what are your doctor's appointments like?

[Jane]

After reading Liz's post today, I was wondering about other people's experiences.

Our appointments are all very regimented. We go directly into a room, have weight & pfts. The doctor comes in and asks how things are going but it seems she already has an idea about new meds., hospitalizations, treatments etc. We never really feel that we have the opportunity to discuss regular things. We can email or call (via a nurse) with questions, but we never really feel that we have a conversation with her. We are pleased with the care the boys get, but...

maybe we should expect more?

 

[JazzysMom]

If mine are simple checkups making sure that I am holding my own, its cut & dry. I go in get weighed, do pfts etc. Go in speak to doctor, review info, discuss how I have been, SHe looks at me, listens to me & TOGETHER we decide how long before I come back. If I am having problems of some sort that all this holds true, but in addition we address in detail what the problem is. If its changing meds than she will try to give me samples to make sure it will accomplish what we want before I spend the $$ on copays at the pharmacy. If it requires another doctors input like an ENT (last appointment I met with him) then we arrange that as well as anything else that needs to be done. IF I have been slacking off, she gives me the "eye" & again we decide TOGETHER when I will be seen again. I am not sure what you are looking for, but I will say that if I had a problem come/go before my appointment that I dont mention it unless it happens again by the next appointment. So many things come/go with me that if I addressed EVERYTHING, she wouldnt have time for anyone else! lol!

 

[folione]

I think I know what you mean. The appts. for my son (3 years old) follow a routine and the Dr. is always busy - so it ends up being up to us to take control of the visit if we want it to go a certain direction conversationally. The one thing we've really had to work on is getting the doctor and nutritionist to tell us what's on their mind not just for today but looking ahead or to explain the conclusions they are reaching when they prescribe something.

If we don't press them, they'll just make an assessment and prescribe whatever it is they think without really explaining the why and wherefore of what is leading them to their conclusions - or more importantly, without getting our input about whatever it is they're seeing.

Our clinic has a social worker on the team and we find that she's generally the most patient one for talking to - sometimes we've enlisted her to help slow things down with the rest of the team.

 

[skh]

I have to say my daughter's local doc and the one at the U of MN has always been very good about visiting with us and allowing us to ask any questions that we may have. I know that I have been getting better about jotting down things that I want to discuss. It seems like if I don't do that then I forget until after we are on our way home what it was that I had questions about. I do know that my daughter just wants to go be weighed, do her pft's and have as short of a visit with the doc as possible. So, I annoy her when I come with questions in hand <img src="i/expressions/face-icon-small-smile.gif" border="0"> oh well!

Sue

 

[anonymous]

Local clinic drives me nuts -- we've had disagreements with them about the community waiting room and this last time we were there for over 4 1/2 hours and for the first hour and 15 minutes, we waited in the exam room. Also, it seems as if all their CF patients are put on the same medications. DS was put on pulmozyme last fall because "that's just what they do, when they do it". When I asked about hypertonic saline last week, I was told DS wasn't sick enough and until he started coughing up mucus, they wouldn't recommend it. Apparently we're the rebels in the group 'cuz ds's primary physician is a CF doctor in the cities. According to the notes from the appointment last Fall, all they did was sit around and criticize the other doctor. They always seem so surprised at how well ds is doing.

With the clinic in the cities, the nurse usually puts us in a room and checks vitals. We rarely run into any other patients wcf at this clinic. The doctor and I go over ds's medications and I usually have a list of questions, he examines DS, visits with us about any changes -- why he thinks ds should be on certain meds, he talks to us about what ifs -- what to do if he gets a cough... Future treatment options, medical research... The other thing we like is how accessible the doctor or nurse is if we have a question -- even after hours if there's been an emergency they'll call right back. Local clinic -- we are forbidden to speak with the doctor or his nurse -- someone just calls to pass on a message.

Liza

 

[thelizardqueen]

My appts are as follows: I go in, my nurse weighs me. Then we go to a room, and her and I sit down and I tell her about all my concerns i.e. what I want to talk to my doctor about, etc. She listens to my chest (its always my nurse listening, not my doctor), finds out how I'm doing health wise, then we do a couple of breathing tests (I'm not sure if they're pfts or not - I breath into this spirometer machine), then my doc comes in and follows up with what my murse and I discusses. If its an appt where I'm getting pfts done, then I do those before I see the doc, followed by x-rays. I don't like the fact that I see my nurse more then I do my doctor. Its like I'm relying my health on her, and she's even admitted to me that while she is a respiratory nurse, she has a limited knowledge of CF.

 

[catboogie]

every one of my appointments -- sick or well -- is a sit down conversation with my doctor. he has his standard list of questions, which i am free to explain as much about as i want. then i usually have a few things written down that i want to talk about, so we talk about those. he will also always ask, usually at first, a general "how are you doing?" question where he really is looking for me to say overall how i am -- health, what's going on in my head, have i been stressed, working too much, etc. then he will examine me.

after that, he goes and chats with one of the senior physicians and then they will both come back in, the other doc examines me and answers any Qs my doctor couldn't.

i love my doctor!!! he is so awesome. he always makes me feel like he is there 100% when i am talking to him on the phone or at an appointment. i am very lucky.

in a situation where you feel you are <i>not </i>geting what you need, it is difficult to ask for more. clinics have ways they do things and they are so busy patient sit-down time gets cut. all i know is that since i have experienced what i have now, i could never ever go back.

laura
seen at University of North Carolina at Chapel Hill

 

[anonymous]

Liz,

I feel for you 'cuz it doesn't seem like you're getting the healthcare you need and you don't have many/any options for CF care in your city. I can't believe that the doctor doesn't even bother listening to you and relies on the nurse to do so. Heck, even regular doctors don't really seem to know what they're listening for when it comes to cfers. I don't know how many times I've taken DS in for a cough and have been told his lungs are clear, he sounds fine -- only to take him for a CF appointment a week or so later and get chastised 'cuz he's got an UR bug.

Is this something you can talk to your doctor about during your next appointment? Tell the doctor about your concern... You're paying for a doctor's appointment not a nurse visit... Liza

 

[RoyalPrince]

at my clinic we sign in and wait for a nurse to check our usual height, weight, tem. etc.... then go to a room and wait a bit... usually a student comes in to ask a few questions trying to get a feel for how you are doing at the time... nurse comes to go do pfts... go back and wait a bit for the doc (sometimes a nutritionist, social worker, etc. will come in-between)...

personally my appointments are pretty quick 45 min to an hour sometimes a little slower but not much... the good news is i am in a position to help change that as they have asked me to volunteer for a satisfaction/how we doing type group... group of us (doc, nurse, patient, parent of cfer, student resident, and a few others that i'm not real sure of their titles)... basically we meet once a week and discuss different things about the clinic and its compairison with other clinics in the country... so hopefully i learn quite a bit and help them just as much...

 

[JennifersHope]

At my clinic, It is the same everytime. I get there and register, then I go directly to the Resp. Room. My RT talks to me asks me what meds I am on and how my vest is going Then she asks me if I have any questions..SHe weighs me and then does my PFTS, not full ones.. but the spirometry.

The only schedule one patient every 15 minutes for RT so I have never seen another CFer there..

I am always by myself, After I am done with RT, she walks me over to a clean room.. then my social worker comes in and we chat, after she is done, the nutritionist comes in, when she leaves my nurse comes in and does vital signs, and tries to find a clinical trial I could get in to.. Then my doctor comes in, the last few times I have not enjoyed his mannorisms toward me..Our personalities clashed twice... but I am hoping it will change soon...after he leaves, the nurse comes and writes the scripts for whatever I need....

It has been like that always, my nurse, nutrionist, and social worker are alway available via pager or email.. My nurse emails back everytime with in a few minutes, except in the middle of the night...

They are always there for me. If I needed my doctor I would always go through my nurse.. She knows the ropes and stuff so well...

 

[3timesthefun]

Our clinic visits always turn out to be a little chaotic and usually last about 3 hours, just for doctor visit and pft's. I have to go to a different facility for x rays and blood work. The one thing I hate about our clinic is that they hand you a beeper and send you down the hall to the waiting room, which is also the same one used for the emergency room patients waiting to be seen. YUCK! During our last few visits we have always seen other cfers, while we are waiting for PFT's. They take their weight, height and vitals, and then the nurse asks what meds, etc they are on. After this the doctor comes in for a quick assessment. I have three and she is always flipping back and forth between charts and getting everything confused. I can't blame her though it is a lot to keep straight. I have asked to schedule them separately, but they always seem to be put together. I guess it saves a few trips, and a lot of gas money. By the end of our appointments, I almost always forget to ask her my questions, because she seems so frazzled, even if I have them written down.

 

[nobody]

Ours are really the same too, but I feel like I have great input into my own health.
Go in - register & pay (of course)
Weight and vitals.
Into exam room - wait for usually student doc.
Answer 1 million questions about how I'm doing.
Student doc goes and gets the REAL doc and we talk more about how I'm doing.
PFT's are with a RT in another lab. usually takes about 15 min in here.
Back to my room to meet with dietician, social worker (sometimes) and lastly with the Doc again.
This team of doctors really listens to me. If I'm not feeling well, they try to find out if there are other problems other than CF - in addition to it. Sometimes I feel fine - but the PFT's are not up to par. They listen more. Sometimes the PFT's are fine - but I feel bad.
In any situation they try to analyze with me what the best way to work on it. Sometimes hospital - sometimes not.
Also I have beeper and cell #'s of the doc's if I need them.
I think it is important for the patient and doc to work together - not to be told what to do but work together.

 

[Ryleigh]

I feel my doctors listen to me, I guess the biggest thing is let
them know you know your body and you listen to it! Learn all you
can so you know what they are talking about and then always ask
lots of questions and don't feel bad about taking their time, you
pay them!!!!!

 

[Emily65Roses]

I'm a big braggart when it comes to my CF doc. I love him. <b><u>LOVE LOVE LOVE</u>!!!</b>

We do a lot of the typical stuff. They measure my height, weigh me, have me do PFTs and spit into a cup. Then I go into the room (always with Mike) and we wait for McArdle to come in. He comes in, asks me how life is. Asks about school often, life in general. He includes Mike in the conversations where it makes sense. I like that too. My boyfriend, who's very important to me, isn't a fly on the wall. McArdle makes sure to acknowledge him too. Then he gets into the regular questions, meds, spit, bowel movements (he always laughs at that one, saying it's his "favorite" question), appetite, my cough, etc. But he's so great. My last appointment, he came in with a med student (they often bring them in with me because Yale is a teaching hospital and because I have never objected to being seen by students also), and one of the first things out of his mouth was... "Can I take off your shoe and show her your tattoo????" (I have a tattoo of the periodic table of elements for sodium and chloride [=salt] on the top my right foot). He thought it was great, took off my shoe and sock and showed it to her.

One of the best best best things about him is that he listens to what I say. If my PFTs are fairly stable, but I say my cough is getting in my way, instead of pulling out the PFTs and pointing at them, he says "Okay, well your PFTs are pretty good, but if you feel this way, let's see, what can we do?" And he'll come up with an idea or two, let me have a say in the choice. If he prefers Cipro, but I tell him "it makes me crap my brains out for two weeks straight," he'll find an alternative.

He treats me like an adult, like I know what I'm talking about. He respects me. And he's very friendly and approachable. I email him from time to time, with questions or comments, and he always makes it a point to be personal, instead of just "medical babble, blah blah, signed DR. MCARDLE"... he actually always signs his emails to me "John." No McArdle, no Dr., just John.

I'm done bragging now. Hahahaa. I just love him, he's positively fantastic. Best CF doc I've had, and my other ones haven't been bad.

 

[debs2girls]

They still havent done PFT's on my daughter, maybe she is too young. I think we spend way too much time waiting for the dr, so when he doesnt come in, it is like a let down or something...lol.
I called today to try and get Cheyenne in to see the dr. They told me they didnt have any appointments for Tues or Wed and the dr was going to be out of town on Thurs and Fri....so I guess I will just watch her and if needed, take her to the ER.
What do you all do in that situation, go to your primary doctor?

 

[anonymous]

Liza!
I figured you'd have something to say about this topic! So, things not going any better at the clinic, eh? You have my email....

Anyway, I will respond to this with my military CF clinic I used to go to, since I just went to my first clinic in a different city. Here was our "agenda"....

Check in ( bp, hr, weight, etc. ) and go to a room (or, in some cases, have a tech that has no idea that CFers shouldn't wait in a waiting room, so they make you sit in a waiting room until someone wiser comes along and says I must have a room... somtimes, that wise one was me, if there were any others in the waiting room! lol)

Do PFT's with RT.

Meet (in any given order)....

Doc (very friendly and willing to spend all day with you if you have lots of questions... of course, they are on a fixed pay scale being military and all.... lol) This may or may not be the same doc I usually see based on any deployments, etc.

CF Nurse (also the one who takes blood if needed, gets paperwork signed, chats about any "issues", etc... She really did it all!)

Nutritionist (usually has little or no experience with CF... mostly a different person/rank each time.)

Geneticist (I know... impressive for a government-run hospital!)

Psychiatrist (Again, are you shocked all this at a govt. facility!?!?) Sometimes, she wasn't there, but most of the CF patients meet with her personally at another base nearby if need be (I took full advantage of this!)

Social Worker (I only saw her a couple times though, and not very helpful, really. The nurse did most of what the social worker should/could do.)


Basically, my CF clinic kicked A$$!!! They really were great and helpful! Also, they were usually pretty germ conscious.... except the techs who had no idea how you get CF.

The only drawback was the military ER (which I used twice).... its first come first serve, they do not call your doc for you... just a guess at what to do with you until the next business day (as long as it isn't a federal holiday). I waited in the waiting room the first time for an allergic reaction with a slew of flu-sufferers (for about 4 hours in the waiting room!) until I claimed my throat was closing up... they got me to a room pretty quickly then! lol....

The second time, I told them I had no immune system and needed the first available room. I only waited about an hour that time, and was put in the nurses' triage with only a curtain seperating me from other patients with unknown ailments.

Anyway, that is/was the only drawback.... you don't want to get sick on a weekend, weeknight, or federal holiday.

I really do miss them at that clinic. They were all like friends more than docs!

Sonia
(aka "anonymous") <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I'm a big braggart when it comes to my CF doc. I love him. <b><u>LOVE LOVE LOVE</u>!!!</b>






I'm done bragging now. Hahahaa. I just love him, he's positively fantastic. Best CF doc I've had, and my other ones haven't been bad.</end quote></div>


WOW Emily, I love him too! Now I'm jealous.

Jane

 

[ashton2005]

Hey everyone! we go to Riley Hospital For CHildren. We are usually told to get there about 10-15min early well then we sit out in the waiting room whether it be the pulmo doc the surgeon or the GI doc for almost 15-20 min or even longer until we get to go to a room and we go to our pulmo on CF clini days and there are always others in the waiting room. I do know there are a few other people on here that go to Riley but in general what are your waits like in the waiting room before a nurse comes to get you??

christi
ashton 5 mo old with cf
abbi 5yo without cf

 

[anonymous]

After last year after we walked out of a clinic appointment after waiting in the hallway outside the waiting room full of other CFers for 45 minutes --- our wait times have been 5-10 minutes. Then we cool our heels in an exam room for half hour to an hour, but at least we're in a private room.

And in the cities, sometimes we have to wait in the waiting room, but we're usually the only people there. I always schedule the first appointment after lunch, so we're the first ones there -- think it gets a little more crowded toward the end of the day when school gets out. Liza

 

[Faust]

"what are your doctor's appointments like?"


First, after i'm in the waiting room in my open ended paper outfit, the nurse comes in. She looks strikingly similar to jenna jameson. She is wearing a very tight, white and fire engine red nurse outfit and black stilleto heels. She looks at me with pursed lips and says "So patient, I think I have the cure you need", starts to walk toward me, and this odd 70's like bass guitar heavy music starts playing out of nowhere...


I can't share the rest due to pleasant conversation and all that, but am I the only one this happens to?