SO TRUE

Found this on Facebook.  Love it!!

AND SO IT GOES

Since I wrote last my sweet Sara has been in the hospital twice,with a possible shunt malfunction and an UTI.  Her shunt was repaired, but we are sitting on a time bomb because her shunt is 32 years old and antiquated by today's standards.  Shunt replacement is a surgery with many risks so we will continue on until it just stops working.  It's so hard to see her in pain, or scared, since she has no words to tell us how she feels, or what hurts.  We were in a great hospital with wonderful staff and they took very good care of her, but one of us was at her side constantly.

I saw my pulmonologist this past week.  I won't know if this new drug is slowing the disease process until I have another CT scan and that won't be for 3-4 months.  I waited 2 hours for him and then he was only with me for about 4 min.  Why does this happen...overbooking? Too many people with the same disease and not enough doctors to follow them?  Emergencies?  Who knows, but it isn't good for the mind of someone newly diagnosed...there are so many questions, so many fears.....and no time to ask the questions that haunt me.

I've discovered that having a disease with no cure is very lonely.  No one wants to talk about it.  It's as if we don't discuss it, it isn't there.  Or maybe people think they shouldn't ask me about it because it will make me think about it......like it is ever off my mind.

WORDS OF WISDOM

I saw this on Facebook

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!
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