I am so mad at this doc!!
Ok so heres happend... So I have a dx of Cystic fibrosis from a different clinic not the U of M!!! And I have had this dx for 5 years! and I have been treated for it for more then 6 years.. I have been to many doctors to help me maintain my CF care. And today I exprianced my 5th personnal attack by the doctor. I went in for chest pain and shortness of breath and issues and bad cough. from the weekend. And to ask about doing TPN due to my bad digestive issues. My home health care nurse told me to ask about doing TPN because I have not been doing that well on Tube-feeds.
After the doctor put my symtoms in the computer she turned and said to me "I think your symtoms where just like a panic attack. and all hell started!
I was not dx with CF from the U of MN I was dx by a different clinic and by mayo clinic over the phone. Mayo clinic could not understand why it is so hard to get care for me they think all the other people who would not dx the CF where nuts.
I have an F508 gene and all of the other CF tests like the stools tests have come back with CF I have CF bugs in my lungs like B-capia. my FEV1 is olny 45% and 65% and that's not good but it's not bad. That is how I got the dx for CF plus it has been seen on my chest x-rays by other smart docs.
So back to the story of the day. So this doc goes out into the hall to get a different doc who I have seen before and he was a real pill. He once came into my hospital room when I was in for a Tune-up and asked me why don't you go to school? and I don't understand why your in the hospital. and why do you have a feeding tube he asked me? I am like becuase I have CF and it helps me eat becuase I have severe issues digestiving my food. and most CFers tube-feed. He's like tube-feeding are for people who con't swallow or walk. I was like what the?
So I knew him from past bad hospital stays. Then some how he got the info from the U of M saying how I have one F508 all the symtoms of CF low PFT's sinus issues and then looks at me and my mom who is my gardien becuase I have some issues with my commucation and says the U says you don't have CF! and I don't think you have CF at all says this silly man who has dated info on the whole CF issue.
So thats how he acted to my mom today in the clinic. I left the room becuase my mom who is my guardian felt I did not need to here what this <i>boob</i> was going to say this time. So he says to my mom most CFers are skinny and sick looking and she does not look like that. (Me)
He started to demand names of other doctors I have seen before. He wanted the names of all the mental health care givers I had seen. He wanted verbal permisson to speak with them. He blamed my mom for enabling (me) by driving me to attps for my CF care. He augered with mom about my my dx. Mom told him three times he had "dated info" on CF. and he did.
One doctor mom refussed to give premission to him to speak to them. He asked "why"? "because I am 54. at three months old my daughter began her experiance with the medical community and so did I. I know my rights and I am exersising one of them now.
However, my mom got a couple of refills on my meds.
Ok so heres happend... So I have a dx of Cystic fibrosis from a different clinic not the U of M!!! And I have had this dx for 5 years! and I have been treated for it for more then 6 years.. I have been to many doctors to help me maintain my CF care. And today I exprianced my 5th personnal attack by the doctor. I went in for chest pain and shortness of breath and issues and bad cough. from the weekend. And to ask about doing TPN due to my bad digestive issues. My home health care nurse told me to ask about doing TPN because I have not been doing that well on Tube-feeds.
After the doctor put my symtoms in the computer she turned and said to me "I think your symtoms where just like a panic attack. and all hell started!
I was not dx with CF from the U of MN I was dx by a different clinic and by mayo clinic over the phone. Mayo clinic could not understand why it is so hard to get care for me they think all the other people who would not dx the CF where nuts.
I have an F508 gene and all of the other CF tests like the stools tests have come back with CF I have CF bugs in my lungs like B-capia. my FEV1 is olny 45% and 65% and that's not good but it's not bad. That is how I got the dx for CF plus it has been seen on my chest x-rays by other smart docs.
So back to the story of the day. So this doc goes out into the hall to get a different doc who I have seen before and he was a real pill. He once came into my hospital room when I was in for a Tune-up and asked me why don't you go to school? and I don't understand why your in the hospital. and why do you have a feeding tube he asked me? I am like becuase I have CF and it helps me eat becuase I have severe issues digestiving my food. and most CFers tube-feed. He's like tube-feeding are for people who con't swallow or walk. I was like what the?
So I knew him from past bad hospital stays. Then some how he got the info from the U of M saying how I have one F508 all the symtoms of CF low PFT's sinus issues and then looks at me and my mom who is my gardien becuase I have some issues with my commucation and says the U says you don't have CF! and I don't think you have CF at all says this silly man who has dated info on the whole CF issue.
So thats how he acted to my mom today in the clinic. I left the room becuase my mom who is my guardian felt I did not need to here what this <i>boob</i> was going to say this time. So he says to my mom most CFers are skinny and sick looking and she does not look like that. (Me)
He started to demand names of other doctors I have seen before. He wanted the names of all the mental health care givers I had seen. He wanted verbal permisson to speak with them. He blamed my mom for enabling (me) by driving me to attps for my CF care. He augered with mom about my my dx. Mom told him three times he had "dated info" on CF. and he did.
One doctor mom refussed to give premission to him to speak to them. He asked "why"? "because I am 54. at three months old my daughter began her experiance with the medical community and so did I. I know my rights and I am exersising one of them now.
However, my mom got a couple of refills on my meds.