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Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Wednesday, July 4, 2012

The Learning Experience

The New Pulmonologist Experience

We waited patiently  in the vintage paneled waiting room.  It was after lunch time frame.  Soon a large robust  woman, who had sweated off most of her make up( but had reapplied her ruby red lips tick), called us back cheerfully. I cheerful face is always welcoming in these situations no matter what condition  it  is  in.  The nice lady had  to take Dake thru the kitchen  break room  area  to get him to the x-ray room. The other door way was too narrow for him to enter.  We went for two other stops before making  it  to the “official “ doctor’s examining  room.  We kinda felt like we had been taken by the arms and swung around in circles like when we were kids.  Finally were able to catch our breath while waiting  on the doctor. The doctor comes in and was reading his file and introduces himself to Dake and then to me. He seemed to me to be in a rush.  He began to ask Dake questions about his cough.  He is asking  his questions quickly. I could tell this question began to make Dake nervous. (He told me later he felt like he was getting the third degree.)  When the doctor asks  about specific  medication or things Dake might not know names of I would tell him specifics. This seemed to irritate the doctor.  The doctor began to ignore me.  So I stopped him and started asking him a few questions…I asked him if he had ever worked with a Duchenne Muscular Dystrophy patient.  The doctor answered quickly in a defensive tone.  He said, “I have been practicing medicine  for thirty years!”  Of course this did not answer our question.  So I continue to look at him for more answers and he blurts out . “I have seen probably (he hesitates) four or five.”  I replied, “O.K., good!  He immediately turns from me and  ask Dake a few more questions.  Then he sits there and reads a little and says to Dake, “Now which muscles are affected with” your” Duchenne Muscular Dystrophy?   Dake blinks three times and replies, “Uh ….All of them!” I then describe  and tell him the progression of the basics of Duchenne Muscular Dystrophy.  In the background Dake looks at me and widens his eyes as to say, “Is he serious?”  My thoughts exactly. We politely listen to the rest of what he said and got out of there as soon as we could.  He had no knowledge about Duchene Muscular Dystrophy. He would have never asked the question he did.   Was it not obvious what muscles are affected when a person in a motorized chair  cannot even raise  his  arm to shake hands with  you . (He just needed to be honest.)

We came home and I called at least seven pulmonologist before I found one doctor who has worked with a Duchenne.  We go later this month so we will see.

I credit this doctor for teaching me something.  He continued to ignore me and I realized if this had been a situation where Dake could not answer  about his personal wants and  needs we must  have legal paperwork in order so the doctors will listen to us. We do not want to be in the middle of legal issues at a critical time with Dake’s health.  So Dake and the family are working on these details….So thank you arrogate pulmonologist.

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