Some new wounds to show for it...

            Well, just a brief update..Im home! My pain is pretty minimal too, finally. I'm on a liquid diet for a week, or until I see the surgeon again to give the o.k. to be able to eat solid again. I'm so happy to be home though! I really don't belong in the hospital anymore dang-it! I'm to well..lol! Here are some recent battle wounds.  Count the scars. ha ha.

Back in the hole..lol

             Hey all! Greetings from the hospital! Yup, I'm back in here and they think they found the underlying issue as to why my lung function keeps dropping...or whats causing the rejection.  Stupid acid reflux and re-gurge. So, the plan is to have surgery on Monday, Nissen surgery, to tighten my esophagus so that nothing can come up into my new lungs.  It's kinda a big surgery, but it's being done laproscopically thank god! No big incisions..not that it would really matter though, whats a couple more compared to the one across my chest! ha ha! But, there are some crappy side effects..I guess after this procedure, it's going to be possible that I wont ever be able to vomit again. Which sounds good to some peeps, but it's not really that sweet. Kinda a scary thing, but weighing my options right now, it's better then losing these awesome breathers, so..I guess it'll have to be.  
        The good news is that my lung functions is still about 100%, and my sats are like 99, so there really isn't any serious damage done yet. Hopefully this will fix the problem completely and my lung function can come back after this.  I'm counting on it. There may be some permanent damage that is irreversible, but I'm hoping for them to come back up.

Bumps in the road...

      Well, I just got out of the hospital a couple of days ago and I must say..I don't miss that one bit! lol I can't believe I spent most of my time there pre-transplant. I was pretty miserable. I had to go in because I was having some major flu-like symptoms that just seemed to be getting worse and I was pretty short of breath. That scared me to have to be put on oxygen again..it brought back so many memories that I didn't want to drudge up again! It's very scary how fast I got sick. I was up in the morning and about an hour or two later I was throwing up and I couldn't breathe. My O2 sats had dropped to 85 on room air, and I couldn't even walk very far without losing my breathe completely. It was like I hadn't even had a transplant at all! I know that I had (or have) some sort of virus but they have no idea what it is. They were testing me for CMV, which is a blood virus, but it came back negative. So I'm hoping that they can find out some sort of answers for me. My breathing is much better but I am just so tired for some reason and I haven't been able to do much around the house that I need to get done.

        In the hospital my O2 sats kept dropping in the middle of the night into the 80's but as far as I know that has stopped. I just need to start getting some energy back. They also said that I have some A2 rejection which is still pretty mild, and they pumped me full of steroids for that. I guess I could be tired because of the rejection..but it doesn't seem likely to me. I think I've got something. I've got clinic tomorrow to see how my PFT's are doing..hopefully they are gonna go up so that I know the steroids worked. Here's to NO MORE REJECTION! Wish me luck <3
      

A Breath of Life...

                 I'm so sorry I haven't updated for awhile..I've been busy getting hitched and then we went to Aruba on our honeymoon! Things are finally getting back to normal, so I have a little extra time on my hands again.  We had a HUGE couple weeks..Marc and I met with my lung donor's parents last Sunday. I couldn't believe what amazing people there are in this world! They shared so many amazing things with us about their son, Robbie, who was just 18 when he passed away this March. What a remarkable kid! They told us how smart he was..he had plans to go to Harvard in the fall, he played guitar, ran marathons and played La cross. Such an amazing athlete! These lungs are even more special than I had ever imagined and I can't believe how blessed I am to have been able to meet this family. What an impact he had on people's lives while he was here..and I would have loved to have been able to know him at one time.  Sunday was a very emotional day..we met them for coffee and It took everything I had not to cry. His mom cried a lot..and I felt so terrible..my heart just aches for them. I'm so glad they wanted to meet with me though, cuz I know that they didn't have to have anything to do with us.
           We were invited to "The breath of Life" gala this Sat, and their family was accepting the Jordan Sterling award for the amazing gift he gave to me..a cystic fibrosis patient.  What an amazing night, I will never ever forget it! I cried a lot...I couldn't hold it in! His dad got up and made such a wonderfully heart-felt speech and in it he mentioned us and how much we meant to their family. I guess we will forever be linked to their family by these amazing lungs! I will be eternally grateful to them, and I'll prob never be able to express how much these last two weeks have meant to me..getting to know them. They told us that Robbie's favorite color was pink, so Marc and I wore pink to the gala.  They loooved it!  His sister was also wearing pink and she looked absolutely adorable!  I have some pics that we took throughout the night, so I will post one.  What an awesome night! It makes me want to encourage as many as I can to become an organ donor! Robbie donated almost everything and saved so many lives, including mine. It's amazing how it brings people together in a way you would have never thought..and it helped them with their grieving process so much to see such wonderful things happening because of their son.  RIP Robbie Mayasich. I will be eternally grateful to you.

Pics from the hospital

Stable sternum

             The past couple months my sternum has been giving me grief, and I'm not sure why. The plate on it has been moving around (because I can feel it) and sometimes when I take a deep breath it makes a "clicking" sound. No one else can hear it though, I'm the only one who has heard it. Am I going crazy or something??!! It's also been kind of painful at times..like when I take a deep breath or just sitting at rest it will start shooting pains through my chest.  So I expressed my concern to my docs..and they called my surgeon. He came in and basically pushed on it, (which hurt like hell!) and made me cough a couple times to see if it would move for him. Of course not! Why would it be doing any of the things it's been doing for the past month at the moment when it really mattered! LOL Well, he concluded that it "felt" stable, and that it wasn't moving for him. But he suggested, because of the symptoms I was describing, to investigate further by getting some good close-up pics of my sternum by getting a cat-scan.
          Well, I got the cat-scan done yesterday and got the results this morning. NOTHING! They said there is absolutely nothing wrong, and that everything is completely stable..which is good news and I can't complain but I feel like I'm going crazy! I could have sworn that something was def wrong there. But I guess I was wrong. I just hope they read the pictures correctly.  They also said that my sternum had completely healed, and it looked very well. So I guess if worse comes to worse I can always have that plate removed if it keeps giving me problems because technically I don't really need it anymore. It's not holding anything in place anymore.
         I still wonder where the pain is coming from though. I guess when there is something foreign like that in your body your bones naturally grow away from it. So maybe some of that pain is my sternum pulling from the plate as it heals. That's the only conclusion I can come up with! All I know is it hurts like hell sometimes! It feels like really sharp shooting pains radiating through your chest.:(  Not fun stuff, but Oh well! There is always going to be side-effects that aren't pleasant I guess. Comes with the territory! Best to just suck it up and move on!


That's it for now:) <3

Pic of me before transplant LOL

My Rebirth...:)

                 So, shortly after my transplant I had a lot of the news stations calling me for interviews and newspapers wanting to do articles about my "rebirth." I'm not sure why but every one of the local stations contacted me to do a story, but I decided to only go with channel 15. I would post the video but I don't have it anymore.;(  The Arizona Republic also did a story on my transplant...which was kinda cool! I felt a little like a celebrity! LOL I think it was just because it was kinda a "feel-good" story for Easter, and I think that's why they were so interested..because it was kind of like another "Rebirth" article. But I have one of the articles the hospital did on me so I'll post that. I will also post the one that was in the Arizona Republic, although they are both kind of about the same thing.  In regards to both of these articles, they DID end up cutting funds for lung transplants for people over the age of 21. It's such a horrible thing, and my heart goes out to those who wont get their life-saving transplants. Another reason for me to count my lucky stars...

March 31, 2010
Young Valley Woman to Celebrate Easter
with a New Set of Lungs and a New Life
A 26-year-old Valley woman is celebrating a “rebirth” this Easter after receiving a double lung
transplant at St. Joseph’s Hospital and Medical Center. Before her lung transplant, Geneva
Prendergast was on oxygen and her lungs were functioning at only 20 percent. She was declining
rapidly, could no longer work and was worried she might never enjoy the wedding she had planned.
Now, she is breathing on her own, her lungs are functioning at 108 percent and she is looking
forward to marrying her fiancé, Marc Badalucco.
Prendergast has lived with cystic fibrosis, a genetic lung disease, since birth and the disease significantly
grew worse as she grew older. She had never taken a normal breath until after her transplant.
“I was sick my entire life,” says Prendergast. “Since my lung transplant, my whole world has changed
dramatically. I can take deep breaths and do anything I want. I have never felt so good. I feel reborn.”
Before her lung transplant, Prendergast and Badalucco were planning their wedding that was scheduled to
take place at the end of March. When a donor became available, they had to postpone the wedding but
were thrilled that Prendergast would finally get a set of new lungs and a second chance at life.
“The lung transplant is one of the greatest gifts I could ever receive,” says Prendergast. “Marc and I will be
able to enjoy a long life together. We hope to travel, which is something I wouldn’t have been able to do
before.”
Prendergast, whose surgery was in March, is thankful to have received her transplant when she did.
Arizona’s legislature has proposed to cut AHCCCS funding for transplant patients who receive
medical coverage under the state’s Medicaid program. Geneva, who is a cosmetologist but has been
unable to work and receive health benefits because of the severity of her cystic fibrosis, is covered
under AHCCCS and Medicare. If the state cuts AHCCCS funding for transplants, patients like
Geneva may not be able to receive their transplants.
“It’s sort of like a death sentence to take AHCCCS coverage away from those who are in desperate need for
transplants,” says Geneva. “Had I not have been able to undergo a transplantation, it would have been
devastating. This transplant saved my life.”
“Geneva was declining rapidly and it was necessary for her to have a lung transplantation,” says Rajat
Walia, MD, associate director of lung transplantation at St. Joseph’s. “Her transplant was so successful that
she was out of the hospital just six days after the procedure. She has so many reasons to celebrate a
blessed Easter this year.”
“I can’t explain how awesome it feels to be well,” says Geneva. “I’ve conquered one milestone and now I am
close to reaching another lifelong goal – my wedding. I couldn’t ask for anything more!”
St. Joseph’s Heart & Lung Institute is the only Valley hospital with a lung transplantation program. Before
St. Joseph’s began its program, most valley patients had to travel outside of the state for care.
 St. Joseph’s 

Saved by God, condemned by politicians

12 comments by E. J. Montini - Apr. 4, 2010 12:00 AM
The Arizona Republic

Last week, I spoke with a young woman who feels as if she were raised from the dead and to a middle-aged man who feels as if he's been condemned to die.
The first by God, the second by politicians.
When Gov. Jan Brewer and the tough-talking legislators at the state Capitol decided to solve budget problems by eliminating health-care coverage for kids and sick people, they didn't spend a lot of time speaking with their victims.
It's a lot easier to think in terms of numbers, not names.
To that end, the recently passed state budget would eliminate the KidsCare health-care program, causing roughly 47,000 children to lose coverage, and reduce the eligibility level for the Arizona Health Care Cost Containment System (AHCCCS), Arizona's Medicaid program, cutting medical coverage for 310,000 individuals.
All this is to save money, we were told. Just last week, however, the big brave legislators decided that they DID want to spend money on a lawsuit against federal health-care reforms, even though their concerns have been addressed in lawsuits from other states.
There's no bravery involved in railing against Washington with other people's money. But it would take guts to look sick people in the eyes and say, "We're going to let you die."
We're speaking mostly about people who worked, paid taxes and did everything right until they were unlucky enough to become ill. People like Geneva Pendergast.
She's one of the lucky ones. She got in under the wire. A 26-year-old cosmetologist, Pendergast is a cystic-fibrosis patient who was spiraling toward death until she received a double lung transplant last month.
"For the first time in my life," she told me last week, "I can take a deep breath."
She is looking forward to getting back to work. And she thanks God that her surgery occurred before legislators decided to "get tough" on the infirmed.
Not so lucky is a very ill man who is soon to need a transplant of a different kind. He doesn't expect to get it. Like Pendergast, he has been receiving medical treatment under AHCCCS. The man (still praying for a political change of heart) doesn't want me to use his name or even talk about the type of transplant he needs.
"I can't work anymore and we ran out of coverage a while back," he told me. "It's terrible needing help. It's not what I wanted. But when you run out of money, what can you do? If I don't get a transplant, I guess the state won't have to pay for me or worry about me until I walk into an emergency room close to dying. They can't turn me away then."
I've spoken before about this situation with Charlie Thomas, a transplant social worker. Those who work with such patients have shown that paying for the operations actually costs less than paying for the costs of slowly watching a person die.
It hasn't stopped politicians in need of a quick fix.
"The people who benefit from these transplant services are people who were working, paying taxes, being good citizens and then got sick and lost everything. They're us," Thomas told me.
Some health-care professionals hope that the $150 billion jobs package recently approved by Congress - which includes Medicaid dollars for states like Arizona - might keep the cuts to kids' health care and some AHCCCS patients from going into effect. Less likely is preserving optional programs like transplants and other services.
"The people pushing these cuts are pretty much the same people who call themselves 'pro life,' " Charlie Thomas said. "I'm sorry, but this isn't very pro life."
Reach Montini at 602-444-8978 or ed.montini@

Read more: http://www.azcentral.com/arizonarepublic/news/articles/2010/04/04/20100404montini-politicians.html#ixzz0zZ1TIxQW

 

 

                                 Still really swollen after surgery, but out there walking for CF!! Great strides 2010 :)

            Great strides walk right after transplant. Wearing red for Conner Jones, and walking in honor of my brother and of course us...and everyone else with Cystic Fibrosis.