changing doctors....

[tessa55454]

Does anyone ever feel like you are more the parent and the doc is the child. Meaning; you tell them basically in some ways or another how to do there job. I just moved from MN to MA in the last 6 months, and my new doc she's alright, but sometimes I don't think she knows her stuff. Granted, I am a veteran patient, but it's still frustrating.

I asked her about the hypertonic saline, just to see if she new anything, no...not really. Then one of my liver functions was slighted elevated, which could be from dehydration, but I was going to ask her more about, but I don't think she knows. Cause, when she brought it up, it's not like she follow-up and said like why, or this is something you can do...she just said we'll test it in another 3 months, and not to worry about it. I looked it up myself at home. Then she messed up with the dosage for an important med. Guess many other CF people have this dosage, which is an honest mistake, but come on now. Then I had to call and blah..blah..blah.. It's annoying and a waster of time. She's nice which is good, it's just frustrating.

I guess I will see how this next visit goes, maybe come up with some good questions and if she can't answer I think I might try someone else. It's not to be mean, but I came from an awesome clinic and doctor, and he knows his stuff. I go to Childrens in Boston, if anyone reads this and lives in the area, suggestions..? Maybe I will go to Brigham and Women's hospital, it may be better.

Tessa 27 w/cf

 

[JazzysMom]

Since you are a Veteran patient, you probably do know more than the Dr. or at least more about your particular case. If you feel the Drs knowledge in general is in question than I would truly worry or consider finding another doctor, but if it is your own case then "train" the Drs so they can learn about your history & what has/hasnt worked. Remember that every CF doctor seems to have things they do differently. I am fortunate never to have had that problem with my CF doctor. I did have that problem with our local Emergency Room doctor. For years when I would go in there to get stable so I could be transferred to my CF doctor, he would totally disregard anything I said. As if the fact that I lived the illness probably longer that he had been an ER doctor didnt mean anything. The fact that I didnt have M.D. after my name gave me no input. After I became an employee at this same hospital his attitude changed for some reason. I then was encouraged to say how I felt or what I thought & what I wanted before he made any medical decisions. I eventually only went there prior to going straight to my CF doctor if it was literally life/death. We are our own advocates for our individual experiences and must make them known. For years I allowed myself to be "clumped" into the general statistics of CF regarding treatments when I knew I wasnt as much out of it as I should have. It seemed like I didnt know any better. This time around I am speaking loud & speaking clear and its making a difference. It has taken me 30 years & a few scares to get here, but better late than never.

 

[thefrogprincess]

When I started going to the adult clinic at the U of Washington I really had to train the staff there about my case. Understandably by the time they see patients they usually have to have IVs a couple time a year or re even to the point of transplant, but not me. I'm 23 and never had IVs. They wanted to put me on all these antibiotics because that's what they know. I asked if I had the type of bacteria that needed it and they said no. I've been going there for 3 years now and they still bug me about going on TOBI (even though pulmozyme works fine for me) but that's about it. But they got a new RN to run the clinic so I'll have to train her now.

 

[JazzysMom]

It sounds like they are stuck on statistics. Even tho you have never needed IV, what does your xrays, PFTs & blood work show. In my CF office Tobi aerosol is used more as a maintenance thing to try & avoid things getting bad enough to need IV. If you are in good shape & truly dont see a need than I would stand your ground. I try to stay off as much meds as possible without risking my health. It just seems wrong to pump too much into someone's system.

 

[thefrogprincess]

I keep up on what I'm culturing so I know what's going on with me. I really don't need TOBI right now, I didn't even start pulmozyme until a year and ahalf ago. My oxygen sats are always close to 100%, my chest x-rays are clear, and the only thing my blood work shows is that I have a hard time absorbing vitamin E and D. I think that people should really make an effort to inform themselves about there health. The docs are working for you and you can always find another one.

 

[anonymous]

Hi Tessa,
That is an unsettling feeling, not having confidence in your doctor! I have learned over the years to trust my instincts about docs. If you feel that something is not quite right or this woman doesn't know her stuff, I would suggest looking around. I also live in Boston and was a patient at Children's for many years, there should be more than one provider for adults there..... Maybe you could make an appointment with another one to see if they feel like a better fit for you? Or you could try the Brigham or Mass General hospital. Your care is too important not to have confidence in your physician. Good luck! Feel free to email if you have any questions, I am at Mass General now.

Kim
40 w/cf

 

[anonymous]

OOPs! Forgot to leave my email..... knunnari@comcast.net

Kim
40 w/cf

 

[tessa55454]

thanks everyone. I am just kind of tooling around with this in my head. But, to tell the truth, if I got really sick I don't think I trust her.

Kim, I will probably email you just because.

thanks,

Tessa 27 w/cf

 

[anonymous]

I have to agree here. I feel like I'm the doctor and to be honest, I don't like that responsibility on my shoulders. The next CF doc is over 2 hours away & I guess I would make that trip every 3 months, but then if I got hospitilized, there I'd be 150+ miles from my family!
It's a tough, tough spot to be put in, so I can relate! The other day my doctor tried to give me a med without checking my latest sputum culture....turns out I'm resistant to it and I'm the one that had to bring this to her attn.
I'm sure none of us have perfect doctors, but I would like to have one that takes the time to thoroughly analyze things before she makes decisions and not leave everything up to me.<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[JazzysMom]

My CF doctor is 2 1/2 hours away from us. It is really hard when I go into the hospital. I have thought about changing to someone a little closer, but I have been with this group for 30 years. Everyone (including Nurses, Housekeeping, Dietary etc) in the Office/Hospital have seen be grow up, get married, have a baby & know if I have problems with my neighbors. I cant leave that because I hate the drive. That is what makes it worth it plus the quality care I get. Sometimes we have to weigh the pros/cons no matter how much both stink.

 

[anonymous]

We go to MGH and they are great. Good luck...

 

[Emily65Roses]

I didn't read any of the responses, only the very first post. Sorry, I've just got a bit of a headache, and didn't want to read anymore than necessary. So if I repeat anything, I apologize.

As for switching doctors, there's absolutely nothing wrong with that. You have to be completely comfortable with your doctor. A lot of people don't get thoroughly comfortable with their doctors, but a lot of people don't see their doctors as often as we do. A lot of people don't need to trust their doctors as much as we do. Even though she's nice, if you're displeased with her level of understanding or CF competence, you have every right to switch. In fact, I think you should. If I didn't like my CF doc, I'd go nuts. I'm on my third currently. I go to Yale, and my first was Dr. Tom Dolan (he was also Alex Deford's doc), my second was Dr. Marie Egan, and my brand new doc is Dr. John McArdle. I stopped seeing Dolan because he retired. I just recently stopped seeing Egan because she's a pedi pulmonologist, and I started seeing the adult docs my last visit. That's why I switched to McArdle, he's an adult CF doc. I loved Dolan. I loved Egan. I love McArdle. Given all the possible problems and complications, and every little thing that can get involved with the CF, you need to be able to thoroughly trust your CF doc. I've always felt that I can go to my docs with anything, and they'll consider what's best for my health, and still keep in mind what I prefer. In other words, even if what I'm growing is sensitive to Cipro, they may use something different because of how horrendously I react to it (McArdle just did that by putting me on IVs -Meropenem and Tobra- even though his first instinct told him to go with Cipro). I've always felt I can talk to them about anything, even personal junk like breathing problems with sex, or vaginal yeast infections caused by antibiotics, or emotional issues, or whatever else.

I tried one CF doc years and years ago. I want to say that after Dolan retired, and before we found Egan, we tried another woman, named Rosen. I hated her. I was only about 10, but I couldn't stand her. She talked to me like I was a child ("how is your peepee and poopoo?"), and that was when she talked to me at all. Usually she simply talked over my head, asking my mother questions about how I was feeling, when I was sitting <i>right there. </i> I hate that. I may have only been 10, but as we all know, CFers tend to mature faster, and I knew more about my health at that age than anyone "normal" would. And we told her this. Not just me, my mother too. My mom hated how she treated me as much as I did. Reagrdless, she never listened. She continued to talk over me, and treat me like an infant. We saw her maybe twice, and then I told the clinic I refused to see her anymore. That's when they switched me to Egan. Other than Rosen, though, I've loved all my CF docs. McArdle is still brand new to me, but so far, he's great. He returns all my calls within hours, takes all my preferences into account when making medical decisions, but still makes choices that are best for me (even if I dislike them, if they're necessary). He's very sweet, and very smart, and I'm happy my newest CF doc is someone I very much get along with. Also because he's the only adult CF doc at my clinic right now, so if I didn't like him, I'd be pretty much stuck. Haha.

Sorry, I didn't mean to ramble. Basically my point is: Even if you like her personality, if you don't get along well with any trait she has (or doesn't have), you really need to consider switching. I personally would be driven mad if I didn't get along with my CF doc in every way necessary. There's so harm or shame in asking to switch. If you want to, even the slightest bit, I say do it.

 

[tessa55454]

Thanks Emily for your thoughts. I think what is difficult is that I had pretty much the same one or two doc's for my first 26 years, and now I am trying someone new, without the ability to have the doc's I trust right next door, since they are in MN and I am here in MA.

I am still planning on f/u with my doc in MN hopefully annually, just to kind of check-in. I will have to pay a little more since I will be out of my network, but I will just see him and not have a zilion tests done.

I will give her one more try, but in the mean time I am going to look around a bit. Trust is really the most important thing.

Tessa 27 w/cf

 

[JenniferNJ]

I have been dying to reply to this post but for some reason my computer would not let me post here.. I have read all the posts in here for a while now but I met Julie last night in another CF chat site and with the help of the moderater and her help.. I can post.. wahooo...

First let me introduce myself, My name is Jennifer I am 32, I live in NJ, I was dx with CF at the age of 29, I was sick my whole life with lung infections but we changed doctors so much that noone ever caught on till my pancreas stopped effectively working, I also have addison's disease which is adrenal gland failure, diabetes type two, small vessel disease with angina, and well that is enough info for now... we all have our stuff..

I am a nursing student going for my RN, I am almost done, just one year left. It took me a long time to get here since I am in the hospital every semester for a least two weeks.. I started nursing school before I was dx with CF. I currently work in an emergency room.. I know not the smartest place to work.. and I live at home with my parents... moved back in when I went back to school...

Anyway, the reason I am posting to this one first is because I just started seeing a CF doctor in March, Before that I always went to my primary which takes such good care of me, but being that most experienced Cfers feel that it is very important I went. I loved him the first visit he sat and talked to me a but and gave me all the time in the world. I had just gotten out of the hospital then in March so he did my follow up care...but after that my two hour drive was met with a three minute rush appointment....

anyway fast forward a few months, I got sick again.. The Cf center is two and half hours from my house. I got admitted for what I thought was going to be a PICC line insertion and I ended up staying for 8 days of Tobra and fortaz.. During that stay I found my doctor had not been honest with me about my cultures.. I don't normally culture things.... I haven' learned to give a good culture sample yet so I only culture Pseduo once in a while, he totally guessed what I cultured and told me I cultured things that I didn't... then I found other things out like they lost my sputum sample that I gave and then told me I never gave them one..

I need to find a doctor that I can trust, and that can accept that since I was not born knowing I had CF, I don't know how to treat myself, My CF center likes the patients to tell the doctor what they need which is great if I only knew... It makes it worse because of my nursing experience, they think I know more than I do about CF. I am ashamed to say all the things they did not teach us in school about CF and I won't go there with what they did say...


Anyway, I know it takes a while to feel comfortable with your doctor but I am in the same boat.... and to make it worse, I have so many other diseases that need to be treated by specialist that not one doctor can take care of me and like my CF doctor is clueless about Addison's and vice versa....


Thanks for letting me chat,

I look forward to becomming a part of this board... and thanks Julie for all your help.. I appreciate it.. Though I have never responded to your posts I feel like I know you guys and Emily I have been reading your posts for a while and you absoultly crack me up.. I love your honesty and opennness.. if only I could be half as open...and Colleen, are you sure you are not 30 years old?? You have so much wisdom that you put me to shame.....

Jennifer

 

[NoDayButToday]

Thanks Jennifer, I can assure you I am only sixteen <img src="i/expressions/face-icon-small-smile.gif" border="0">. As for my wisdom 'putting you to shame', remember that I have 13 years of living as a CF patient on you <img src="i/expressions/face-icon-small-smile.gif" border="0">... you sound pretty well informed, if I do say so myself.

 

[Emily65Roses]

I've known I had CF from birth, and I'm only 5 years older than Coll, but she often puts me to shame too. Hahaha. I think she does that to a lot of us! <img src="i/expressions/face-icon-small-wink.gif" border="0"> And thanks, I'm glad my openness has been of some help to someone, for all the trouble it gets me into. lol We're (I speak for more than myself, but I'm sure I do so correctly) happy to have you, and hope you stay. Welcome. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[tessa55454]

Jennifer,

Dang...CF is hard enough but having Addison's disease, angina issues, and such.. Dudett, your like hard core.

I hope your doc situation gets straightened out, it's annoying.

Tessa 27 w/cf

 

[anonymous]

Thanks for the warm welcome.. I do plan on staying around this site.... I really feel like I can learn a lot about Cf and other things here as well.. I hope that I am able to contribute, mostly since I am the newbie with CF I can make you laugh, I am always doing something off the wall funny. I could tell you so many stories of me hanging upside down trying to give sputum samples to absoultly denying I had CF for the first two years...(I just have a cold).. I also have recently learned how to spit... still most of it ends up on me, I either spit into the wind or in front of me as I walk but I always used to swallow.. "Girls don't spit" somehow I had that in my head too... I am thinking of inventing a bulls eye target to get my skills up to par....

I like having a place where I can come and share whats on my mind and also where I can get good sound advise....It also has helped me soo, soo, much to see ppl be real here. Some days we have good days and some days we have bad and I like that we can have what ever kind of day we have without being judged for that.

In my home setting, no one ever sees me have a bad day, I am always "together" with the most positive attitude you can possibly fake...sometimes I really mean it and I am okay and sometimes when I feel like exploding you would never know..

But reading these posts, and also on the other web site has helped me to be what ever I am...... I have met a lot of ppl with CF, I went to the transplant games last year with a whole group of ppl. Some of them have become my closest friends..

My most favorite thing that I admire in anyone is truthfulness and being who ever you are, not who ever you think someone wants you to be.. I love it when ppl are gut honest, and I love being around ppl who are like that so much, even if I don't agree with you, I don't care because I love passion and ppls thoughts. THough I will not usually argue with anyone.. I just like hearing ppls thoughts...It is odd that I love that so much in others when I am hardly honest with myself about how I feel.. Odd ball I know

I am getting better though and I am starting to admit I am not superwomen.. (WHat a shock!!!) I even can say the word fart now, which I know you don't know me, but that was the worst word you could say in my house growing up..... and I couldn't say it much less admit I had any stomach issues until recently... My friend John and Jenny got me the Book on Gas which I think is called everyone farts.... anyway..Emily your freedom in this area makes me turn beat red, but I am hoping you rub off on me... and I get free...

Okay enough about me,

Talk soon,

Jennifer.\

 

[JenniferNJ]

OOPs sorry. I forgot to sign in, that last post was me, It let me post without signing in but thought you should know it was me.. I will get this right yet..

 

[JenniferNJ]

OOPs sorry. I forgot to sign in, that last post was me, It let me post without signing in but thought you should know it was me.. I will get this right yet..