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Litttle Irritated With Mayo Clinic in MN

Posts: 1191
Joined: Dec 2010

Well, I got an appt made for Mayo in February with a pulmonologist. My clinic and a Mayo clinic rep. were on the phone with me at the same time.

When the Mayo appt. staff told me she would be mailing me out a packet of information, I asked if they sent me information on the doctor I will be seeing. I told her our clinic has cards with their name, schooling information, specialities (and specialities within that specialty), and a little bit about them. Mayo told me that they don't have those, but I could look up my doctor on the Mayo website.

Well, I tried doing that today and my doctor does not come up on any search on the Mayo Website. I called and spoke to the appt. staffer and it was obvious she didn't care, but I made her care and she passed me onto the Pulmonary Department.

The rep from the Pulmonary Department didn't care either. I explained that she needed to pass this information onto to whoever enters staff into the physician directory becuase it is very important to some patients, like me, to know a little bit about the doctor I will be seeing.

She told me to google her name. I told her I already did and so many different websites come up, some call her an internist, some a critical care dr, some a pulmonologist, and almost all were those websites that just have you rate the doctor and didn't give me an information.

It was obvious that things didn't go how my pulmonologist said they would. First they were supposed to get my info and WHY I needed to be seen there. THEN the appt. would be set up.

I want to make sure I am seeing someone who has experience dealing with severe cases of Hypersensitivity Pneumonitis. I don't want someone who doesn't know much more than my local doc.

I am not spending all this money on a hotel, gas (Mayo is quite a few hours from here), medical bills for someone who is NOT an expert on HSP.

I decided I don't trust the gals on the phone. I am writing my doctor a letter explaining that she is not listed on the Mayo Clinic physician directory and that I want to make sure that she is knowledgeable on severe cases of HSP. If she isn't, I will repsectfully request that she refer me to a Mayo Clinic doctor that is.

Man, I get so sick and tired of this crap. I really think dealing with the mistakes, misinformation of medical clinics is worse than the illness itself. At least in my case anyway, cuz I have had doctors and surgeons make some doosey of mistakes (and in fact, I caught one surgeon last year in an outright lie while waiting for my appendectomy...he told staff that I didn't have LE, that I didn't have any nodes removed and that "I" said I had LE..that he looked in my records and there was nothing. This of course was Bulls^^&t because when I called his boss to complain about his behaviork, she saw it right away...the dx, the OT notes, the surgical notes.the whole shebang...)

Thanks for letting me vent.


CypressCynthia's picture
Posts: 4014
Joined: Oct 2009

At MD Anderson, I didn't have any say in my oncologist.  She was very young and I thought kind of tactless.  However, the great thing about MDA was they ran my case by 12 breast oncologists who agreed with my local oncologist's medication choice (they actually disagreed with their own).  The MDA young onc called me back and was kind of eating crow. 

The trip was expensive and MDA insists on redoing all scans there.  I think that is a waste of money.  I guess the happy news there is that the scan 2 months before had still shown cancer activity in the ribs.  Their scan showed remission, which was due to my local onc's switching my meds.

All in all, I wasn't terribly impressed, but I have such an excellent onc here - I have been lucky.  However, I reserve the right to get a second opinion whenever I am concerned or things aren't going well.

My oncologist laughed when I told him the young onc at MDA didn't agree with his choice of drugs until she got back her own scan and discovered I was in remission.  My onc says that if you see 3 oncologists, they will give you 4 treatment regimens.  He says they rarely agree 100%. 

Is there another pulmonology expert recommended by a doc you really trust?  Do you have to go to Mayo?  Their system sounds similar to Ochsner (in La.) or MDA: high volume and less choice but, ultimately, good care (if you can get to it...lol). 

Good luck!!!  You know I am rooting for you!!!!

Posts: 1191
Joined: Dec 2010

I am really lost right now. I think I will give my pulmonologist's office a call tomorrow.

I FINALLY found some information on the doctor I am scheduled to see in Mayo but I am getting a headache from googling. One website seems to say she is 35 and finished med school in 2010, another says she has 8 years experience. Mayo sure is dropping the ball here, but that is par for the course with my luck. Believe, me, I have terrible luck with medical staff.

Its a toss up...you never know what you will get right?  A new younger doctor could be on the ball, new treatments, etc. But then maybe they aren't experienced enough to deal with some with severe HSP like me. Or, I could get a more experienced doctor who has been around and knows a lot, or they could be a moron.

All of my doctors are from around the centrel WI area, so I guess I will call my pulmonologist here in central WI and see if he knows or could find out someone there.

I am still going to send my Mayo Clinic a letter out tomorrow letting her know she's not on the Mayo Clinic website (I am betting that the phone receptionists won't go above and beyond to let the right person know abut the doc's omission from the website) and asking if she is experienced with severe HSP and if not, please refer me to someone

Posts: 1191
Joined: Dec 2010

The bad news... I was taking my Prednisone wrong for almost a week last month. I was supposed to be on 60 mg/day, but didn't pay attention that I only had 20 mg tablets in the bottle and needed to take three a day, I was only on one.

I finished off the remaining at three a day.

Now I am on 40 mg of Prednisone for 6 weeks, plus the Bactrim antiobiotic three days a week for who knows how long.

I have noticed that depsite having vertigo for the past couple days, my breathing is much easier, I am not crackling when I exhale, am not coughing so hard I have to wear Poise pads, and am not living on chough drops!!!

It feels sooooo good to be able to breathe!!!! The not sleeping is not so much fun. I didn't sleep at all last night, I finally crashed around 8 am this morning and slept for about 3 hours and have been on the go since. I need to be careful though, because my rib and cartilage that were cut into with the thoractomy is extremely painful again. Haven't been able to take anything for pain cuz of taking Valium for stupid vertigo. Can't take both. But I want to take it easy on the pain meds cuz this is a neceassry pain, I need to learn how to live with this new pain, the old stuff from the PMPS, I pretty much know my limits.

Thanks for all your support. Even though this isn't a cancer, it is still pretty similar that there is no cure and that it could consume my lungs. It is just as dangerous...

tufi000's picture
Posts: 742
Joined: Jun 2005

Dear Cinn, the war stories keep coming don't they? Re the exp vs grad dates, they count internships and residencies as experience.  Though we all find out the reasons an organization is lacking in some way it does not help the desparate need for treatment.  I feel for ya Cinn and sleeping or not ( I know THAT one) it is good to hear you are breathing better and may be getting a few things under control.  Thinking of you often babe, don't fall through the ice please.

CypressCynthia's picture
Posts: 4014
Joined: Oct 2009

I just hate that you are going through all this!  I am glad though that you are breathing a little easier.  Sending hugs and warm wishes that Mayo works out!!!

SIROD's picture
Posts: 2199
Joined: Jun 2010

I don't blame you for being upset in not finding information about the doctor you will be seeing at Mayo.  Are you able to talk to some other person at Mayo, their Public relation office?  I also research my doctors, be it here, in the area or out-of-state.  I have at times had real lemons and when it is as serious as your condition, you don't want someone just starting out, to old and etc.

I'm glad you are feeling a little better.  I've done what you did also, more than once.

I am wishing you all the best of luck to find out a little about the doctor and hope you will have some results to help you out.




sandra4611's picture
Posts: 121
Joined: Sep 2013

My husband is retired Air Force. We have no choice of doctor at the very large regional military medical center here in San Antonio. Usually when we are referred to a specialty clinic, we get the most junior doctor, often a resident. The good thing is that all of his/her decisions are passed through a senior doctor. I have had the senior doctor come into the examining room to check me himself and sometimes change the diagnosis or procedure recommended. It's comforting to know that although I might have a young doc with up to the minute skills and knowledge, he/she has to have their work "approved" by a superior who has more experience in the specialty.

Hopefully that is the case for your new doctor.

carkris's picture
Posts: 4554
Joined: Aug 2009

medical care is getting more and ore frustrating. I hope you get the answer and treatment you need.

camul's picture
Posts: 2541
Joined: Dec 2010

I am so glad you are breathing better. I sisnt have a greatb2nd opinion when I went to Johns Hopkins. Dr. was highly praised and rated, yet she was completely unprepared and unprofessional. Over 2 hours are, had not looked at my records or scans which cost me almost 100. to fax and overnite, which her assistant caled 2 wks prior and said I had to do. She cancelled the followup appt and her assistant said she wouldneither call or send it to me. It has been 3 years and I have still not seen anything.
She was only interested in a study she was doing, which my insurance denied. It was a waste of my time and about 3000. with airfare, hotel, food, ground transport, and the dr fee. Was fortunate to get a true 2nd op from City of Hope. They did not charge and used all my records, and were in total sinc with my onco.
I hope Mayo ends up better. Sometimes I think some of the bigger institutions are so busy that the personal touch is not always there. My sister goes to mayo every fey years for ancalcified brain tumor and has alwayd been hapy there.


aisling8's picture
Posts: 1612
Joined: Feb 2010

Here you are, ready to plop down hard-earned money to hopefully be helped by an expert and get some guidance on what to do, how to manage your disease and its symptoms and you're met with a wall of resistance and aloofness. I liked your line "I made her care." We shouldn't have to make them care. 

Glad you're breathing better. And I hope you get answers that help you live better.



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