Okay, all results are not in but I just had to post a frustration. So, while this has been going on for over a month (part of it was while my health insurance hadn’t become effective yet so it was a patient waiting time) and then seeing a doctor and being rushed from one specialist to another. More and more tests (bruised arms to prove all of the attempts to draw blood). So, a little over a year ago after a CAT scan my hematologist mentioned some nodules in the chest/lung area. Knowing they would be going down the lymphoma trail again (yes this would be the 4th time in 16 years), I didn’t pay much attention and it was just something the doctor used to refuse removing my spleen. In the meantime my health was great and job changes made seeing a doctor a very costly thought so it was never explored. Of course the doctor is now saying it was my lack of cooperation… So after seeing the neurologist I was sent to the pulmonary specialist. Keep in mind the Neurologist pointed out the treatment I needed and every concurred, but to date I have not received that treatment. Because of my healthcare providers rules all tests have to be schedule a week in advance…. no treatment in the interim because it could skew results. No that is not the frustration that generated this post surprisingly.
So I sit through a 2 hour MRI, and still weary from that I check my voicemail, my next test, a bronchoscope, is scheduled for the 29th. Livid is not the word for my reaction. I had been calling the Pulmonary doctor, trying to plead my case because treatment for my symptoms is pending, so when I heard this it was followed up with a tirade to the doctor. A few hours later, apparently there was a cancellation the next day and they could get me in… Small victory.
So, navigating the Cleveland Clinc not withstanding I get the EKG and blood work and then went for admitting. All in all a smooth process. So I get in the prep area and the surgeon comes to speak with me. We chat, he explains the procedure, yada yada. Then he says “I don’t expect to find any granular deposits which would indicate Sarcoidosis”, all I can say is the anger rose but all I could do was laugh. If we go back 16 years a biopsy was read as “cat scratch fever”. Every MRI is translated with a preface of “the radiologist report reads” and then the doctor completely contradicts it.
My neurologist, the one holding the key to my treatment is gone this week, so hopefully Monday (7.25.2011) I will hear more. Of course now I am running into how do I continue pursuing this, to include a week of in-home IV steroid treatment, and keep my job.