Saturday, April 10, 2010

No Money for Lung Transplants

PHOENIX -- Geneva Prendergast can't wait to hit the slopes up north for a snowboarding lesson.

That's something the 26-year-old Mesa woman never could've done prior to undergoing a double lung transplant last month.

"I couldn't breathe, you know," Prendergast said. "And, taking a deep breath -- I couldn't do that."

Prendergast suffers from cystic fibrosis.

Prior to her surgery at Saint Joseph's Hospital, Prendergast's lungs were less than 20 percent functioning.

Now, her lungs function at more than 100 percent.

Prendergast says her new lungs have given her a new life -- one her fiance, Marc Badalucco, is anxious to share with her.

"We're gonna get married," he said. "We want to travel. It's just everything and anything we've wanted to do -- we're making a list and checking it off."

AHCCCS, Arizona's Medicaid program, paid for Prendergast's double lung transplant -- which can cost anywhere from $250,000 to $650,000.

Because she was so sick, prior to surgery, she couldn't work.

And, because she has a pre-existing condition, private insurance companies wouldn't cover her.

Soon, those who are in the same boat Prendergast is in, may not be afforded a "second chance" at life.

In mid-march, the state legislature voted to eliminate AHCCCS funding for lung transplants and some heart and liver transplants.

Prendergast's mother, Barb Garday, says she's worried for those who may be left out.

"It's almost like, if you can't afford private insurance, you're life isn't worth as much as those who can," said Garday. "What will they do? I don't know what we would've done."

The elimination of funding for some transplants is part of an larger plan for cuts to AHCCCS -- which will likely go into effect in October.

It's something many legislators say they didn't want to have to do.

But, right now, with limited funds, they don't have a choice.

Original article at

Friday, April 9, 2010

My First Ever CF Blog-What is Cystic Fibrosis?

Ever had pneumonia? That’s generally what my lungs feel like. You know how your lungs feel the first couple of weeks when you get back to exercising? My lungs feel like that whenever I walk to fast. Ever get that cough that just won’t seem to quit? I cough so much that I don’t even notice it anymore. Upset stomach? Avoiding an upset stomach on a daily basis almost seems impossible.

Here's the problem with CF, it's not a lung disease. If it only affected the lungs it would be a lot easier. CF is a disease of the cells. They don't work properly. I'll spare you with the science talk and just put it simply. The cells in my body can't regulate a proper balance of water and salt. It's way deeper than that, but that will give you the gist of it. The problem with the cells not doing there job is that it throws off a good portion of the rest of the body. You name the organ, and someway somehow, it is affected by CF. I've had multiple surgeries on my intestines and sinuses, as well as problems with my skin, kidneys, liver, and spleen. For me though, those things aren't the main problem.

The main problem that I have is a bulid up of thick and sticky mucus in my lungs. When there is a ton of mucus in there it makes it harder to breathe not only because your airways are full of junk, but because they are also irritated and swell up. Mucus is also a great place for an infection to be born and hide out. Infections are the main reason I am hospitalized. How do I know that I have something going on? My mucus becomes green, sometimes very dark green, and almost to the point of a brown (especially if I've been coughing up blood, which I'll get into at a later time). I also become very tired, short of breath, and shutter at the site of food. It can all happen very fast too. Once it starts it's really hard to stop. The key is that darn mucus. Generally speaking; No mucus, no problem.

Why did I tell you all of that? Surely not to play the victim or even worse have you feel sorry for me, but to put CF into real life. Let me be real clear: I love my life. Wouldn’t change it. I have learned to “deal” with the consequences of this disease over the last 29 years. I never question “why?” I know why. CF has shaped my life into who I am today. Has there been negatives? Of course! But way more blessings have come my way by having this disease.

One thing to remember is that CF affects thousands of different people in thousands of different ways. I can only tell you my story. I hope to write at least one personal story or thought or opinion a week so you can get to know me better. You can follow my entire journey on

Thursday, April 8, 2010

Drug of Choice

I decided that not only would this be a Thankful Thursday post but it would be a Thirsty Thursday post as well. I'd like to let you guys in on one of my vices. There is something that I do almost everyday, and usually twice a day, that is definitely bordering on addiction. If I don't do it, I crave it, and if I crave it, I usually go out of my way to get it. There's been times in my life that I have gone without, but it would generally consume at least part of my day thinking about getting my hands on it. I can't put my finger on the day that it became an addiction, but I'm pretty sure it was a problem as early as my freshman year of high school. By the time I was a senior, I'm afraid to admit that I was a full-fledged addict. I have yet to break the habit and I feel that as it gets hotter outside, my craving will only get worse. So what's this monster lurking in the shadows?

Any SPORTS DRINK that I can get my hands on.

As many of you know, there's plenty of options out there when it comes to this drug. Right now however, I'm pretty hooked on Powerade (and no, bloggy police, I am in no way affiliated or paid by this product). I think that the reason I choose Powerade right now over any of the others is tw0-fold; cost and taste. I can ALWAYS find Powerades for 88 cents a piece at my local grocer. I usually by at least 10 at a time and they only last for about a week. Favorite flavor? I'm going to have to go with Strawberry Lemonade....ahhh, I actually just took 3 large chugs and it tastes oh so good!!

I know this was a pretty random blog, but I just couldn't hide my addiction any longer. You understand right?

Wednesday, April 7, 2010

National Donate Life Month

APRIL IS HERE. Can you believe that the year has flown by so quickly? Days pass, weeks blur together and next thing you know, here we are. But we don’t want April fly by without taking a moment to stop and make a difference.

April is National Donate Life Month. Organ and tissue donation is a cause that I believe in and support. CysticLife has teamed up with The Power of Two this month, to shed light on organ and tissue donation and to raise money for The Power of Two Movie, which works to raise awareness about organ and tissue donation globally.

As we all know, organ and tissue transplants play a role in many Cyster’s and Fibro’s lives. Many CFers consider transplant, undergo transplant, and live post-transplant. Therefore, it is the job of the community to discuss, participate and support the cause. This month we are asking the CF community to consider two things:

1. If you have not already, please consider committing to become an organ and tissue donor:

2. Please consider making a TAX-DEDUCTIBLE financial contribution to THE POWER OF TWO in honor of those around the world who are waiting for organ & tissue transplants. GO TO:

A message from The Power of Two:

“As of today, THE POWER OF TWO has over 1,959 fans on Facebook!

(If you haven't already become a fan, please join us at

If every fan donated $10 this month, we would raise over $19,000 -- which would provide a major boost for our production of THE POWER OF TWO documentary film as we continue filming through Spring 2010!

Even a SMALL donation of $10 will make a HUGE impact for our project. We can literally move a mountain of media and movie making resources for every $1,000 raised -- if you donate today, you can help us do just that!

PLEASE GIVE GENEROUSLY, and help us finish the SIGNATURE FILM on organ donation in time for an early 2011 premiere.

THE POWER OF TWO is proud to be fiscally sponsored by the San Francisco Film Society. Make your secure -- and TAX-DEDUCTIBLE -- donation today by clicking on the black and white SFFS logo at:

Thank you very much!”

To learn more about The Power of Two Movie visit:

Tuesday, April 6, 2010

Top Ten Things I Missed About Jezzabel

I got Jezzabel back this weekend after she had been staying with my mom during all of Josh and Chrissy's wedding stuff. I wasn't around much and the last thing I wanted to do was leave her home alone all day. My mom, as she does often when I go into the hospital or out of town, took her off of my hands for a while. It doesn't take long for me to start missing her, but these would be the top ten things I miss most:

10. Not having my morning walk partner

9. She's ALWAYS happy to see me when I come home

8. It's super cute when I don't know where she is and then discover her out cold on her doggy bed

7. The way she stretches and yawns every morning is hilarious

6. When I'm at Mandi's house I'll take her down to the wash and let her run loose and explore

5. The way she shimmies and rolls around on the ground to scratch her back

4. When she puts her head in between her paws and stares at me with her big brown eyes

3. Hearing and seeing her dream after she falls asleep (she's always chasing something and barking at it)

2. The way she stands at the door so patiently when she wants to go outside

1. Snuggling with her (although she doesn't beat Mandi)

Monday, April 5, 2010

A Wedding to Remember

Welp, it's one week post wedding (Josh and Chrissy's that is) and I've finally fully recovered from all of the family and friends being in town. Last week my post was super weak sauce because the wedding was on Sunday, and truthfully, I totally forgot the blog (I know I know, BOOO, HISSSSSSS). But this week I wanted to take a moment to tell you all about the wonderful wedding and share some pictures.

The wedding hoopla started on Friday with a bunch of family and friends over for a casual evening at my parents house. Then on Saturday morning was the rehearsal and rehearsal brunch, followed by an evening get-together with all of the family and out of town guests at my folks' house. It was great getting to really spend time with all of the guests before the craziness of the wedding day arrived. We just hung out, caught up on each other's lives and ate some yummy food my mom prepared.

Sunday was the big day. It started with hair and makeup for the girls and laying by the pool for the guys. You know how that is; the women somehow can take all day to get ready, and the men throw on their tuxes 30 minutes before go time. All day, Chrissy was cool as a cucumber. She seemed relaxed. I was incredibly impressed by her. She somehow just sat back and let the day roll; something I made note of and am going to try to do on my own wedding day (but probably a lot more unsuccessfully!!). The ceremony started at 5:30 and went on just as scheduled. I was a mess. I attempted to keep it all together, but somehow lost it at every turn. I made eye contact with Josh as I walked down the isle to take my place, lost it. I saw Josh's face when he first saw Chrissy, lost it. I watched my parents get choked up while they said their vows, lost it. Saw the ring on Josh's finger for the first time, REALLY lost it. Needless to say, I needed tissues built into my bouquet. For those of you who don't know, my family is VERY close. My brother and I are the only two kids, and I've dreaded "losing him" to another girl. But I must say, it was all made easy as we truly love Chrissy and are excited to have her become a member of Team Melin (yes, I said Team Melin...we have a family cheer and everything. But that's another story for another time). The reception was just as wonderful as the ceremony. Full of good food, dancing and lots of good laughs.

All in all, it was a wonderful night and I was SO thrilled for them, both for a wonderful wedding and for finally getting to be man and wife!! I could go on forever, but I tried to keep it "short". Here are some pictures so you all can see how wonderful it all was. ENJOY!!

Sunday, April 4, 2010

Piper Is Stealing the Show!!!

**I wanted to re-post this blog in honor of my good friend Piper who is still waiting to receive a lung transplant. In the past week, she has had two false alarms yet waits patiently with a smile on her face. Stay strong cyster!!**

I realize that I spot-lighted (is that a word?) Piper's blog last Sunday, but she wrote another Pulitzer prize winning piece this week that couldn't be passed up. I'll just get to her post and spare you any more words from me, it's that good:

Notice of Separation

Dear Cystic Fibrosis:

It's hard to believe that it was just a little over 28 years ago when you and I took our vows together. Of course, I'd be lying if I said I remember any part of the ceremony, but I imagine I looked small and beautiful (if a little sick and underweight) in my infant hospital gown. You, I'm sure, looked much the same as ever, hidden as you were in my tiny little genes -- 28 years and you haven't changed a bit, though I wonder if that's much of a compliment for a couple of fixed mutations. Either way: you were there and I was there, and at 6 weeks old I took a vow to live with you as best as I could, through all your wild mood swings and reckless flare-ups, despite your unpredictable nature and frankly very bad temper (you could totally use some anger management classes, just fyi); for better or for worse, in sickness and in health.

I guess I didn't know at that time that you'd been courting me in secret for quite some time -- 9 months and 6 weeks to be exact about it all. We were young then, and even the experienced adults around us couldn't recognize the signs of our burgeoning relationship. Isn't that always how it goes though? You don't know how deep you're in it until your hands and feet are stuck in the tar and no amount of prying or tearing or punching will tear you loose -- you're just stuck with that tar baby and that's the end of it. And then I guess we're all just left to do the only thing we ever know HOW to do, which is to make a life out of it all.

And live we did! Hey, CF, we had some good times, right? More good than bad, actually, when you care to tally it all up. I mean sure, you tend to get all worked up for no apparent reason sometimes, and you do have a way of trying to make our lives all about you (like that little attention-hogging infection back in 2007? Um, yeah, SO uncalled for!), but by and large you and I have made a life together that far exceeded anyone's expectations. We've traveled, gone to school, pursued random dreams, had relationships, lost relationships, fought battles, and done pretty much everything we've set out to do over the years, to be perfectly honest. I wouldn't say you were always my favorite companion on that road, but I have to give credit where credit is due: you definitely don't have any problem with commitment.

Nope, CF, I don't hate you, honestly. I need to say that, and I'm willing to put it in writing. Granted, you might have trouble believing me, and probably for good reason. I admit I wouldn't be too hot to trust someone who spent hours plotting ways to raise money for a foundation working to wipe me off the face of the earth. It probably doesn't leave you with the best taste in your mouth, but then again, you're directly responsible for all that goo I coughed up this morning, and that didn't taste too good either. And anyway it's all true: I don't hate you, because you've pushed me to be more than I probably could have been without you, because you've brought my family closer together and forced us to realize what we mean to each other, because you've given me SUCH cool slang language (cystic, cyster, fibro), because you gave me countless funny hospital stories (no, I do not have fibrocystic disease of the breasts, thanks very much) and taught me more medical words than most residents know, because you've made me part of a fabulous community of people, and because you are, for all your flaws, a part of me now. You are literally all I know, and for that I find it difficult to let go.

Let go. Um yeah, kind of. See, the point is, CF, that while you haven't changed too much over these past 28 years, I have. I've lived and I've laughed and I've coughed and I've read some really good novels (and, let's face it, a whole lot of NOT so good novels) and, well, I've come to a kind of startling conclusion: I would be better off without you.

No, wait, before you freak out, I don't mean ALL of you (although if I could have that option I have to say I think I'd take it), but I do mean the biggest part of you. The part that has taken up residence in my lungs and insists on throwing raucous parties every few weeks or so, despite the fact that I keep telling you it's just not compatible with my lifestyle. Yep, that part. I'm sorry, but it, and you, has just got to go.

So I'm making plans to get a separation, and I hope it doesn't come as too much of a shock that I'm pretty far along in the process. I'd offer to find you good representation, but to be honest the judgment has already come down. You're out, I'm in, and hopefully some new lungs will help me move on with my life in a way I never could when you were with me. I'm sorry (sort of), but this is just the way things have to be.

If it makes you feel any better, I know I'll always bear with me the scars of our relationship: of all the times we fought and struggled and everything you taught me about myself. Physical scars, sure, but more than that also. And of course I know I won't be rid of you completely (though you can be sure I'm not going to give up trying to knock you out altogether -- no hard feelings, surely), but I'm hopeful that the part of you that remains will be less cumbersome and attention-hungry, and frankly just less annoying.

I know things might not be perfect when you're (sort of) gone. I accept that, and I'm okay with it. Right now, all I know is it's time for you and me to (kind of) part ways. So here's my official notice -- consider yourself served:

Listed for Transplant
NY Columbia Presbyterian Medical Center
August, 2009

Yours always (or at least until something better comes along),

Seriously? That was brilliant. She is such an amazing writer and a creative thinker to boot! Please please please please please go by her blog and give her some love! I want her to continue writing the type of pieces that just make you shake your head and go, "wow, that was great".