Wednesday, December 1, 2010

Pain & raising heart rate make sleeping tough - Duke docs backing away

This may not be one of my most positive posts.  I have spent two painful, sick, scary, lonely days in Cleveland getting pre-op appointments that could not be done by "my doctors" at Duke.

Physicians at Duke Medical have been my doctors and surgeons of choice since the early 1980s.  Times change.  Medical institutions change.  

When the dust clears, I know that I don't have any physicians at Duke Medical in NC that care about my medical well being.  And that will be a problem because after Cleveland finishes with me, they will ship me back to Duke.  And, as per usual, Duke will ignore, insult and abandon me.  

I never did anything to deserve being treated so mean by doctors at Duke.  Bone infection is painful, makes patients tired, frustrated, ill.  I vomit regularly. I cough, I have severe asthma. I fall. I lose consciousness.  I become confused and feel dizzy.


Duke really started disliking me when I stood up for myself during my cancer surgery and chemotherapy treatment. In mid 2006, I  moved from Chicago back home to NC just to be treated for cancer at Duke.  The day before my cancer surgery, the cancer nurses yelled at me and would not let me have a contralateral breast ultrasound.  I tried to explain the surgeon requested it.  The scoffed at me.  They asked me to leave.

I actually heard the nurses talk ugly about me and mocking me in the hallway.  My dad was with me and tried to comfort me as I cried.  I was only doing what the surgeon wanted.

The next day I was scared to have the cancer surgery because I felt like just a number.  I was so scared and in tears.  The surgeon took the time to speak with me and offered to put off the surgery.   He was a great surgeon but the tone was set.  As my Duke oncologist Dr. Gretchen Kimmick told me:
Cheryl, we don't pay these para-professionals much money and they aren't very smart.  You cant expect much from them.
I was hospitalized the day after Thanksgiving 2006 for a chemotherapy related infection.  I phoned my oncologist and told her I was going.  And when I finally convinced the terrific hospital oncologist to let me out of Duke Hospital despite my very low WBC, I contacted my oncologist.  She was shocked that the hospital oncologist required that I get blood work at the Clinic within 4 days of discharge as a condition of release.  In fact, she refused to see me.
Cheryl, generally, Duke Hospital does not tell the Duke Clinic what procedures and follow ups we are to do.  They do not direct our practices.
Thanks doctor for putting me in the middle and jeopardizing my getting an infection.  No problem.  At the last chemo treatment, my white count was not good.  My Duke oncologist Dr. Gretchen Kimmick advised me:
Cheryl, if you lived in Europe, you would not have even had this chemotherapy.   Let's forgo the last chemotherapy treatment and just put you in a study where we ablate your ovaries.
This option had never come up in the realm of conversation.  I opted to continue the plan.  I also opted to stop treating the cancer after the few radiation treatments I went to.  It just did not matter anymore.  I felt more like a lab rat than a human patient.  As soon as I said no to the ovary ablation, the Duke oncologist said "bye, good luck."


I  have suffered with leg problems since Fall 2000.  Prior to that I was a competitive triathlon.  I have tried to be patient and honest with Duke physicians and surgeons.  And my reward is that I have no physician that will communicate with me or answer questions honestly with me about my health.

Tonight I am in Cleveland.  I tried to get in touch with the Cleveland Clinic orthopedic surgeon.  He is such a great surgeon.  I wish his office would return my telephone calls.  

My Duke physicians won't provide me any pain relief for the leg pain.  So I drank a couple shots of whiskey in order to handle the bone scan.  The techs strap me down and I cried the entire time.  When I was finished, my pulse was 137.  I had trouble breathing, was coughing up strings of blood and panting. At some point this evening the pulse got so high that I got dizzy and I fell and suffered LOC.  I don't know how long.

Cleveland Clinic tells me that if I start running a fever, I should go to a local ED in NC.  I know I won't do that. I will try to get rid of fever and, if not possible, I guess I will die.  

At this point, I just don't trust any medical professional in NC - it hurts to be abandoned and insulted.

Anyway, the one doctor I thought  I could trust says it is fine to stop the medication to control my pulse.  High pulse means that I get and dizzy, fall and suffer LOC.  I have informed his office of that.  That's okay.  He is a good doctor and a nice guy.  He must first and foremost be loyal to Duke.  Duke Medical writes Dr. Michael Blazing's checks.

The one physician I thought I could count on 100% to be my heart doctor and an advocate for me (Dr. Michael Blazing) and he is cool with dropping all heart meds?  Maybe this is a good opportunity to back away from Dr. Blazing like I have with the other Duke docs.  But, I will miss Dr. Blazing because he asked me to trust him and I did unconditionally.  I hardly knew Dr. Blazing but he asked me to trust him and I did.

However, there are some Duke Administrators that have told me that there is a "letter" from Dr. Michael Blazing to Cleveland Clinic and an orthopedic surgeon that will change my opinion of Dr. Michael Blazing.

I wonder why Duke Administrators would tell me this and not show me the alleged letter.  It's like a mystery novel . . . but with my life.

Duke Medical first but not patients first?

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