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Sunday, November 23, 2014


Thursday I spent 4 hours being interviewed and tested to see if I will qualify for the drug study.  The questions weren't hard.  The testing was.....hmm, difficult.  I had to do several tests to evaluate my lung function.  They involve sucking in air and then blowing it through various tubes.  Whenever I do this it sets off a long, long coughing spell.  Wears me out kind of quickly.

I did find out two interesting things during my last appointment with Dr. M and this appt. with the nurse practitioner.  First of all Dr. M said I can make beads some of the time if I wear that big ole respirator all the time I'm making them!  That made me kind of happy because the thought of breaking up my studio was hard.  He said that lungs that are affected by metals, silica, and glass particles are usually involved in the upper lobes.  It's my lower lobes that are the most affected right now.  K, the nurse, told me that my CT scan does not show any asthma at all in my lungs.  This means that during the last 5 years or so, when everyone thought I had asthma, it was really the beginning of the Idiopathic Pulmonary Fibrosis, which from now on will be referred to as IPF.  So that means I've had this longer than I thought and just maybe I am on a slow track.

I will know if I get accepted into the drug study in another 3 weeks or so.  I do hope I get in, even if I get the placebo.  I would feel like I was doing something positive about this disease and maybe it could be stopped for people newly diagnosed.

I am still mostly in a stupor about all of this, but it is becoming more real to me.  I don't cry as much as I used to, which is good.  I have some great friends who make me laugh and that is a wonderful thing.  I'm ready to fight this thing head on, there is just a little bitty part of me that is scared, but I am determined to be positive. Thanksgiving is coming...let the party begin!

Monday, November 17, 2014


Wishing this was all just a bad dream, but it's not.  I went to see my mom last week for her 92 birthday.  I also got to spend some time with my step sister who has Large B cell non Hodgkins lymphoma.  She's getting chemo right now.  She has a great attitude and I want some of that to rub off on me.  The hardest part for me is sleep.  I'm always tired when I go to bed, so I go to sleep pretty quickly, but after 3-5 hours I wake up.  Since I've rested, I can't go back to sleep easily, and I start thinking......not good, and my step sister said she used to do the same thing.  She told me NOT to go there, ever.  She gave me some suggestions on entertaining myself (solitaire via computer, reading, etc)  I'm taking her advice
Friday I will be evaluated to see if I fit the protocol for the clinical testing of the experimental drug.  If I make it, I hope I am lucky enough to be one of those who get the drug being tested. However, it is what it is. I'm just working on taking one day at a time.

Wednesday, November 5, 2014


Isn't it strange how we move along through life thinking everything is fine and then we go to the doctor with what seems like a few minor complaints...a lingering cough, shortness of breath even when doing simple things, and feeling a little tired.  We have a few simple tests, which bring on more, not so simple tests, and in our hearts we know this isn't going to turn out well.  I went to my newly appointed pulmonologist on Tues....Dr. M.  He wears bow ties, I love bow ties.  I knew it wasn't good when I saw his eyes.  He told me what the first CT scan said, the one before the fancy, more detailed, CT scan.  I have Idiopathic Pulmonary Fibrosis.  I'm a retired nurse, you know.  I've already been all over the Internet reading all about it.  It's a disease without a cure, at this time.  Until this year there was nothing you could take for it to slow it down.  This year the FDA released two new drugs that slow the deterioration process down, but it doesn't stop it.  Dr M wants a drug that stops do I.
He thinks I've had it for at least a year, which is good really, since I just now started to show symptoms.  It means I might be on a slow track.  He also told me about an 18 month double blind drug study with a new experimental drug.  All the tests etc are free.  There are 163 people in each group .  Two out of three people will get the drug.  The third person will get a placebo.  I have some time to make up my mind if I want to see if I qualify.  The drugs that are on the market now are $30,000 a year.  If I wasn't so scared I would be laughing...who has $30,000 a year to spend on pills? I understand there are some assistance programs though.
I can't make beads anymore....ever.  Dr. M doesn't know if the glass, the silver, the kiln wash etc contributed to this disease or not, but he said he doesn't want any more possible irritants in my lungs. This makes me sad.  There were so many more beads to be made, but I like living more than I like making beads, so the choice wasn't that hard.
Sometime after the first of the year I will sell off my studio.  To all of you who don't wear respirators when you use enamels, please re-think that choice.  I always wore one.  Also if you smoke, that's the leading cause of Pulmonary Fibrosis.  I don't smoke, but this is just an FYI. I just would feel better if I could keep one person from developing this horrible disease.  If you've read all the way to the bottom, thanks.  My plan is to share some of my experiences as I find my way along this new path.

PS I know my blog looks strange.  I cannot get the header to stay where I put it.  I will conquer this computer too :)