Confusion - Report from University of Chicago

[Guest guest]

As many know I recently went to the University of Chicago Medical

Center, one of the 13 Centers of Excellence for IPF. Previously I had

the opinions of the three local pulmonologists and the pathology reports

from the local pathologist and Mayo Clinic in sdale, AZ.

Now the opinion before was straight forward UIP/IPF and no believe that

I had an autoimmune disease or connective tissue disease as perhaps more

appropriately labelled. However, in the Mayo pathology report there were

a couple of items mentioned as atypical. Plus I had some blood tests a

bit out of range, but that was considered a normal variable. Last, I had

also experienced swollen lymph nodes and swallowing and esophagus

problems.

So I got a return call from the nursing coordinator today and she read

from the report that is in the mail. Their findings confirm what they

had as suspicions all along and that is they believe that I do have an

unidentified connective tissue disease. It may well have just not

presented itself fully yet. Also, I've heard they can show first and

then be masked by UIP/IPF. Now, I don't have the report yet so can't

fully review all the findings and details. After I have reviewed, I will

have more discussions with them and they will talk to my local

pulmonologist.

The significance is that if it is caused by a connective tissue disease,

then by treating that disease you can slow down the progression of the

IPF. Which of course brings us to the treatment, which is prednisone.

The recommendation is to start with small doses and then to reduce

further from that. didn't know what small doses meant but suspect

its something like 30 mg (maybe 40) reducing to 20 mg as opposed to the

60 mg often used for PF.

So, I'll start working on my long list of questions when I get the

report. Until then, I'll enjoy San . But looks like I'm going to

find myself weighing probabilities and quality vs. quantity of life

under best and worst cases. I already have a million scenarios and

questions to cover with the doctor. For instance, if I started with 30

mg but found within the first 30 days it was affecting my mental health

enough to want off, how long would it take to get off, having used it

less than 30 days. At what point do you cross the line that creates a

long agonizing period of withdrawal. What are the odds their guess of

connective tissue is right? What if the prednisone works? What if it

doesn't and I've just sacrificed quality of life? Since this opinion is

different than others, should I now have it verified through another

opinion from Duke or Emory, either in person or by sending the tests and

records and slides to one of them?

My neurologist was concerned several years ago about autoimmune but

rheumatologist found no indication. It's always lurked in the back of my

mind. When she just heard my history over the phone, Brown,

nursing coordinator in Chicago, immediately had suspicions, which is why

she chose Dr. Strek who is their expert in PF and Autoimmune diseases.

Now i know why I never liked science in school. I sensed that it wasn't

definitive like math is. I just didn't know it at the time. It's more

like art and I couldn't draw anything if my life depended on it.....lol