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Tuesday, December 30, 2014

NEWS I DID WANT TO HEAR

Since I couldn't be in the drug trial I've been waiting to see if I could get one of the two  drugs available that slow the disease process down.  I was told it was $30,000 a year.  Assistance is available to pay for the drug so I was given the paperwork to apply for help.  Today the drug company called to tell me that the first 15 days of the drug would arrive Friday.  I asked the cost and was told there was none!!!  They told me that the next amount I would get after the 15 days would be for 30 days from now on.  I again asked the price......NOTHING!!  What a relief!  I am very grateful.

Here is a picture of me making beads.  I got approval from the doctor to continue making them using a respirator at all times....not comfortable, and impossible to make hollow beads with a hollow mandrel, but I'm happy.


Since I'm showing pictures here is one of my son with his kids and me with my oldest granddaughter.



Wednesday, December 17, 2014

FUNNY

On a lighter note, I saw this on Facebook today.  Cracked me up :)  Perfect and so true, and I feel so much better when something makes me laugh.




Tuesday, December 16, 2014

NEWS I DIDN'T WANT TO HEAR

Today I found out that I don’t qualify for the drug trial for the new drug for Pulmonary Fibrosis.  The reason is frustrating, both to me and my doctor.  I had two CT scans that determined that I had the disease.  The first one was a regular CT and the second one was a high resolution scan which shows a more detailed look at the lungs.  I had to have a third high resolution scan by the lab who is evaluating everyone in the study.  Three people evaluated the scan.  One person said my scan showed definite Pul. Fibrosis.  The other two said it was not for sure.  Now this would be good news were it not for my pulmonologist and my brother in law (also a pulmonologist) who both say IPF (idiopathic pulmonary fibrosis) is present in my lungs.  They see it even in the third CT scan.  My doctor tried to appeal the decision, but it was not allowed.  The only way he can prove I have it is by doing a lung biopsy, which has it’s own risks.  Dr M does not want to expose me to those risks. He also said there is no guarantee that I would get the drug if I was in the study.

I am disappointed.  i really wanted to be a part of this study.  After talking to my brother in law, he and Dr. M.  decided that for now I will be given a weekly injection of the drug already on the market, which slows the disease process down.  I will have another CT scan in about two months.  If my condition has worsened I would then be a candidate for the new experimental drug study.  However there still would be no promise that I would get the drug instead of the placebo. 

I did learn I have to start sleeping with oxygen because my oxygen level goes too low while I am sleeping.  All of the symptoms plus signs of scaring on my lungs, and two people say I don’t have enough evidence of IPF so they keep me out of the study.  I have to believe there is a reason.

Monday, December 8, 2014

RAMBLINGS

So I've had all the tests and interviews for the drug study, now I just have to get through the waiting part to see if I get in.  Two doctors, who are not pulmonologists, have told me that IPF patients can live a long time, which is encouraging.  A third doctor gave me no encouragement at all.  He was distant and somewhat aloof....I wish I knew why. Even if this disease is a killer, don't you think a doctor who takes care of me in another area should at least try to be positive and give me some hope?  Everyone needs hope, you take away that and what's left......just despair, and how does that help anything?
I feel good most days and that is WONDERFUL!
Haven't made any beads yet, but first I have to clean out my studio.  I never cleaned up since my show which was in Nov. It's looking pretty grungy.
Right now I am knitting.  I love knitting.  I'm working on  pair of socks and I just finished a hat for my youngest grandson.
Don't have my tree up yet, but I am halfway through shopping.  I have a love hate relationship with Christmas.  I love the decorations, the family time, the sales, and watching the kids open presents.  However, I don't like the crowds, the traffic jams, looking for a parking place, and waiting in long lines to pay for things.
I feel sad watching my grand children's time split between spending time with their dad and mom over the holidays.  I loved it when we were altogether and the kids didn't have a care in the world.  It's hard watching everyone adjust to a new normal.
Overall, I think the kids do fairly well, but I always think about them when they switch houses.  They don't have a home.  They have two homes that they split their time in, but one is dad's home and one is mom's.  I think this really messes with identity, just my opinion. Actually, I'm having a hard time staying on any one topic today. ( Anyone notice, besides me) so......that is all.