Tag Archives: Help Jan Fight

01Sep/15

Oxygen

This update is difficult to write, as we’d hoped this would still be a year or down the road. A few weeks ago Mom failed a six-minute walk test which officially qualified her for rescue oxygen. Unfortunately shortly thereafter her breathing became worse and she started needing the oxygen more frequently until she was using it all the time. She went to the emergency room last Tuesday and was admitted. I waited to post this because at first the doctors thought maybe she had a secondary infection and they would be able to ween her back off the oxygen. But now they seem to all agree that she just had a quick down turn.

So, when mom is released from the hospital in a few days they will not be weening her off. Her new normal is oxygen 24/7. As usual, she’s handling it with more grace than any of the rest of us.

Growing up Mom always told us that everything in life happens for a reason. It’s really hard to stand by that belief when your mom is dying. The other night, with her best friend sitting at the end of her hospital bed, she told us that she wasn’t going out without a fight and that she still had things to do in this world.

Earlier in the day an NP covering for her cardiologist came back to see mom again to tell her something because, “she felt compelled to.” The NP is also a medical researcher who primarily studies lung diseases like cancer and COPD. She’s currently working on some kind of magnet hydrotherapy. I don’t really understand how it works because I’m not a doctor or scientist, but it has something to do with repairing cell damage. They’re not quite to clinical trial stage yet, but it can’t hurt mom to try it and realistically, we don’t have anything left to lose.

The equipment for the treatment will cost around $1000.00. And, because Mom will now be on oxygen all the time, she needs an oxygen tubing reel that will be $300-400. It won’t completely wipe out her funds, but will only leave a few hundred dollars her account, while her medical bills and needs will only grow as her disease progresses.

08Apr/15

Pneumonia

If you’ve previously donated to the GoFundMe campaign then you probably already know Mom is back in the hospital. She’s had a pretty good stretch; it’s been over a year since her last hospitalization.

It’s hard to write about Mom’s illness without painting it with my own emotions. As a child of someone with a potentially terminal illness, one of my biggest fears has been Dad calling and me missing it because I was asleep, or my phone was on silent, or any of a thousand other reasons I could probably come up with. And that’s what happened this time. It sucks.

You never forget that she’s sick but it’s easy, when she’s been relatively stable, to let your guard down…for lack of a better way to phrase it. But, you can’t do that with autoimmune disease, and you can’t do that with IPF. I saw her Sunday on Easter and now she’s in the hospital with pneumonia; it happens that quickly.

Mom probably won’t be thrilled with the details I’m about to share, but I think she’ll forgive me in the interest of spreading awareness. IPF is a disease that receives very little coverage, and it seems like even friends and family members of people with IPF don’t always understand how horribly crippling this disease really is.

I know Mom would agree that anything we can do to raise awareness is worth it.

So here goes: Mom passed out last night. After arguing with Dad (because she’s hard-headed; it runs in the family) because she never wants to go to the ER, she was packing a bag to take to the hospital. After a few minutes she still hadn’t come out of the bathroom. When Dad knocked she didn’t answer him. He found her passed out leaning over the sink, likely because she wasn’t getting enough oxygen.

She was admitted to the hospital from the ER with pneumonia. I don’t have much of an update as far as her current condition, but I’ll post updates here or on her GoFundMe as I have them.

 

20Oct/14

The Cost of Dying

I had planned to publish the final installation of No More Cliff Diving (part two, part three) last week, but in light of the recent announcement of the FDA’s approval of Esbriet and Ofev I wanted to devote an entry to that. And, I needed a few days to stew contemplate.

On October 15, 2014 the FDA announced it was approving the use of Esbriet/ pirfenidone and Ofev/ nintedanib for the treatment of Idiopathic Pulmonary Fibrosis in the United States. Don’t get me wrong, I applaud the FDA for finally approving not one, but two drugs for the treatment of this devastating and terminal illness. However, I can’t help but think about all the patients for whom this news is too little too late. About all the patients that died waiting for something like pirfenidone in the U.S.

While I publicly retweeted the news from Pulmonary Fibrosis Foundation’s twitter feed, privately I scoffed at their generous use of “prompt” in relation to how long the approval took.

According to a press release on Drugs.com, Intermune first submitted a New Drug Application to the FDA on November 4, 2009. I completely understand the need for due diligence, particularly in respect to prescription drugs, but pirfenindone is not a new drug.

It has been in use since 2008 in Japan under the trade name Pirespa, and in India as Pirfenex, since 2010.  I could go on.

According to the Coalition for Pulmonary Fibrosis, approximately 40,000 people die from pulmonary fibrosis every year. So… that’s about 160,000 people dead in the four complete years since the initial drug application to the FDA. Sure, I’m biased; I’m emotionally invested. But I doubt the families of those 160,000 people (remember I’m not counting 2009 or 2014 so the estimate is on the low side)  think the FDA’s approval was all that prompt either.

An article in the NY Times published the same day as the approval stated Esbriet would cost roughly $94,000 a year.

“Roche said the wholesale price of Esbriet would be about $7,800 a month, or about $94,000 a year — two to three times what the drug sells for in Canada and Europe.”

And that’s down from one account I read (I’ll link to it, if I can find it again) that estimated the cost to be closer to $100,000. Either way the exorbitant cost will likely prevent patients, many of whom have been disabled by this disease, from receiving the drugs that can slow the progression of their disease.

The Pulmonary Fibrosis Foundation has alluded to a possible subsidy in some of their tweets, but I haven’t been able to find any concrete information on it.