Re: Re: Hi Dyane

[Guest guest]

Hi ,  I understand about Mayo, It kind of like being treated by House!  LOL  I'm so glad you had a good eperiance at JCL.  My Doctors all have offices right there in either of the two office buildging right next to the hospital.  Dr. Loreman (pulmo) Dr. (GP) Dr. Olshan(hemo and oncol) and Dr. Raniolo (Cardio) have taken care of me and took care of my husband for 7 years.  I love them and I really think they care about me.  I've never had a doctor hug me when things are going bad just to make me feel better!.  Your Dr. Comp sounds like a keeper too.  I'm glad you are on the drug trial.  My doctor tried to get me in one but I had loved too long, is that not funny!  The protacol were for 4 years of less from dx.  I'm glad you are doing well.  Enjoy this time, do something wonderful - my husband and I went on a cruise to Alaska - I firmly believe that a positive attitude makes a world of difference (except about weight loss where women just are screwed) I put on 100 lbs when I first was on prednisone and oh well Im just a round grandma!  Have to go to work now, will tt you more later.  Thanks

Hi Dyane,

     When I was trying to find out what was causing my SOB &  coughing problems, I had visited about 8-10 different DRs between Washington St. and Arizona before I met Dr. Comp in Phoenix, ( he does not work at the Mayo Clinic) he immediately told me that he thought I had a pulmonary fibrosis problem and he ordered a Hi-resolution Cat scan and wanted the Mayo Clinic in sdale to do it, as they had the best radiologist in his opinion. 

      After going to the Mayo (this is a negative story in it self) and getting caught up in their " greater that thou " Doctors & medical progam for a year, I finally got pissed off and went back to Dr. Comp in April and we talked about the pro & con of a biopsy, had the biopsy done May 1, 2008 and had me in a Bosentan Drug trial study program by July and everything has been mostly " Stable " since then with an occassional bad day here and there, depending on the weather, how well I pace myself with my exercise program and watching what I eat.  If I could just stay the way I am now, I would be a happy camper, but we all know that it is just a matter of time-------

     I am not on O2 yet, I stay active by taking my yellow lab (Dakota) to the park 3-4 times a day and throwing the ball and letting him get his exercise also, I only live 3 blocks from the park..

     I had my biopsy at JCL, spent 4 days there LOVED my nursing staff except for 1 girl on the nite shift and they immediately moved her when I raised questions about her " nursing talents. "   My surgeon Dr Derrick Von Hegge did a fabulous job, I felt so good after the VATS biopsy that I told my wife I was thinking about getting one done every other month--LOL.  

     Then Bosentan Study I am in is a blind study so no one knows if I am on the drug or placebo except some dude back at the factory.  I kinda think I am on it because the first blood test they took my liver enzyme count was down and that was an indicator according to the medical journal, so I take a Iron pill every day and that brought it back to normal.

The only other drugs I take is Benzonatate 200mg, it helps me with the SOB and coughing and allows me to get that " full deep breath. "

     If you would like to communicate by phone concerning our Hospital and Dr issues or what ever, just Email me at sngodfrey46@... and I will give you my Phone # .

Maybe between the two of us we can find that " miracle Doctor " in Phoenix to solve our problems. 

   G.  UIP/IPF  5/07  AZ

P.S.  Tell your daughter that Anthem is the best place in the world to raise kids!!!!!!

    

-- Dyane 53  Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosis 08, and Ive forgotten the rest  HA HA