But seriously folks...

When I was but a wee child, I thought married couples did things like host dinner parties, play board games, buy houses, work in their yards and own dogs and cats. And luckily, we've done, and still do, those things. But what I never counted on was that my husband would get such a ruthless disease at such a young age. I thought only old couples had to deal with terminal illnesses. I was wrong.

If you asked me to describe myself, why you would ask me that I don't know, I would say I am a cat loving, tee shirt wearing silly 42 year old woman. I am also a Family Caregiver.

Being a Caregiver is not easy. And honestly, I could be much better at it. I received no formal training, and I don't get paid. But I am proud to be one. I only wish I could do more.

There are times I get very tired. Moments when I feel helpless and hopeless. But really, for the most part, I'm doing better than most people in my position. I've read posts and blogs from other Pulmonary Fibrosis Caregivers and some of them seem, well, lost. They don't have family or friends who can help, and some are just clueless. Look I'm not saying I'm perfect, but I do alright. Plus Lee and I have a terrific support system. Our friends and family have been nothing short of wonderful since Lee got sick. Maybe that's the key, you need a strong support system.

Right now, our lives are in limbo. We aren't sure if we're coming or going. We can't plan anything until Pittsburgh makes a decision. I can't search for a new job until we find out whether we're moving or staying here. We keep telling ourselves only a few more weeks and we'll have an answer, THE answer. Let's hope it's a good one.

Rosalyn Carter (President Jimmy Carter's wife) once said: “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."

What you talkin bout Wallace - Part Deux

So what's this evaluation thing-a-ma-jig you keep referring to? Well, you can't just walk into a hospital & be like "I need new lungs, got any laying around?" The hospital must review the medical records first & then, if they think they can help, they will call to schedule an INTENSIVE one week evaluation. This is done to determine if the patient is a good candidate for surgery.

And these hospitals don't fuck around either. When I say they probe & prod, they do that AND stick tubes down your throat,(an Endoscopy) run instruments up your torso into your heart,(Cardiac catheterization) plus xrays, blood tests & tissue typing, pulmonary function tests, appts with surgeons, financial aid specialists, social workers...I'm surprised we don't meet with the cafeteria & cleaning staff too.

Approximately one week after the evaluation, UPMC will call us with a decision. IF, & that's a big if, they decide he's a good candidate for a transplant, he will be put on a waiting list. We will have to move to Pittsburgh for an undisclosed amount of time as according to UPMC, there is a shortage of donors.

Move to Pittsburgh!? Yep, you read that right. We could be gone 2 months or 6 or 9. Just depends on how quickly a pair of lungs can be obtained. It's actually an overwhelming prospect. I mean the amount of money we'll have to spend. No wait, we'll have to find the money first THEN spend it. Once we meet with the insurance/financial specialist next week, we'll have a better idea of how much money out of pocket we'll need. Yep, insurance won't cover it all. Shocking, right? I'll save that rant for another day.

Beam me up Scotty

Did you know that James Doohan, Scotty form the original Star Trek, had Pulmonary Fibrosis? Other well known PF patients....Marlon Brando, Evil Knieval and Robert Goulet. Sadly, all of them have passed away. But one famous face is still alive and kickin', Jerry Lewis. Here's the thing about Jerry, with all the work he's done for that telethon, he has yet to use his celebrity status to raise awareness for PF. Thanks Jerry. By the way, you're not even that funny.

What you talkin bout Wallace?

Pulmonary Fibrosis. A lung disease that not many people have heard of. I hadn't until Lee was diagnosed 3 years ago. So here I am to do my small part in educating those we know.

"Pulmonary Fibrosis hinders a person's ability to take in oxygen. It causes shortness of breath and is usually associated with a persistent dry cough. The disease progresses over time, leading to an increase in lung scarring and a worsening of symptoms. Unfortunately, Pulmonary Fibrosis is ultimately disabling and fatal."

"As the condition progresses and the damage to the lungs become more severe, breathlessness may occur with minor physical activity such as showering, getting dressed. Speaking on the phone and eating becomes more difficult and sometimes nearly impossible."

"IPF has no cure yet. Many people live only about 3 to 5 years after diagnosis."

For details about PF, please visit one of the websites listed below. All info obtained from these sites.
http://www.coalitionforpf.org
http://www.pulmonaryfibrosis.org/Symptoms
http://www.nhlbi.nih.gov/health/dci/Diseases/ipf/ipf_whatis.html

Back in time

Yesterday, I gave you a high level overview. Today, I thought I would invite you to join me in my time machine and take you back to the beginning.
And by the way, my time machine is a Delorean.

When Lee was diagnosed with Pulmonary Fibrosis at Duke in early 2008, it was a shock. Finding out that someone you love will die within 3 - 5 years of getting diagnosed if they don't get a lung transplant is devastating. How the F was I going to deal with this? Well, I didn't. I fell apart. Guess you could say I had one of those nervous breakdowns.
But then the anti depressants arrived. And I slowly made my way back to where I needed to be. I'm not afraid or ashamed to admit I take antidepressants. No one should be. Sometimes, we need a little help. And that's ok.
In addition to anti depressants is a healthy dose of laughter. I love to laugh. Always have. And I love to make people laugh. I don't always succeed at making people laugh, but when I do, it's the best feeling in the world. Yes, I know, it's cheesy to say...that laughter is the best medicine. But it's true. Besides, I'm known for being somewhat cheesy. Unicorns and glitter anyone?
As for Lee...he handled the news with poise. He's been admirably strong throughout it all. He's continued to be hopeful. Even when he's not feeling his best, he still tries. Tries to visit with friends and family, tries to play music, tries to be upbeat. And he's always eager to travel to see his favorite songstress, Bernadette Peters, no matter how difficult the journey might be. That's not to say he doesn't feel nervous or upset or worried or sad sometimes. I'd be concerned if he didn't!

This year has been exceptionally difficult for us. Lee is now on Oxygen 24/7, he's already been through one evaluation in March and now another next week. And to top it all off, I lost my job last month.
( through no fault of my own, the entire center is closing )


So we're due for some good news. Keep those positive thoughts and kind words coming. We do appreciate them.

My first blog...ever

Blogging. A word I never used until yesterday. But a good friend suggested I try it. Use your power for good I thought. Ok I can do that. Here's the thing. I am no writer. Hell, I don't even like to read. But I'm gonna give it the old college try. Well, on second thought, I'd better try harder than that.

Let's begin with the facts. What exactly has brought Lee and I to this chapter in our lives...
~ Lee was diagnosed with Pulmonary Fibrosis in March 2008 at Duke Hospital.
~ Pulmonary Fibrosis is a terminal disease with lung transplantation as the only treatment.
~ Lee undergoes a week long lung transplant evaluation at Duke in March 2009. Was denied due to Esophageal Dismotility.
~ In March 2011, traveled to The Cleveland Clinic for a second evaluation. Sadly, was denied again. Considered "high risk" because of the esophagus issue.

So here we are. The last week in July 2011. About to embark on our final attempt at a lung transplant evaluation. This time at The University of Pittsburgh Medical Center. We have been told that Pittsburgh is our last resort.

We drive to Pittsburgh this coming Sunday. My goal is to provide daily updates on this blog. And I'll include photos and videos if possible. Please feel free to ask questions or post
comments.