6 months post transplant :)

Thursday, September 16, 2010

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


Tuesday, September 14, 2010

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

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.
 








Friday, September 10, 2010

Rockin' my oxygen!

     I hated having my pic taken while wearing oxygen! I always felt like it made everything seem so much worse to everyone watching. But it was bound to happen, considering I required it 24/7. I def don't miss tripping over those stupid tubes, tripping other peeps with those stupid tubes and constantly having to make sure if I left the house I had enough to last me. I ran through about a tank of oxygen every 45 min, so I def had to plan accordingly. I was on 5 liters all the time. At home I just had an oxygen machine that had cords that were long enough for me to go where ever I wanted to in the house. People were always stepping on them and the machine was so loud! It's prob the best change since transplant, besides being able to breath! It dried out my nose so bad I had to put vaseline on it and it burned like hell! Def don't miss that! I know I looked pretty bad in some of these...but I was pretty sick.


 

NOT for the squeemish...

So, my sis asked the surgeons to take pics of my old/new lungs during surgery! At the time I was like, "Seriously Laura?!" LOL But now I'm glad that I have them. (Don't look at these if you have a weak stomach)





Friday, September 3, 2010

Coming home!


IT's CRazy..BuT TrUE!

           There are so many weird things that happened during my transplant, and some of them contributed to it's extreme success. Lot's of things just fell into place which could have only been god's doing.

1) I waited only two months for my lungs..that's it! (only it seemed like a lifetime)

2) I received my call just in time...we did not know how much longer I could wait.

3) My first call for my transplant was my only call. I never had to experience any 'dry runs' like other transplant patients.

4) My lungs came from the same hospital that I was transplanted. They did not have to be shipped from another city or state.

5) They didn't have to put me on the heart/lung machine. My organs were strong enough to do all their own work without any machine's assistance.

6) The lungs fit almost perfectly. Only one had to be trimmed down just a little bit...which is weird considering how small I am.

7) My dad and inlaws arrived on a plane from Nebraska just in time to see me and talk a bit right before I went back to the OR.

8) The pajama pants that I was wearing strangely vanished. I was wearing them when they wheeled me back for surgery, but they were no where to be found after the operation. LOL

9) My surgery only took about 4 hours. Typically, lung transplants take anywhere from 6-8 hours..if not longer.

10) My donor saved about 20 lives the day he died. Such a miracle! Be an organ donor please!

11) My lungs popped right out! HA HA A lot of times they have to dig them out of the chest cavity, which takes longer.

12) I was discharged from the hospital just 7 days after my transplant. Most patients spend at least 2 weeks in there (or more) recovering.

13) I had virtually no complications during my recovery process.

14) The surgery I had to place my feeding tube was way worse than my transplant itself. The recovery from that surgery was unbearably painful.

15) When they pulled out my drainage tubes it sounded like a suction cup being pulled off a window! lol POP!

16) At first, I actually thought that if I did too much too soon that my lungs might come "un-hinged"..ha ha! I was afraid that they might fall out!

17) They had to break my sternum to put my lungs in. Then they inserted a little metal plate to reconnect them. For the longest time I was afraid of setting off the alarms at the airport! lOL!

18) Sometimes when I take a deep breath I hear a 'click' sound, which is the plate shifting.

19)My docs told me that I have a "curved" sternum so my plate sits on it weird. They have to keep a close eye on it because it will loosen easily.

20) I had no antibodies in my original lungs, so there is a lot less chance for rejection.

22) Your first breaths taken after transplant are not a smooth as everyone says they will be. It takes a couple days to get the air flowing beautifully, but when it does the feeling is indescribable!!



            So you see...prayers really do work!:)
 

Wednesday, September 1, 2010

Letter to my Donor's family...

       So..I received some awesome news yesterday! My donor's family wants to meet me! (Thanks for the news Mara!) I'm very nervous because I'm sure that it will be a very emotional night for everyone involved. I'm very honored though, I mean they didn't have to have anything to do with me at all! But I'm so glad that they are ready to meet the people their son's organs saved. I'm hoping it will ease their mind a bit..knowing how much good has come out of their son's passing.
       The family is being honored at a gala here in Phoenix, so that's where I've been invited. I'm not positive, but I think it's the CF foundation(Phoenix chapter) that is giving them the award. I can't recall the name of the reward..I'll have to ask my cousin again because she has all the info. But it's all very exciting news and I can't wait! I plan on giving them my letter in person at the gala, thanking them for this tremendous gift they've given me. It goes like this..

Dear Donor family, 
     I've sat down to write this multiple times, afraid I would fail to find the words to express my gratitude. I know there isn't anything I can say to ease your pain, but I want to thank you from the bottom of my heart for this unselfish gift you have given me.
     Now, I can laugh, sing, cry, love, breath...and today I write because of you. I'm in awe everyday of your gracious ability to give at a time when so much was being taken from you. I pray today, and the days to come, that god will mend your broken hearts and that you may find some comfort in this letter.
     I'm truly sorry for your loss, and I pray that each and everyday gets a little bit easier. I want you to know that with every breath I take your loved one is with me. I will try to live my life to the absolute fullest, and take great care of these precious lungs. I promise you that. I will not waste one moment of this amazing gift of a second chance that I've been given.
    Even though they are gone they will never ever be forgotten. Your family will forever be in my prayers and you will always hold a special place in my heart.
     
        Thank you so much from the bottom of my heart.
                  Love, the recipient of your loved one's lungs