Update on Lungs and Mayo, Not All I Thought It was

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
in Breast Cancer #1

I had a GREAT TIME with my son. Saw wonderful hills, ice forms, landscapes, Amish farms, big city (106,000), different restaurants, shopping at Goodwill and Kmart...but best was time with my son.

Both of us got lost  the Mayo Clinic pedastrian subway at different times!! I went about a mile out of the way... son about 2 miles he figures. 

Thought I loved my doctor. But now I don't trust her findings.

She declared me "cured/in remission." Told me all my test results came back ok, cept my blood sugar (but that is always high on Prednisone).

She said the hypersensitivity pneumonitis was more than likely caused by my little Zebra Finches. Then I had two types of organized pnuemonia. I had Bronchiolitis obliterans organizing pneumonia (BOOP) (hey, at least it has a fun name...BOOP LOL) and idiopathic organizing pnemonia which was probably from the Influenza I had in January 2013!!

Now, I looked up my test results online. My lymphocytes are twice the normal limits, and the leukocytes were high as well. They indicate infection (organized pneumonia) and inflammation (both organized pneumonia and hypersensitivity pnuemonitis). I sent an email to the doctor questioning this.

ALSO, SHE DIDN'T DO A CHEST CT SCAN WHILE I WAS THERE. I never thought to ask for one. I was so tired and worried about labs, lung tests, waiting to see if I could get squeezed in etc).

SO, UNTIL I SEE MY PULMONOLIGIST IN A FEW WEEKS AND GET ANOTHER CT SCAN, I DON'T BELIEVE I AM CURED.

What my Mayo pulmonolgist doesn't understand, is that when I am on high, long term Prednisone, my lungs breathe normally, and as the daily amount of prednisone decreases, the symptoms increase. She is ignoring my hoarseness, breathing problems, chest tightness, and the feeling like I have sand paper in my lungs since going down to 35 and now 30 mg per day.

I think I got screwed at Mayo, so as of today, I am in limbo. I see how she can call me "cured" without an up to date CT Scan showing an all clear.

Comments

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #2
    What?

    I don't understand any of this.  You were so sick and worried and now your doc says you're cured and in remission and yet you stll feel like crap and your labs were NOT normal in spite of her saying they were?  I just don't understand.  I hope you get all of this resolved quickly and there is an explanation.  Limbo indeed!

    Hang tough,

    Suzanne

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    I am so happy that you had

    I am so happy that you had such a great visit with your son!  That is wonderful.

    The rest of it is very troubling and I hope you find more answers.  Most of all, I hope you begin to feel better!!!!  I am so sorry that you have had to deal with this - as if cancer weren't enough!!!  (((Hugs)))

  • SIROD
    SIROD Member Posts: 2,194 Member
    #4
    Paperwork…Tests Results

    Did you get the paper work for the test they did there at Mayo?

     

    DJ

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #5
    SIROD said:

    Paperwork…Tests Results

    Did you get the paper work for the test they did there at Mayo?

     

    DJ

    Mayo has all your test

    Mayo has all your test results, dr notes and medical records online for people to see.

    Bottom line is, she did not perform a CT Scan of my chest and ignored my current symptoms that I still have since reducing the amount of prednisone I am on. 

    Until I get an all clear on a CT Scan, one can not be 100% that it is all gone since prednisone masks symptoms of the lung conditions.

    I just wish I had thought of the CT scan and lung issues while I was there.

    So until then, yes, I am in limbo.

    It is similar to cancer. Until the scans come clean, you can't be sure its gone.

    In the mean time, I picked up some kind of bug..Had a high fever, felt like crap, now have low grade fever, still feel like crap and just need some rest.

  • SIROD
    SIROD Member Posts: 2,194 Member
    #6
    cinnamonsmile said:

    Mayo has all your test

    Mayo has all your test results, dr notes and medical records online for people to see.

    Bottom line is, she did not perform a CT Scan of my chest and ignored my current symptoms that I still have since reducing the amount of prednisone I am on. 

    Until I get an all clear on a CT Scan, one can not be 100% that it is all gone since prednisone masks symptoms of the lung conditions.

    I just wish I had thought of the CT scan and lung issues while I was there.

    So until then, yes, I am in limbo.

    It is similar to cancer. Until the scans come clean, you can't be sure its gone.

    In the mean time, I picked up some kind of bug..Had a high fever, felt like crap, now have low grade fever, still feel like crap and just need some rest.

    How Are You Doing?

    I hope you are feeling a little bit better from the bug you picked up.  Please give us an update on how you are feeling.

    Doris

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #7
    SIROD said:

    How Are You Doing?

    I hope you are feeling a little bit better from the bug you picked up.  Please give us an update on how you are feeling.

    Doris

    I am right there with Doris ....

    How are you doing - any more insight or information ... ?

    Please post when possible.

     

    Vicki Sam

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