TIME TO CATCH UP

This is probably a boring post but it is what has consumed me lately.  This past month has revolved around obtaining medication.  I was put on a drug called Esbriet.  It doesn't stop Pulmonary Fibrosis, but it does slow the disease process down.  The first 6 weeks were free, and I guess that was to see if I responded ok to the meds.  This med gives me hope, and for right how there are only two of these drugs out there.
I was notified about a month ago that Caring Voices would pay for the first year and then re-evaluate every year.  Next to be called to into play was my insurance company.  Since I am on Medicare I get my health insurance through them (which I pay for every month)   Medicare denied the first request although there are only two drugs for PF on their formulary and they both cost the same amount.  After a second request from my doctor, who reminded the insurance company that there were only 2 drugs approved to slow down PI, they agreed to pay their share. By the time this all happened, I had been without the drug for almost a week. This scared me.  I was doing nothing positive to slow down this disease.
Now here is the part that just blows me away.  This drug that I take a normal dosage of, 9 pills per day, costs $100,000+ per year!!!!!  If I had to pay my portion, which is 20% per month, I would be liable for $7,800 per month.  Who can afford that?  It is beyond my comprehension.
I am so grateful for Caring Voices for the part they have contributed to my health, and my hope, but I have a real problem with the government trying to tell me that they weren't going to pay for a drug that is one of two drugs available for people like me.  All I want is a fighting chance to try to stay ahead of this disease with no cure.  I know I'm 71 now, but I'm not done living yet.  I have so much I still want to do and see.  I have grandchildren that I want to see grow up.  It would be wonderful not to spend two weeks on the phone trying to get this straightened out.

This is a lesson I learned many years ago, after my sweet Sara was born.  You have to be your own advocate(or in Sara's case, my child's advocate)  No one is going to do it for you. I got the pills today!!  I got them because I called my doctor's office, my case manager at the drug company and my insurance company every single day.  At first it bothered me that my case manager would say she was going to do something and then I would find out the next day that it hadn't been done, so I started calling her 2 times a day.  If nothing else, I AM tenacious and I do not give up.   I will sleep better tonight knowing that little drug is making it's way through my body and hoping it is doing everything is was designed to do, even if it does cost a whole lot of $$$$.  You can't put a price on life in my book.  I treasure every minute.

A HOPEFUL BEGINNING

The pills arrived today.  I hope this is truly a new beginning for my poor lungs.  They won't stop pulmonary fibrosis, but their job is to slow the process down, until a drug that stops the disease comes on the market.  I took my first pill with a Starbucks frappicino...frappicino's are kind of like champagne to me.  Besides I am suppose to have very limited alcohol intake, which is easy, since I  drink one glass of wine a month.

Also today, my night time oxygen arrived in the form of an oxygen concentrator, which is kind of amusing, since I have two concentrators in my studio and they are my oxygen source for making beads.  I wonder every day if making beads is what started all of this.  I always wore a respirator when using enamels, but many of the glasses I use have metals (silver, gold, copper and lead)  I have a ventilation fan that goes to the outside air, but the thought crosses my mind, is the thing that I love killing my lungs?  No one knows for sure what causes Idiopathic Pulmonary Fibrosis.  So is my fear unfounded or real?

Some days I think I should just stop, I'm nothing special as a beadmaker,   Then I see a beautiful bead and that impulse to go to my torch and see what I can create takes over.  It's like a siren song. Right now I'm knitting, crocheting, drawing, and planning a small quilt hanging, but my glass studio still calls my name, over and over again.

What if 10 years down the road, when I am 80, ( and can no longer hold a steady mandrel) I find out that beadmaking is the cause of my disease, but I continued to make beads.  Actually if that is true, then I probably wouldn't make it to 80.  BUT what if I stop now and find out the glass didn't cause it?  

I wonder......are there any other beadmakers out there with this disease?

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.

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.

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.

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.

ANOTHER DAY

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!
https://www.facebook.com/harriet.harrison

I KEEP WAITING TO WAKE UP

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.

LIFE CHANGERS

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 it....so 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 :)

THE INVASION

How can summer be over already?  .....and how can it be six weeks since I wrote anything here?  Well I might as well share the worst news first! THEY'RE BACK!!!!!!!!!  Night before last I was sitting at my torch and I thought I saw something fly by my head, but it was only one time, so I blamed it on an eye floater.  However, last night there was an invasion....actually my DH killed about 6-8 of them but how can a person work when STINK BUGS are practicing their dive bombing skills right over your head??
We went through this last year so Honey Bunny sprayed my studio frequently this summer, he caulked windows and any openings he could find.  He even made a couple of those upside down two liter traps with an LED light in the bottom.  I haven't been in the studio yet to see if we caught any that way last night.   Anyone out there got any suggestions?   Anyone else having problems with them?  Seriously, they are a little tiny bug, there has got to be a way to get rid of them.  Maybe I could make some kind of fireproof netting to wear when I torch. Oh please somebody help me.  I am such a wuss!!