Wednesday, July 14, 2010


It's been about 5 months since I left Dr. Facade's practice...unbeknownst to her. After reading in my medial records that she had been writing I needed a phychiatric evaluation, that I seemed severely depressed, and could not "appreciate" my edema yet telling me to my face that she understands what I'm going through, that she's going to get to the bottom of this, oh and prescribing me potent diuretics for the edema she never thought I had.... I fired her.

So yesterday I get a voicemail from her nurse (who was always a bitch to me, probably because the whole office thought I was a nut job) asking for me to call them. She continued to say that they had not received any medical records from my visit to the Mayo Clinic. Dr. Facade has been reading more into the condition "you think you have" and the porphorins (and she didn't know this word and tried to pronounce it at least 3 times before giving up). So If I could please call their office so they can contact Mayo and get my records.

I am preparing a letter to send to Dr. Facade. It will go something like this:

Dear Dr. Facade,

I appreciate your concern in my health care now that almost 5 months have passed since I last contacted you. As you know, I did visit the Mayo Clinic after almost 6 months under your care. In that time, you were only able to send me on a wild goose chase to Atlanta specialists, therefore jacking up my medical bills but leaving me with no answers.

As you have never referred a patient to Mayo before, I'm sure you are unaware of their medical records policy. This policy clearly states that new patients must bring hard copies of all medical records pertaining to their condition. In accordance with this policy, I obtained my records from your office. I bet you didn't expect me to read months of your patronizing notes...but I did.

I know how excited you were at the thought of having a Porphyria patient under your care and your disappointment when your test came back negative. I'm sure by now, with all the "research" your nurse referred to, you have learned that you did this test incorrectly. I'm happy to report that I do have porphyria and am working to determine my exact type. Unfortunately for you, you're fired. You no longer are privy to my medical records and do not have permission to write to any medical journals regarding my case.

Once again, thank you for your recent interest in my health, but it's too little, too late. Good luck with your practice.

Your only hope at treating a Porph


  1. Wooee, now that's a letter! Good for you.

    New reader here. Good luck!

  2. Go get-em Jan, I thought I was the only one in search of answers for health problems and GOOD MEDICAL CARE. I call it "do it yourself medical care". Mine comes with a price tag of $1,027.44 plus co-pays every month for a party of ONE.$75.00 every specialist, each visit, $250 ER visit.$500 for out patient surgery.
    Loved your letter! I was about to sit down and write a love letter to one of my doctors who I just saw as a follow up to the ER visit this past Saturday.He rushed me out before getting all the details I guess he had a lunch date.Maybe it was a play-date!
    Anyway your letter was outstanding! I couldn't have done it better myself .Good luck, I've been battling with these idiot Doctors since 2001.I always get the diagnosis before they do! (it took 27 "Doctors" 2 1/2 years to diagnos my autoimmune thyroid disease. By the time they did I was disabled and 40 pounds fatter.Since I'm all of 5'2" that's alot of weight. "The wizards" wanted to treat me for LUPUS...Yikes! I refused the meds.
    BE PROACTIVE don't give up!
    Best wishes for a speddy treatment.You're in great hands at Mayo Clinic. I was thinking of paying out of pocket and going there myself I'm so fed up.

  3. Thanks for your positive comments on my letter to Dr. Facade. I basically said these exact things... but in a more professional manner. I ended the letter with "thanks for your belated concern", by far my favorite line in the entire letter. No response, but I didn't expect one. I've said my peace and now looking ahead.

  4. That is the best attitude to take. BTW I found your article as I am awaiting test results for Porphrya as well as other conditions! I should get results tomorrow.
    I see you are from the Atlanta area did you go to Mayo in Jacksonville, FL? or did you go to the main hospital in Rochester, MN.
    Bye for now

  5. I love the letter! I'm working on one myself...about 6 months ago I saw my first GI doctor, since I had just had my gallbladder removed we were all thinking I was having some odd complication. I wasn't even able to give more than the symptoms of abdominal pain when he stood up and said you have gastroparesis and here is Reglan, take it before each meal and at bedtime.....First of all, gastroparesis?! Thankfully I had just finished a class on pharmacology and remember something about Reglan.....BLACK BOX WARNING FOR TARDVIE DYSKINESIA!! Thanks but no thanks!

  6. I did go to the Mayo in Jacksonville. For me, it was a big mistake, as you can read from my blog my horrible experience. Dr. Premier said that if he had known more about Porphyria at the time (and he wasn't my official doctor at this time, Dr. Facade still was) he would have recommended going to Rochester because of their genetics program. The geneticist part of my "team" is at Mayo Rochester. Good luck with your test results!

    Sorry to hear about your bad GI experience. I was told I needed my gallbladder out as well when I was 19, just one month after my appendix was removed. I didn't let them do the surgery. Thankfully, you have the knowledge to discredit absurd diagnoses.

    Love and much health to everyone!