out of the loop

[Cowboy72]

Opps, that didn’t go right!

Well I’m 32 CF male. About 4 years ago I basically got upset with the CF doctors I had and have not seen a CF doc since. Before you start, that will change shortly. But my basic problem is that I have been doing pretty good since then and have not needed (or at least had) a Clean out in almost 6 years. Prior to that, I was in the Hospital every 1 to 2 years. I went from working in hotels in a nice big cushy leather chair to working as a carpenter where the breathing conditions are not always ideal even for health people.

I’ve promised my family I would start getting treated again but I’m having a hard time preparing myself for doctors that “know what is best” verses Maybe I don’t need to see them as often as they want and If I say I’m sick enough for a clean out then just do it rather than wasting a month trying “other options”.

Perhaps I was spoiled. My Doctor was a Woman by the name Mary Ellen Whol and she had a difficult time with me when I was a kid but by the time I was an adult I listened to her and she listened to me. Shortly after she retired I found myself driving 6 hours to Boston for “Clinic” because if I didn’t see them every 3 to 4 months just getting RX refilled was a pain in the butt. I was pretty much told there was a new sheriff in town and I had to do it their way. That and Not having MED INS didn’t help the situation.

Has any one else had gone a long time without seeing a Doc and then had to go back, I'm not even sure how to get copies of my records.

Thanks

Ed

 

[anonymous]

The best way to go about getting your records is to submit a written request to whoever has a copy of your records currently. Most of the time, where you are requesting them from has their own specific form to be filled out. By law they are required to give you 1 copy of your chart free of charge per year. After that they can charge a fee per page and a fee to copy the records. It can get outrageous $$$$$$. After you get your free copy, they are required by law to send any subsequent copies you request directly to your physician (if you don't want to pay) that is now caring for you, and they can't charge your physician either if the records are being sent for the purpose of continuing care. I would recommend that if you get the copy for yourself, when you visit the next doctor, you take your records in but tell them "these are my copies, you can make copies of them but I need them back at the end of this appointment". If you do this method you should probably go in early to allow them time to copy them. This method has worked for my husband and I for years now. That way we have never been charged for copies of records, and we always have our own stash in case we need to refer to something.

Good luck with everything, and at least you are seeking medical care now and if your family gets on your case-from my own personal experience-it's really just because they care, they are concerned and I am the family member of a CFer, so I don't personally have CF or understand what it is like, but i do know that i get on my husbands case someitmes because I am concerned and just don't understand.


Julie

 

[anonymous]

I had Mary Ellen Wohl!!!!! I too got really frustrated with my doctor after she retired. She was great for me...

I have recently switched doctors. I have never just 'left' the hospital like you did. I dont think it would be difficult at all to go back. Do you want to go back to Boston? Your records would still be there.

Caitlin 21 w/ cf

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Cowboy72</b></i><br>Opps, that didn’t go right!



Well I’m 32 CF male. About 4 years ago I basically got upset with the CF doctors I had and have not seen a CF doc since. Before you start, that will change shortly. But my basic problem is that I have been doing pretty good since then and have not needed (or at least had) a Clean out in almost 6 years. Prior to that, I was in the Hospital every 1 to 2 years. I went from working in hotels in a nice big cushy leather chair to working as a carpenter where the breathing conditions are not always ideal even for health people.



I’ve promised my family I would start getting treated again but I’m having a hard time preparing myself for doctors that “know what is best” verses Maybe I don’t need to see them as often as they want and If I say I’m sick enough for a clean out then just do it rather than wasting a month trying “other options”.



Perhaps I was spoiled. My Doctor was a Woman by the name Mary Ellen Whol and she had a difficult time with me when I was a kid but by the time I was an adult I listened to her and she listened to me. Shortly after she retired I found myself driving 6 hours to Boston for “Clinic” because if I didn’t see them every 3 to 4 months just getting RX refilled was a pain in the butt. I was pretty much told there was a new sheriff in town and I had to do it their way. That and Not having MED INS didn’t help the situation.



Has any one else had gone a long time without seeing a Doc and then had to go back, I'm not even sure how to get copies of my records.



Thanks



Ed<hr></blockquote>wow that's so cool. I know Dr. Whol. She is a great doctor yet she always scared the crap out of me when I was younger but as she got older she became a little more rleaxed. Even though she scared me I always felt the safest with her and she knew the best for me. It's sad that she isn't around anymore at the hospital. She was here last year when i got really sick but after that I haven't seen her since she retired. And now the adults at Childrens are about to be moved over to the Brigham so maybe you can find a good doc over there that can treat you. The one I see she is an adult doc her name is Carolyn Donovan. She is really good and definitely think she is a keeper. She is strict yet not so strict that she isn't flexible. I hope you can find a doc that you like.

Nicole 22 CF

 

[anonymous]

PS.

i have learned that you have to be your own advocate. Doctors DO NOT know everything. There is so much more to CF and to health then just drugs/meds. I have in the past year explored other alternative options that I think have made me a much healthier person in general, but every once in a while I know i need a 'cleanout' to jump start things. But I completely agree with you that I would rather just do 2 weeks of IV meds straight out, than mess around with other options, when I know the IV meds help enormously. I'd rather just decide to do it, and do it. Thats what I did a month ago. I told my new doctor I wanted to do a cleanout the first two weeks of december because thats when it worked for me, that I didnt want to wait to get sick, or anything, that I wanted to do it and try to get better than before, not play catch up once I get sick. I basically barely even see or talk to my doctor, I feel like i am my own doctor sometimes!

i am rambling....
i cant believe you had dr. wohl too!

C

 

[anonymous]

Ha Nicole I see Carolyn Donovan now too.

Dr. Wohl was great, you are right she did scare the crap out of me too, but I felt like she was so smart and really THOUGHT about things...didn't just treat every CF patient the same. I had Dr. Dovey during the 3-4 years between Dr. Wohl leaving and my just switching to Donovan in September. I like her so far, but have only actually had two appointments with her. She seems very thorough and good and its good we wont have to switch doctors because of this whole Brigham thing

Caitlin 21 w CF

 

[jaime]

Hey Caitlin and Nicole, Im going to start seeing Carolyn Donovan soon (I see Dawn Ericson now). Im glad you hear you guys like her!! And I totally hear you all about being scared of Dr. Wohl!! She is very intimidating, but a superb doctor!

 

[anonymous]

Wow this si so funny a lot of you are from or near the Boston area. Pretty cool! Ya Dr. Donovan is such a great doctor. Dr. Wohl used to pay me 20 bucks everytime I gained weight, I kiss her <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Nicole 22 CF

 

[anonymous]

Hey thanks for the tips!

Ya’ll are right Dr Whol did scare ya, but she new how to turn CF kids to CF Adults. I can’t prove it but I think she even admitted me for a clean out on time because she and my mother hated my then Girlfriend. We lived in VA and I had great pft’s, X-rays, and lab work. However, I was admitted immediately and what was my usual 10-day stay turned to a 24-day stay. Go figure my Girlfriend meet someone while I was stuck in Boston. Dovey and Ericson I know them! Well, thanks for the advice and info, gota get to bed 5:30am comes early in PA.

ED

 

[anonymous]

Oh my gosh, I can't believe there are so mant Boston people here! I too see Carolyn Donnovan...I have an appointment with her tomorrow as a matter of fact!! I can't say that I'm all t hat pleased with her though. I had Dr. Claudia Ordonez for over 5 years and I loved her style so much, she totally got me. She left on maternity leave and suggested I see an "adult doctor." I just think that Dr. Donnovan is too cold and has no personality what-so-ever. I know she's very smart, but I just can't connect to her...I don't think I've ever seen her smile.

To Ed...I did something similar as you by taking myself off of all meds for one year. The docs at Children's were going nuts and weren't quite sure what to do with me. One year off of the drugs really didn't make much of a difference, but imagine what wonders the meds can do for you after being off for 6 yrs!! Just remember that even if you do go back and the docs put you on what they think is "best," you have the ultimate say in what you put into your body and they'll never know the difference!

Melanie 24f w/cf

 

[anonymous]

Melanie-

I know what you mean about Donovan...I have only had her for a few months but she is hard to warm up to and quiet. However, i am taking all this with a grain of salt because people say that she is very good, very thorough and very smart, which to me is more important than whether or not I could hang out with her haha. I had dr. dovey and he was just too nice, and seemed to gloss over everything, treating me like every other cf patient. dr. wohl was strict and i guess i liked that even though i probably wouldnt admit it at the time.

How long have you had dr. donovan? Have you been hospitalized under her? I am curious what she is like in those situations.

Caitlin

 

[anonymous]

Maybe she is different with everyone because when I go see her I get her laughin. She is really nice and funny once she warms up. She definitely is quiet but she is a really good doc. I feel very comfy with her. She is strict yet she isn't so strict that there isn't any flexibility. I just think for me she is the best doc. I really enjoy her and I think she really listens and takes in what you have to say.

Nicole 22 CF

 

[jaime]

Hey girls, I had to jump into this conversation because Im switching to Carolyn Donovan soon. I too am someone who likes to talk a little bit about things other than CF at my appts....I think that is important! Im always talking and joking with the docs, nurses and PFT people.
Hopefully I will be able to get Dr. Donovan to warm up because I heard she is a wonderful doctor. Someone was asking how she is in the inpt hospital setting?---well, I know she is never on inpatient services but I was told she does come and visit all of her patients when they are in the hospital so that is good to hear.

 

[anonymous]

Since everyone is talking Boston, etc. I would love to see a geographical chart of CF cases in the U.S. (i.e. the estimated number of people from Texas w/ CF, Nevada w/ CF, etc.)
I don't know if it is just me wondering or if I had heard someplace that the Northeastern U.S. has more CF persons than any other region. Do any of you know if there is a chart or any information on the geographical numbers of CF patients?
Obviously, this is not something that really matters, I was just curious <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Did everyone forget about the origional poster?