Need advice about St.Louis CF program

[Bengalsfan]

I have been released from the adult cf program in St.Louis , after six and a half years of belittling abuse I decided to stand up for my self against a certain someone there in the office at my worse time of need , was refused health care , and 2 weeks later released from the Barnes Jewish hospital. The certified letter I got sent said that the cf clinic was releasing me due to the extensive verbal abuse to the staff and that I should find health care Some where else. So 10 months later Im stuck with these little pee on Doctors who can't hardly spell Cystic Fibrosis treat me. And it is down right scary. So I tried to get into Vanderbilt Hospital and Not only did I get thrown out of the Cf clinic in St. Louis . But my Health records have some kind of incriminating info that Lead Vanderbilt to think I was the bad seed and I was told no they wouldn't treat me. All this for telling a woman that I wish she had cystic fibrosis for one day so she would know what it felt like . so when she is tell patients you don't need medication, just maybe she is wrong.So anyway I tell her that she tells the Doctor something so bad that He signs a certified letter to throw me out and Im stuck with No CF Doctor. So I ask ?? Has anyone had problems or having problems with anyone from ST.Louis Barnes Jewish CF Program??

 

[jamey]

i go to st.loius...i see rosenbluth and atkins....but i get along good with all of them....i've been on 3200 about every other month the past two years, so i deal with them on a pretty regular basis, but never any problems with them.

 

[anonymous]

I am not from St. Louis, but I wanted to maybe give you some advice. Before you go to another doctor request a copy or two of your medical records and pick them up yourself. They are your records so there should be no problem with you getting a copy. That way one you can look and see what is in it. If you request everything whatever negative comment should be included unless they remove it before making a copy for you. Then make an appointment somewhere else and take the records to them yourself. If they ask for the doctors office so they can request them, simply say you have a copy you prefer to bring because you have been having difficulties getting things taken care of in your prior drs office.

This way you can take the records in and if the negative remarks are included you can explain the reason for leaving your prior drs office to the new dr before he ever sees the report. If the negative comments are not included then there is no need to mention it unless you want to. Just try to remain calm and try not to point fingers at your previous dr. My mom works in a drs office and will tell you that most drs look out for each other, so if you are saying disparaging things about your last doc the new doc may take that as a bad sign. Just say you had an encounter with one of the staff members whom you felt was out of line in the way they were talking to you and that they were trying to give you medical treatment and play the roll of the dr. when they were not qualified to do so and when you commented about her remarks the situation in the office became uncomfortable and after discussing things with your last dr you came to the conclusion that you may need to seek medical care somewhere else. Or something like that - give the impression that it was a mutual decision and not you being kicked out of the office - being kicked out of the office seems worse than agreeing with someone that leaving the office may be the best thing for you.

I hate that you are in this situation. I can understand your frustrations and the office persons frustrations in the situation, but to make it nearly impossible for someone with a chronic illness to get medical care is just wrong. I hope that the situation works out for you.

I really hope things work out for you.
Best of Luck to you,
Lindsey
23 w/CF and CFRD

 

[Faust]

Wow this would be a totally sucky situation to be in. I hope you get it resolved somehow and find some good CF care.

 

[anonymous]

Bengalsfan,

Email me at CFcndlelady@aol.com !!!

Caren

 

[Bengalsfan]

Thanks.

 

[anonymous]

HI thanks for responding , I wanted to point out that I think Rosenbluth is a genious and Atkins has real good bed side manner, and that Im not talking about either doc, It is someone else there in the office who has a lot of say. And every cf patient i've ever seen there at 3200 has horrible horror stories. Shoot even some of the Respitory Therapists have trouble with this person. Don't get me wrong Im not a bitter person this happend almost 1 year ago And Im just now saying anything. My mom is made at me because she wants me to talk about it more and tell me story because when I got the letter of dismissal I never contacted any one at barnes I just rolled over and took it. So I was just trying to reach out and release. There are no cf therapy groups or self help groups or anykind of support group I never have an apportunity to express my self. so Im just trying to heal. No trying to bash but just I don't know do something. I guess just looking for a cheering section. thanks though sorry if I have bothered you ... bengals fan,

 

[anonymous]

I totally understand that you need to just get it out. I do the same thing. I just ramble to my friends and fiance about things that happen to me that bother me for a few days, then once I have sufficiently stewed or ranted I am over it. I am sorry for my prior post, I think I misunderstood what you were posting for I thought you were maybe looking for advice on how to go about seeing a new doctor.
It can be very frustrating though when you feel there is nothing you can do about a situation. I hope things start to get better and that everything works out for the best.

Best of Luck,
Lindsey
23 w/CF and CFRD

 

[anonymous]

I had a situation once where my doc was a total you know what. the office people were fabulous, so I felt so bad leaving, but this guy would actually text messsage, play with his Sidekick, and take calls from his wife and kids while you were in the exam room at a visit, trying to explain your symptoms.
it's hard, in your case, the docs are great, but all it takes is 1 nurse to make you miserable.

Christian

 

[anonymous]

Bengals fan,

I know exactly who you are talking about!!! Email me and we can discuss!! Email address is in an above reply!!!

Caren

 

[anonymous]

yes one nurse can take away your hope from you, they have more pull and power than you'll ever know .. I just have enough to fight , meaning illness than have to fight with care providers.. One of my probs is they are never consistant one month they tell you this is how things are and then you follow there guidelines and then they make you feel., like a fool because all of a sudden there guidelines where never like that and you have to follow other protocols, but things change. And I never ever hear of any new medicines or new procedures just same ol. too bad huh. but anyway my big prob now is with out current cf specialist I don't have a shot at a lung trans. So kinda feel railroaded right now . thanks for replying feel free to email Jay, Bengalsfan75@excite.com

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>HI thanks for responding , I wanted to point out that I think Rosenbluth is a genious and Atkins has real good bed side manner, and that Im not talking about either doc, It is someone else there in the office who has a lot of say. And every cf patient i've ever seen there at 3200 has horrible horror stories. Shoot even some of the Respitory Therapists have trouble with this person. Don't get me wrong Im not a bitter person this happend almost 1 year ago And Im just now saying anything. My mom is made at me because she wants me to talk about it more and tell me story because when I got the letter of dismissal I never contacted any one at barnes I just rolled over and took it. So I was just trying to reach out and release. There are no cf therapy groups or self help groups or anykind of support group I never have an apportunity to express my self. so Im just trying to heal. No trying to bash but just I don't know do something. I guess just looking for a cheering section. thanks though sorry if I have bothered you ... bengals fan,<hr></blockquote>


See, this is why humans were given deviant brain/soul sections in the first place. I dunno, maybe where I come from, it's an evil existance, but whenever some person or entity does something uncool or acts a certain way, and my life is screwed due to their actions, well, your course of action should be obvious, for the most part. I wish you the best regardless, anonymouse. You have enough crap constricting your life, like the rest of us...Don't feel guilty for getting even, or turning old school biblical on anyone else.