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coffeelover
11-24-2009, 07:52 AM
Hello my fellow Weggies! Because I am going to see a Weg specialist for the first time next week, I am hoping you all can give me advice on the best questions to ask during my appointment. Just a reminder, my form of the disease is airway and nasal problems.
I am hand delivering all my past medical (from 4 different sites...eehh gad! I doctored alot!)

I want to go to this appt and get as much out of it as I can so please advise me what questions to ask.

Thanks in advance.

Having my Monday coffee break...want to join me?
coffeelover

Sangye
11-24-2009, 08:39 AM
Hi Lisa,
Here's a post (http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/151-tips-dealing-doctors.html) I did about general questions for docs.

Bring a list of all your symptoms, questions and concerns you have. Even if your symptoms are easy to remember, write them down.

Visits to my Wegs specialists are very different from non-Wegs docs. The Wegs docs explain everything about what's going on, what to do, etc.... I rarely even need to ask a question. And I am Queen of the Question. :D

But just in case, these are good questions for you to ask:

1) Does the exam reveal any worsening of the nasal/airways since your last ENT exam?

2) Is he concerned that new areas are now involved? (ie, more than airway, nasal)

2) Does the dr feel your Wegs is active?

3) Which doc(s) does he recommend that you see at Mayo? Who should be overseeing your care?

4) Are there any tests/procedures he'd like to order or to have another doc order?

snooz23
11-24-2009, 02:03 PM
Also there is a good list of questions to ask on the vasculitis foundation website. I used that to make out my list of questions for one of my visits to cleveland clinic.

Doug
11-25-2009, 02:53 PM
Happy Thanksgiving, Lisa Coffeelover! You, Dennis, and the dogs gave me a big boost this year, and I can only hope you have a safe, healthier, and joyous Thanksgiving!:):):):)plus100 (Louie the cat is cool around dogs. "Bring 'em on," he tells me, "Bring 'em on.")

moyan
12-29-2009, 02:31 AM
I used to collect spoons, but for 1 ½ years now I have changed that for doctors! The collection is growing all the time.

katwoman
12-29-2009, 09:54 AM
I used to collect spoons, but for 1 ½ years now I have changed that for doctors! The collection is growing all the time.

Loved your comment Moyan...I know what you mean I get very confused with what doctor does what... and to make matters worse I have a Rheumy and an ENT that are both 'Dr Prowse' (spelt same way and not related) - aaaarrrhh my memory already is a shocker

Doug
12-30-2009, 04:31 AM
My pulmonologist said, "You don't want to do that!" when I told him- almost word for word what you said above!- but truth is, you see so many doctors as as a weggie, you have no choice but to collect them. A scorecard would be nice, though. I've asked doctors for business cards, once I became aware of the problem of keeping them straight in my mind, and that works well enough. In addition, you have information that's handy (specialty, work phone, hospital with which they are associated, etc.) when you are talking with other doctors who may need more detail about your condition than you can pull out of your bean!

coffeelover
12-30-2009, 10:14 AM
the difficult part is keeping your meds list and doc list updated!

Sangye
12-30-2009, 10:16 AM
Thanks Lisa-- that reminds me to update my wallet card! (current conditions, meds, doctor numbers, risk factors, etc...)

Doug
12-30-2009, 01:36 PM
It's endless! But the better organized you are the less time each doctor has to spend filling in blanks or waiting for you to call the information in. It's worth the time to show these ladies and gentlemen that courtesy to the degree one can. (So much for preaching. Now I have to go update my information, too. Once I stopped having so many doctor appointments, I, erm, sort of let this information get out-dated!)

jola57
12-30-2009, 04:20 PM
My rheumy keeps a list of my current medications which show up on the bottom of the prescription. I take a photo copy and keep it my my wallet. Its also helpful when travelling and the airport checks.

Doug
12-31-2009, 08:48 AM
I never even thought about the benefit of having the list for travel, too. That, with your doctor's business card information, and I'd think you could travel safely anywhere. Didn't you have a little medical episode when you travelled to Europe this year, Jolanta? It might be helpful to write about how you handled that again. It wasn't WG, as I recall, but everything starts there for us weggies!

Jack
12-31-2009, 09:05 AM
I always carry a list of my medications together with warning cards for steroids and warfarin.

Sangye
12-31-2009, 10:23 AM
I type up an Emergency info card that I keep in my wallet :
1) Name, address, phone
2) Current conditions-- and past conditions if still relevant
3) Current medications and dosages
4) Risk factors (allergies, immune-compromised, etc...)
5) Main doctors name, city/state, phone, type of specialist
6) Emergency contacts

The only time I had to use it was when I got kidney stones. I was taken by ambulance to the hospital in such excruciating pain that I couldn't speak to answer the paramedics' questions. I directed them to my card and could relax as they read it to the ER over the phone. You never know if you'll be able to communicate.

Doug
12-31-2009, 11:16 AM
Excellent! I'm changing mine today to this format. I have that information, but not in one place.

elephant
12-31-2009, 11:32 AM
That is a great thing to do Sangye. Need to do that and put in my wallet too.

pberggren1
12-31-2009, 12:22 PM
I think that card idea is very good. I think I might get fancy and laminate mine. Hey Jolanta and others, what about Medic-Alert braclets? Does that involve belonging to some sort of system?

onatreetop
12-31-2009, 01:50 PM
I have a list of meds and Docs in my wallet too. ever since my mothers series of events it made a lot a since to have even before I had WG. Now its on the list with all the wonderful additional meds. Never leave home without it. God only knows what the ER docs could think they find that is new????? Thats happened to my mom too. She ended up be tested for over a week in the hospital because of a prexciting condition they thought was new. Oh and had already been corrected with two Carodid art. bypasses. She is 100 percent blocked high in the arts.They cant clear or touch so they bypassed. thank you Stanford UN!!!!

jola57
12-31-2009, 04:45 PM
Glad she is doing fine. Phil, the medialert bracelets simply do not have enough space for all the info but I am going to get one. Just the logo itself alerts the medical personel that here is someone who has health issues. In my wallet will always be the prescription list along with my drivers license and other info.

timbo vic aust
01-01-2010, 11:19 PM
i agree as well to all comment i have got one on the go right now as well
thanks for the layout sangye :)

moyan
01-19-2010, 09:45 AM
I printed the info out, cut a piece of a cerealbox and scotch taped it all over to the back. Sits fine in my wallet. :)

onatreetop
01-19-2010, 10:04 AM
I get to do the same thing for the big JHU day Wed.. I have three more new meds to add to the list as of today. Trying the diartic and betablocker and more antibiotics for infected foot.

moyan
01-19-2010, 10:13 AM
Hi there. I am now on my 4th week with very swollen and red foot. 1 half set of antibiotics did nothing so they put me on IV every morning. 6th day a young doc said that if it doesn't get better or worse, it is not an infection. He prescribe antibiotics again, but I decided to see what would happen without. Goes up and down, both swelling and pain. And red of course. Seeing my trusted gp tomorrow, but wish we had some WG specialist here in Vancouver, Canada. Please tell me about yours after JHU.
Moyan

onatreetop
01-19-2010, 10:23 AM
I will. I saw the prim doc today. There is no punture mark but vagly remember stepping on something but thought it was the right foot not the left. Weriod spot too. Right at the end of the heel but at the begining of the arch on the bottom of my left foot. it is sore and swells throught the day. I have to use it so big it gets and red and warm but only later in the day after use. wore flip flops all weekend shoes hurt. Wasnt yours a hang nail to begin with ??

elephant
01-19-2010, 12:09 PM
Sorry about that Onatreetop and Moyan! I wish you had aWG specialist in Vancouver, Canada. Can you fly to US for a WG specialist one time to see if your on the right track?

Sangye
01-19-2010, 02:00 PM
Moyan, have you consulted any other specialists about your foot?

pberggren1
01-19-2010, 04:50 PM
Oh Moyan! I have to be honest, I am scared for you. Please be persistant with your doctors and insist that they consult with one or more of the WG specialists from the VF with you in the same room at the same time on speaker phone. There has to be some Rheumy or other specialist somewhat familiar with WG in the Vancouver area. Please be persistant and get answers soon.

moyan
01-19-2010, 11:01 PM
Thank you Elephant, Sangye and Phil. I have only seen the doc at the clinic, who has a friend with WG. 2 docs at hospital, of which the younger one said if it is not getting better, nor worse with this IV antibiotics , it's not an infection. Also saw the lungdoc, WG "specialist", who had no comments, but did send me to a specialist on infections for Mon. Seeing my trusted GP since 20 years today and I know he will do what he can for me.
Personally, despite I have never had a remission, I think WG is sticking up it's head again and biting. Cooking has always been my big hobby, but too "lazy" to even think of any delicious meal these days. Also somewhat down, tears come easy. But soon tulips and daffs will be showing and life will brighten up. :)

elephant
01-19-2010, 11:12 PM
I'm so sorry Moyan. It can get so over whelming with trying to track a good doctor especially a WG specialist. Just take it one day at a time. Find a day this week where you just focus on finding that WG specialist. Even if it is far away, that way you met the WG specialist and that person knows you and has done a history/physical/labs...ect. See if your GP or WG pulm can hook up with the WG specialist and call/email and ask questions if something comes up. Like Phil stated you can use speaker phone with a specialist if possible. I am here if you need me.

moyan
01-19-2010, 11:16 PM
Thank you, just having a bad period of time. Concentrating on a solution is the best advice I have gotten in a long time!
I think your appointment is tomorrow and I wish you get all your questions answered.
moyan

elephant
01-19-2010, 11:19 PM
Onatreetop has a appointment tomorrow, I am looking forward to that.

moyan
01-19-2010, 11:23 PM
I am SO together :)

Sangye
01-20-2010, 03:19 AM
Moyan, did you know that the VF docs consult (for free) with doctors around the world? I suggest you call the VF first and ask them how to proceed. That can be Task #1 for Today!