What could it be? Immediately like everyone else, I assumed it was cancer. I managed to make myself sick with worry, which happens to be my middle name. When I finally met the pulmonologist, he calmed me down and requested a CAT scan. When the results were back he said, "Well, I’m going to cut to the chase. You need to have a lung biopsy"
"Hey wait. I started this adventure with numb hands. Now you’re telling me I need a lung biopsy. Why?"
"Because I think you might have Interstitial Lung Disease."
Interwhatahoo? I couldn't even remember it long enough to get to the internet.
A lung biopsy? Gosh, the most serious thing that ever happened to me was carpal tunnel. Messing with the lungs was not a trifling matter.
Well the biopsy was scheduled, and yes indeed, I had interstitial lung disease, specifically Pulmonary Fibrosis. I researched PF and found out it was a disease which attacks the little sacks in the lungs and renders them useless by becoming stiff. There was a three to five year life span. There was no cure. I was not happy. I had never smoked. I was a singer. I was 54 years old.
The pulmonologist suggested the second opinion route. He told me he needed to know if I actually had RA. He said that if I did, then Pulmonary Fibrosis wasn't quite the death sentence than if I had primary Pulmonary Fibrosis.
The second Rheumatologist did every blood test known to modern man. While waiting for the results, I decided that my hypertension which had been running rampant for years, despite medication should be looked at by a specialist. He had a sign on the door, Dr. Gary Friedman, Kidney Specialist and Cell Therapies Physician. He is also a transplant doctor. He took one look at my hands and knew what the results were going to be. He switched my medication and within two months my Raynauds was under control.
Ten days after the blood tests, the rhumy called. She told me it is not where she thought we were going with this, but we ended up with a disease called Scleroderma. Another disease I had not heard of. I was 0 for three. I sat staring at the phone, wondering about all of this, when the phone rang. It was Friedman.
"Are you doing anything right now?"
"No,"
"Why don't you come up and we'll have a chat?"
Now I knew things were worse than I had suspected. No doctor invites you up to his office to chat about your blood pressure.
He gave me his text book so I could read all about it. I read way more than I ever wanted to know about Scleroderma. I particularly did not like the last line: There is no cure. The word "No" has never been part of my vocabulary, so it stands to reason that there is no cure was not going to sit well.
After I read the text, Friedman asked me how I felt now that I know what this is.
"Well, to be frank, I am relieved. I am glad it has a name, and especially to know that I am not the crazy woman of Maplewood.
The disease was confirmed at the Scleroderma Foundation at RWJ. I was told I had limited Scleroderma, meaning limited skin involvement. Not too much was mentioned that my organs were going to be affected, progressing toward death.
My team now had 9 doctors in it. All I did was go to
doctors, plus go to work. I was exhausted all the time. It was decided
that I would try chemo to see if it would kill off the affected immune
cells and let the immune system reboot. I had three rounds of intravenous
chemo. Then I had a CAT scan to see if anything had happened. Well, yes
they had. Things had gotten worse. And, I had developed the cough. (Continued)
Page 2 of 5
http://www.allmystemcells.com/