Navigation

What all would you take to a new doctor (pulmonologist) appointment?

I'm trying to make sure I have everything she might want to avoid duplicating tests now that have already been done but I don't want to take too much-Here's what i have:

  • last 2 chest CT results
  • last chest x-ray results
  • IgG tests
  • IgE tests
  • all of the blood work from a research study last year
  • last hospital admin/discharge summaries
  • labs run in the last hospitalization (I think they ran everything they could)
  • initial PFT (2010), one from 2013 and most recent one.
  • With my number crunching and Excel-I can print and take (if you guys think it would be beneficial) a year at a glance of peak flow numbers by month for the last 3 years (or less).  Medication changes/add/drop are noted on the date changes were made.
  • List of current meds/meds I had reaction to
  • normal post hospital pred taper/neb taper
  • action plan (that seriously needs to be updated)
  • Dates and length of stay for the last 4 hospitalizations  and what we have normally done for meds in the hospital.  

Crud-now that I look at it-this looks like info over load.  I certainly don't expect a new doc to look at all of this but I thought she might want it in my record.  I only have 3 questions to discuss with her (trying to keep it short).  She is the chair of the severe asthma clinic at UAB so hopefully she will have some insight and suggestions.

49
112

Comments 49

  • K8sMom2002

    Hmm … could you have that available in case she asks? Or if she says, "We'll need to get your records," you could say, "Well, I have them here."

    That way you could keep it short and offer whatever she needs out of it. You might have it in a thin accordion file that has tabs so that you can quickly pull out whatever she asked for. Or put it in a folder with Post-it flags labeling each piece.

    Some of this, like your hospitalizations and any surgery, and a list of your meds, you'll need for your intake history, right? 

  • Pljohns

    thanks for the suggestion-I like that.  My hospitalization records are at a hospital she doesn't have privileges at so she won't have access to them.  I wish it was sooner than 9/14 but that's their first available.

  • K8sMom2002

    Good thinking, then, to get everything together! Is there a way to have any x-rays or scans sent to you on a CD? I know I've had to do that with mammograms and other scans when I went for additional testing at another hospital.

  • Shea

    I have a binder with copies of what I think is important… Just individual pages with highlights, and my most recent tests, And diagnostic tests from the past, basically enough to show, hey i have this/these diagnoses from these drs, these were significant health  events, this is where i am at now, these need refills by you, this is my goal….. I think a past action plan, and a blank one is good to have too. And a paper with questions/goals for your appointment. 

  • Pljohns

    That's a really good idea-with everything I have, I may just put it in a binder and let her know what all I have and she can get copies of what she wants but I could tab it out so I could find quickly what she wants.

  • Megan Roberts

    This is such a great idea @Pljohns, I am definitely taking notes here.  This could save you a ton of money and doesn't need to be necessarily overwhelming for your specialist.  If you create tabs or sections for the different categories of your medical history (like lab tests, prescriptions/reactions/dates, action plan, etc), and a questions/goals/summary sheet as the first page(s), she can access any further information she wants quickly.  

    Plus you can make sure all of your questions are addressed.  I often have a list of questions in mind when I step in a doctor's office, and because there is so much to discuss, I don't get to all of them. 

    Let us know how it goes!

  • K8sMom2002

    Lynn, did you ever decide what information you'll be taking to your new pulmo? And how you'd do it?

  • Pljohns

    I think I'll probably tab it out in a notebook and then whatever she wants, I can easily remove for her to copy but it's much better than handing her a ton of papers that she may not want.  Still trying to figure out exactly what I'll take but at the very least, past test results, labs and PFV's 

  • K8sMom2002

    I've done something similar — a slim three-ring binder worked well for me. You may even be able to get a deal on one at a back-to-school sale!

  • Pljohns

    Well, I finally put my book together-I got a 1/2" ring binder and index tabs and put everything in it's place.  If she wants something, all I have to do is pull it and let her copy it.  Here's what I ended up with sections for:  PFT's, labs, hospital info(admit dates/admit and DC summary, post hosp neb and med tapers; tests (CT/chest X-ray) and specialized labs (IgG, tests the research center did etc) and my history PFV's by year or month.  I'll add a list of meds and allergies and that should be it.  

  • Pljohns

    Can't get here fast enough-Sept 14th.  I took half a day off so I don't have to rush back.

  • Megan Roberts

    September 14 will be here before you know it Lynn!  (Although I personally don't want to admit it as I love summer and hate fall allergies.)  Let us know how what you've put together works out.

  • Pljohns

    It can't get here fast enough-I honestly feel like I'm pulling myself along-I just can't get numbers up and keep them up and symptoms gone.  This weather is killing me this year and this morning, I think you could take a knife and cut the air it's so heavy. 

  • Jen

    Sounds like you did a great  job with putting together all of those records.  Hang in there!

  • Jen

    *bumping* this thread as I think there are some good ideas in here for anyone going to a doctor appointment.

  • Pljohns

    Thanks Jen-mine is next week and I spent part of the weekend making sure I had everything.

  • Mandy

    Lynn, that sounds like an awesome plan! I have seen several specialists over the last couple of years. There was nothing more frustrating than going out of province to have the doc say…oh I don't have copies of that…and I was empty handed. That will never happen again. She at least called me back to discuss her thoughts once she did get all the paper work. The only things I might add would be a list of supplements, alternative/complementary therapies, breathing exercises,and actvity tolerance. I think it's important to note these things if you are doing anything beyond the standard medications. I desperately ask each new Respirologist I meet…"Is there anything else I could do or try"? 

    Good luck Girlfriend!

  • RedCoog

    Something I've taken to my appointments is my 02 meter and my PEF handheld. I've done this to make sure my gadgets are accurate to what my doctor has!

    ive noticed that my 02 meter is about 2% lower and that my PEF handheld is almost dead on!

    these are no were as important as the list of documents listed, but they are reassuring to me as I use these two instruments to track my symptoms.

  • Pljohns

    Good point-I know my o2 was on point at the hospital but don't know about now and the PFV I've never measured so am not sure about it either.  It's the same one I've been using for 6 years now so the numbers are consistent for me over the years but not sure how they stack up with the docs number.  Mine are super small so I'll take those too.  I've also had to add the neb with a battery pack for the meth challenge-the ultrasonic neb is just too slow for a full dose of levabuterol when they are waiting to complete a test on you.

  • K8sMom2002

    Lynn, just chiming in here to wish you the very best luck tomorrow! May this appointment give you and your new doc all the information needed to get you situated! 

  • Pljohns

    Thanks so much-I'm NOT looking forward to it and this morning has been tough without any meds.  I do have them with me in the cold pack I used to fly with so as soon as the PFT is done, I'm hitting my normal meds.  I'll let everyone know how it goes when I get back!

  • K8sMom2002

    Hope you get done super quick and are able to restart your meds ASAP. And if you can't work, you can't work. 

  • Pljohns

    I REALLY wish that was true-I have to come back-the floater that is covering has to be somewhere else late this afternoon.  At least I have my meds with me, all of my documents are ready-I just want it to be done.  I"m already coughing and getting tighter and tighter so I need my meds.

  • Pljohns

    Well, I'm back and am a lot less than happy.  They wouldn't do the meth challenge because they sent me the wrong instructions and I have to be totally off all of my meds for 48 hours prior to the test-that's not happening-I could barely breath after just missing this morning's meds-so CT and chest X-ray were fine and spirometry looked good.  I got done with everything in time to take my meds and not get too bad off tonight and by the time the spriometry was done, I needed it.  

    Long story short, even with all of the tests that I had and everything that I took with me, she wants a full cardiac workup, meth challenge, she did a TON of blood work and after all of that, she tells me that she's not a believer in adult onset asthma.  I ask all of the questions I wanted to so at least I got some information.  They scheduled the meth challenge for December and she said she would see me after that but guess when her first available appointment is-APRIL 19, 2018!!!  I ask them what I was supposed to do if I got sick-oh-you can call and we have a clinic that a NP sees people in but no matter what, there is no way to get back in with her until April of next year.  They said she would give me the results of the meth challenge then-I have been there for almost 5 hours today and she wants me to have a test and then not get results until april of next year!!!   this entire city has gone to the quacks with pulmonologists-She said she didn't have any real sugestions or anything she wanted to try-she added cromalyn neb 4 xdaily-if the drug store can even get it (we tried it 6 years ago and they told me they couldn't get it then).  I guess I'm stuck w ith the crazy guy I've been seeing-at least I can get in to see him, it doesn't take 5 hours and he's close to my office.  

    I've not eaten lunch at all-forgot to take a snack with me-and now after all of this, nothing.  I'm sitting here in tears and just ready to be done.  OK fine if I need to stay on the meds I'm on-no big deal, at least they work and I'm use to them  She did say we had the option of the clinical trials and I told her biologics scared me to death and when she ask why and I told her they just hadn't been out long enough to have cancer studies or long term effects, she said yea, your right but they seem to work good for some people so they must be a good option (I'm not kidding-that was her exact words). I won't be back there-guess it's up to me to manage this mess-

  • K8sMom2002

    Oh, hugs, hugs, hugs — I had such huge hopes for this doctor! Do you think your other doctor could request the results of the tests that were done today? Or can you log into a patient portal?

    If she didn't believe in adult onset asthma, what theory did she have about what is wrong with your lungs?

    Tonight is definitely paper plates and a nice long bubble bath.

  • Pljohns

    The labs will post to the portal but they said even if I went back for the meth challenge, that type of test wouldn't post until after a follow up visit.  The only explanation she had for my lungs was that I must have had it as a child and just ignored it.  She did recommend a new neb-the med is so old even the pharmacy can't get it any more.

  • Kathy P

    Wow, that sounds like a really frustrating appointment. 

    Having to be off meds for 48 would be really challenging. Is there anything you can take that wouldn't effect the testing? I'm not familiar with that test, so I don't know. But when I had to be off my allergy meds for testing, the doc put me on prednisone which would not effect the skin testing.

    Ooh, I found a  - not all are 48 hours:

    I would not be OK with having to wait another 4 months to then go over the results though. Can the NP go over the results and consult w/ the doc on how it would impact/change your treatment plan?

    Hugs – I want to scream for you. This disease sucks and to not have easy access to the medical care needed is just frustrating beyond measure!

  • Pljohns

    Thanks Cynthia-that's the same list they gave me-I can take levabuterol just not 8 hours prior to the test and my inhaled steroids are OK but the biggie is the LABA-48 hrs prior to and that is my major controller med. Without it, the levabuterol is more like every 2 hours. The list also has written at the top of it NO ORAL STEROIDS for 4-6 weeks prior to the study.  I'm just really down in the dumps-I didn't expect any revaluations today but I guess I was hanging on to hope that there was still 1 good pulmo in town.  I did ask if the NP could go over the results with me and was told that the NP's only run the sick clinic-they don't work directly with the doctors routinely and for testing like that, it has to come from the doctor in a follow up appointment.  I about blew up at the poor guy scheduling and he had nothing to say whe/n I ask how he would like it to have a test and have to wait 4 months for the results?  

  • Jen

    Hugs Lynn~  That stinks all around. So…there are no practitioners, other than the doctor you saw, who can go over results with you?  That seems surprising.  We have worked with doctors in the past who have NP's take most of their appointments, yet the NP's can go over labs, rx, etc.  Would you be willing to travel to see a specialist?

  • Pljohns

    I'm almost to the point that I'm going to have to.  There is no one else in town.  The way the NP was explained to me was that they take the sick visits only and don't see patients routinely or work routinely with doctors.  What it sounded like was the sick visit clinic is nothing but NP's and is strictly for a sick visit.  I have no problems with NP's-have seen them and yes,in my old clinic, our NP handled most of the routine visits for the docs.  

  • Pljohns

    I"m not sure-we are in central AL and we have really good insurance but traveling expenses would have to be considered.  I have a straight shot to Houston, Atlanta and Nashville without too much trouble.  

  • RedCoog

    @Pljohns,

    wow just ready thru your appointment I feel your frustration, which is very valid! I thought about that comments of traveling to visit a better doctor as well! If the Docs around you don't have the knowledge, it might be time to check out other option!

    so sorry your going thru this!!! 

  • Pljohns

    Thanks REDCOOG-It's been a long time since I've been this down and frustrated.  The docs here are very good BUT they all only want to handle sleep disorders because that's where the $$$ is right now.  the pulmonologist in town don't want to handle asthma-they want the PCP's to handle it and the PCP's don't want to so I'm a person with a disease and stuck between PCP's and specialists in their own battle.  I"m just done tonight-done with the fight and done with trying to figure it out……

  • Mandy

    Oh Lynn, I want to scream for you! What a let down. I can only imagine all the emotions you must be feeling. I flew across the country for a consult and got nada too. So I can feel your pain. In regards to the old school med, I started theophylline and it has helped. Who knows, maybe the one she is suggesting will help? I agree with the gang, don't give up and keep looking (when you are ready). Cry and vent away. You deserve a break. The doc you saw today sounds like she needs to read all the current research! Adult onset is "a thing"! I want to punch her in the face. Sorry this might be the high doses of steroids talking but seriously all research proves her wrong! Hugs friend

  • Pljohns

    Well, UAB wasn't a total waste of time-I sent the dr a portal message because you can't print labs out of the portal and I want a copy of them and also ask what the results of the NIOX test she did in the office were.  I found a Mayo clinic paper that explains that test and what the results are so I wanted to know.  Now I understand why she came back in and said adding more inhaled steroids would do no good-based on the test results, it indicates that my asthma is poorly responsive to inhaled steroids.  If I wasn't on the LABA, I could probably taper them back or come off all together but with the LABA, I have to stay on them.

    I called the group that I have been seeing (and didn't like the dr) and told them that he was very nice and I'm sure very good but after 3 visits, I just wasn't "gelling" with him and could I please transfer to another doc.  They were happy to do that so I have an appointment with the new doc in Nov(they could have gotten me in sooner, but that's when I'm due a follow up).  I've just come to realize that like them or not, I have no choice but stay with them if I want to keep my care in town.  At least with them I can get in within a day or two and if I need it, I can call and tell them what's going on and they will direct admit me instead of having to go through the ER.  There are good qualities with them but that one dr and I just didn't mesh-all he wanted to push was biologics and he gave me no direction with this at all-all he would do was agree with whatever I said,-I'm no dr. and that's what I needed him for.  So, I have new test results to take to the new doc and hopefully will gel with her better-I may as well, I'm stuck with her.

  • RedCoog

    @Pljohns,

    i was thinking about you the other day! I wanted to ask how you were doing! Sound like you are being proactive and getting the most out of the visit.

  • Jen

    Lynn,

    Sounds like a good plan for now. If you have an issue before your November appointment, which doctor will you call?

  • Pljohns

    I'm not really sure who to call if I have a problem-at this point, probably my PCP.  He said if I got sick and couldn't get to pulmo, he would certainly see me and do everything he could to help me so I guess that's where I would start.

  • Kathy P

    So are you looking for a LABA without steroids? Do you also take a long-acting muscarinic receptor antagonists (LAMA)? If so, maybe ask the doctor about Anoro. It doesn't have an ICS, just the combo of LABA and LAMA. I didn't do well with the LAMA, so I'm sticking to the short acting one (currently Atrovent). 

  • Pljohns

    Right now no one is willing to take me off the Brovana (LABA) and with the black box warning on it, you have to take it with an ICS or something like it (LAMA).  I've never tried the LAMA but I think Anoro is really close to Breo and I didn't do well on that at all.  Guess I"m stuck with this, but that's OK-it works for me, and at this point, I just want someone to manage this and write me scripts.  the NIOX test just showed that I'm not receptive to increased doses of ICS-so at least I don't have to add another one on top of the one I'm on now.

  • K8sMom2002

    Knowledge is power, Lynn! And with all the research going on, surely something will turn the tide and we'll have even better answers in the future.

    I like your attitude: "this works for me!" Hopefully you'll have a better working relationship with the new-new allergist in the old practice that you have been seeing. Fingers crossed!

  • Pljohns

    Well-all of the insurance bills are in and that one trip to that one doc was over $1700-glad I am fortunate and have good insurance-it cost me $20.  At least I have the blood work now and recent CT/chest x-ray to take where ever I end up at.

    Still haven't decided about where to go for care-and I'm about so fed up with it all that I just don't  care any more.  Unfortunately, this is one thing that I can't just say "it will work out" because the "working out" needs someone to prescribe my meds!

  • Jen

    Hang in there Lynn!  I hope you can eventually find someone, even if it means having to travel.