primary focus of my social experience at that that time. To this day I maintain a relationship with several of my Ranch friends and miss many of those that I have lost touch with over the years. I am really looking forward to tonight. I will be going there with my life long friend De, and her husband Bob. De is embarrassed to go because over the last 35 years she has amassed a bit of weight. I assure her that most of us have, but that does not make her feel any better about herself. Maybe what she doesn't understand is that we are going because we want to be reunited with people whom we shared a bond with may years ago, not to judge each other for the toll those years have taken. I have put on many pounds, and have not been very successful in my life, but I do have a love for the people whom I'm going to see tonight. If they walk out shaking their heads because De and I have put on weight, or because I haven't been able to gain fame and pelf, then it is they who walk away with nothing from the evening.

All in a days work / from the patient's point of view

I was reading "Change of Shift" http://nurse-ratcheds.blogspot.com/2008/04/change-of-shift-with-nurse-chapel.html (thanks Kim and Nurse Ratched), and was stuck by a post from Mike Pringle at Healthcare Today  called "All in a Days Work" http://www.healthcaretwoday.com/2008/03/all-in-days-work.html.  It's a good post and really worth reading.  It will make you more greatful if you ever are misfortunate enough to find yourself on the wrong side of the Johnny.  But my perspective is a bit skewed in light of my recent hospital debacle.  I have no doubt that the doctors who were treating me were well intentioned and trying to get me well.  I do not in any way think they were being intentionally negligent or even intentionally arrogant.  But the outcome was that because of their arrogance, they didn't review my medical history from that same group or that same hospital and they didn't call for a cardiac consult, even though my case was clearly a cardiac case.  And, most importantly, they didn't call for a consult with my cardiologist, mainly because his group had recently left that hospital to join with another hospital's nationally acclaimed cardiac program.  He was on call that weekend.  An ER doc and a couple of young Internist looked at one 12 lead EKG that was taken while I was on beta blockers and had an extremely low heart rate and blood pressure and decided that they knew better than their own assistant medical director and two electrophysiologist who had seen me in the past. 

But the deal is that I share as much blame in this situation as they do. 

I know that sounds odd, but it's true.  You see, I try very hard to be pleasant and helpful while I'm being treated. I know that I go into any medical situation with a life threatening condition and a five page list of contraindicated medications that tie the hands of whomever has the misfortune of picking up my case.  Not only that, but I also have to tell them they can't use my left arm for pressures or sticks because I have a disfiguring condition caused by my cancer treatments.  My cosmetic surgeon says that I'm a pain to treat, and  he's right, and there is absolutely nothing that I can do to change it.  So when I have to submit myself to medical people, I really do go out of my way to not be any more of a difficult patient than I already am.  Sometimes, like a few weeks ago, it bites me back. 

When I was taken to the hospital on March 28, from the very beginning things started to go wrong with me and I should have given up  the people pleaser persona long enough to challenge the situation.  The first thing that went wrong was that I have a right to ask that the ambulance take me to the hospital of my choice.  It was rush hour, and the EMT's were concerned about my heart rate.  I don't blame them for wanting to take me to the closest hospital.  But I knew that the cardiology group from that hospital had moved on, and I knew that my cardiologist was at the hospital that I requested.  I should have been less concerned that an irrate EMT may try to get even with me by using the largest needle at his disposal to dig around in my tiny scarred up veins (My son's an EMT.  I know that it happens), and more concerned that I get to the right hospital.  

Lesson #1, I need to be more assertive about where I'm taken, especially when I know I'm right. 

When I got to the hospital, the very nice and efficient nurse who was there was practically whispering.  She was concerned about HIPPA and about my privacy.  She may have also been concerned about the obnoxious man curtained off in the next bed who was obviously jealous of the attention that I was receiveing.  Regardless, I had a right to be spoken to in a manor that I could hear.  I shouldn't have been embarrased about my 50 year old hearing or conserned with the reaction of the man in the next bed. 

Lesson #2, I should have been more assertive about my communication needs.

When the ER doctor came in and announced "you have quite a history here!"  I had an opportunity to accertain that he'd at least read enough into the chart to know to call my cardiologist.  I should have used it.  But he is an intelligent professional and I didn't want to be rude and demanding.  "let him do his job"…I could have followed up without being rude, but I didn't.  I didn't want to be difficult.  As a result he decided that I didn't need a cardiologist consult and handed me off to two (from what I now understand to be junior) internist.  It would have been a good time to ask for that cardiology consult.  I didn't.

Lesson #3, In cardiac situations I need a cardiologist, preferrably my cardiologist.  I need to be more assertive about my needs for specialists.

It was obvious from the very beginning that the two junior hospitalist hadn't read my records and didn't know what LQTS was.  I should have asked for a cardiology consult.  When one of them told me that it was unfortunate that my cardiologist was no longer associated with the hospital and that she couldn't call him, I should have asked to be transferred to the hospital that he was at.  I should have challenged their lack of experience in recognizing my condition and challenged their care since what I had was clearly a cardiac problem.  I didn't.  I didn't want to be difficult.

Lesson #4, I need to be more assertive and challenge the doctor when they are obviously wrong.

If you are seeing a pattern here it is that I need to be more assertive. I need to stop worrying about being difficult.  I can be difficult without being rude and demanding.  And it is obvious to me that I need to do it for my own good. 

As a result of not wanting to be difficult, or rude; of wanting to give the doctors a break because they are caring dedicated people in a difficult job, I don't have a decent diagnosis from my hospitalization or a real good idea of what happened.  If I'd just spoken up and said, I'm obviously at the wrong place, I need a cardiologist capable of reading that EKG and refiguring the QT interval, I may have gotten a valuable response. 

Doctors may be dealing with rude, abusive, manipulative and or drunk people, but from what I was seeing they were dealing with a lot of very scared people.  Fear has a way of brining out the worst in people, even in the seeker who is afraid of running out before the pain ends.  The man in the bed beside me in the ER who was jealous of the care that I was receiving was in fear of his own illness and that because I was sicker, he may not get help.  The drunks down the hall who were yelling at the nurses were just as afraid.  Me, I was afraid that if I stood up and asked for the things that I needed, if I asserted myself, I may anger people and they wouldn't want to care for me.  As a result, I didn't really get the care I needed.

Survivor Day!

Four years ago I was in a radiology suite and a doctor was telling me that I had several large masses in my left breast.  He was 90% certain that they were cancerous.  He knew that it had already spread into my axillary lymph nodes and was certain that it had also spread into other parts of my body.  He sent me to the surgeon across the street.  She did biopsies right then…about 20 of them.  I was supposed to wait 5 days to get the results but the next day they called me to come into the office.  I had breast cancer. 

Today is a hard day for me. 
My daughter didn't want to get up, and yelled at me.  I yelled back.
There was no good music on the radio coming to work.
My phone was ringing when I got to my cube about an issue that I didn't want to have to deal with.  It's not my job and I can't really tell you why it's on my desk.

My manager assumed that because I didn't answer her call on the first ring (I was on the phone with the above caller) that I was late.

Stupid manager at work asked stupid questions about busy work that he stupidly initiated and pissed me off in the process.

I had an appointment during lunch.  I did not get to eat.
Another manager just usurped the filing cabinet that I had moved in for my use.
My daughter called to tell me she needed to go on another shopping trip for her 3 day trip to Florida (we have already spent $200 on supplies for this $150 field trip)

I have an afterwork appointment with a new doctor.

I survived for 4 years!  I should be allowed to eat Twinkies and Soda Pop!  Instead, I want to go cry.

Grevious Harm

I guess it wasn't really grevious harm, but it almost was.  I just can't seem to let go of the errors that were made at the last hospital visit.  My cardiologist and my nephrologist assured me that they would be handling the situation.  But I'm not sure what they mean by handling it. And with a nephrologist, two oncologist and a surgeon who admit to that hospital, the likelihood that I'd find myself back there someday is better than average.  So I just couldn't let it go.  I wanted to make sure that the record clearly states that Dr's Z and J were not only out of line, they were blatantly wrong in their denial of my diagnosis of LQTS.  So I called the hospitalists office and was told that I'd need to speak with Dr. M.  Fine.  On a previous  admission to that hospital, Dr. M. wrote the discharge summary that included the diagnosis of LQTS.  So I talked to Dr. M.  He yelled at me!  I was trying to be calm and reasonable, but he yelled at me and tried to make it seem as if the record showed that Dr's C and J were aware and concerned about the possibility of LQTS.  Finally I had enough and yelled back that not only were they not concerned about it, they blatantly denied the diagnosis. They told me point blank that I didn't have it, took me off my beta blockers, gave me medications on the Arizona CERTS list and then perscribed another for a mild infection as they were sending me out the door.  They even told me that beta blocker weren't appropriate for LQTS.  He assured me that he will talk to the Dr.'s and that the record will show conclusively that I do have a clear diagnosis of LQTS from three leading cardiac electrophysiologist.

Still, it bugs me.  On one hand I'm told that I have this condition that could make me just drop dead for very little reason.  On the other, the only people who should be aware of it would rather ignore the diagnosis because it's inconvenient for them, and who cares what the consequences are.  Honestly, I would have fared better if I'd gone in there and said "I have chronic fatigue syndrome, but the kumbucha tea and the the Juice Plus vitamins I've been using are making me feel much better".  If chronic fatigue syndrome is real, nobody dies from it and the doctors probably would care less what I'd take for it.  But LQTS is real; people die from it, and beta blockers are the only non surgical therapy for it and the recommended first line therapy.  Avoiding the medications on the list is very important.  And yet the doctors act as if  I'm just playing at making their lives difficult.

It just burns my toast! 

Evil Heart

I decided last week that over last weekend I would need to put my dog down. This was a long and hard decision for me, but the truth about it is that he's a wonderful dog, but life has just gotten too difficult for him. He can barely walk now and I think he may be in pain a good deal of the time. But that didn't happen because my heart decided that last weekend would be a good time to put me down. I ended up being taken from my job to the emergency room on Friday afternoon. The biggest problem with Friday afternoon was Atlanta Rush Hour. The ambulance driver, though they are obligated to do so, refused to take me to the hospital where my cardiologist was and instead took me to the closest hospital available. This hospital is not to happy with my cardiologist right now because his group just left them high and dry for a more prestigeous gig at the hospital I'd requested. The outcome was that they refused to even consult with him (I found out that he was on call all weekend) and decided that I didn't have the congenital heart defect that leads to a life threatining arrythmia. They ignored my list and gave me several medications that would actually prolong my already prolonged QT interval. Then they took me off the beta blockers that would protect my heart from the arrythmia (torsades du pointes), and then hyperhydrated me without considering my kidney problems (also caused by the same potassium ion channel deformities as my heart condition). That being said, they really weren't trying to kill me, just get my heart rate back up to a normal range. The real problem with them is that they wouldn't swallow their pride and act like professionals. A single phone call to my cardiologist would have confirmed the diagnosis that the ekg wouldn't because my heart rate was too slow to be read on the ekg properly. As a result of all this I have been out of work all week going to my cardiologist and my nephrologist and my primary care doctor to get a more realistic plan that did include treating my heart and kidney conditions while maintaining a normal if somewhat bradycardic heart rate. They have been explaining to me that torsades du pointes isn't the only problem for LQTS patients. Neurocardiogenic shock syndrome is a problem too and it can put a strain on my already strained kidneys. So, if my heart can't arrange to die on it's own power, it will just drop it's rate and kill off the kidneys...Evil Heart! As for my dog...he's been given a week's reprieve and now that I've been having problems, he's being very clingy. It reminds me that he loves and trusts me...and I'm going to be putting him down. Guilty conscience's stink.

On assuming the Ostrich Position

I am a people pleaser. I hate it, but I think I now must admit that it's true. I want other people to be happy with me and sometimes that isn't always to my advantage. That being said, the characteristic causes me to go out of my way to be the "good patient". More often because of my low tolerance level for procedural silliness I end up with the tag of "difficult patient". The other thing that gives me the tag of being a difficult patient is the 5 page list of medications that are ill advised to be taken by people with Congenital Long QT Syndrome. It makes treating the most minor and common things like colds and ear infections a real pain for my doctors. I have never found any of them save my cardiologist that appreciates the list. I can understand it. Who wants their hands to be tied while they do their job. But what I can't understand is the doctor who decides the best way to deal with the list is to try to convince me that I don't have the syndrome. The syndrome increases the probability that the medications will have a lethal affect on my heart. It's not a risk that I want to take lightly. I notice that these same doctors never try to convince me that maybe I didn't have Breast Cancer.