Jenn here again...
this morning we are headed back to the hospital in hopes/expectation that we will see Ashley taken off the ventilator today and taking her first breath. This is the first breath with her new lungs and the first breath of her new life. A new life that she has fought, pilaged and worked for! Her family, her parents, her brother, her friends and most of all you have fought along side her. What an amazing person to fulfill this amazing life!
Sunday, June 20, 2010
Saturday, June 19, 2010
New lungs
The surgeon came in. Ashleys new lungs are in and she did GREAT! We will see her through the glass soon. Love you cousin!
New lungs
Ashley is getting her new lungs today!!!!!! She got the call around 7:30 this morning and immediatley went to Tampa. They checked in and got prepped and ready and were in the OR before the surgeon had visualization. At 1:45ish he gave the lungs the green light and she began her surgery. I will update more when shec omes out. It is about an 11 hr surgery so hopefully by 12:30 am she is in recovery.
Wednesday, June 16, 2010
Some Thoughts
So a lot has been going on...even though nothing has been going on. LOL Makes no sense right? Well last week we had a visit from some old friends, Sue and Jim, they were down here for our friend's wedding. It was so nice to have the whole Courtney Villages group together again. We went Thursday to the pool and had some BBQ like the good ole days. One thing was different though....I was on oxygen.
I don't know how or what people feel exactly when they see me with it for the first time. It was the first time Sue, Kristen,Zach, Jen, JP, Maddy, Jim...sheesh...a lot of people had to see me with it for the first time. When you don't see someone everyday, they don't see those changes. Anyways, I feel a sense of "lets not talk about it because I don't want to hurt you" in the air. I don't mind talking about it. I'm not bothered by it at all. Anyways, Maddy did it the best...She's 6 or 7. She goes "Whats that on your face?" and I said "Its oxygen...it helps me breathe." She then replies, "oh, ok...can I have some of your ICEE?" and continues to run off with it. She accepted it, didn't care, still loved me just the same. I guess thats why they didn't say anything to me...because they still love me just the same. God knows, I still love that gang!!
Also, watching Jen and J.P. get married was so nice. She was a beautiful bride. The hardest part was not being able to dance at the recepetion. I miss that. I had to watch everyone else boogie down and I was jealous..Then, when she walked down the aisle, I had to make a conscience effort to not be pulled back into my chair by the O2 cord when jumping up. That kind of stuff is a bummer-a rude reminder of how bad my health is. I used to dance until 2 A.M. without stopping. Now, I need to make sure I have enough O2 in my tank to even make it home. At the time of dance we were almost 3 hrs in to the whole day, and my tank only goes about 4hrs. Plus, I turned it up because I was so darn excited and it was HOT!So I miss dancing...but that will come soon enough. Its not like I was a great dancer anyways haha!
Golf Tournament is coming up, and the Yard Sale...I'm getting excited just because I'm a social butterfly and I can't wait to meet new people hahah Raising money will come in time. The IPAD drawing was a huge success thanks to my cousin, Jenn, and my mother-in-law Cheri, passing out all the IPAD cards. I think we raised a pretty decent amount. I get so scared thinking of the costs that will come up. Here goes another train of thought....
In Arizona, there is a 27yr old girl with CF who recieves something similar to Florida's Medicaid. Well this fund is running out, and they decided the first cuts should be in transplants. Lung, Kidney w/o pancreas, bone marrow, liver transplants in adults will be no longer paid for. She had finally got listed April 20th, but they have told her if Oct 1st comes around and she has not had her transplant, then they cannot pay which means she will not get the transplant. The ignorance of this is they were qouted as saying "Patients with cystic fibrosis who get a lung transplant might get extra time with a good quality of life, but inevitably the CF will reinfect the new lung." This is very much NOT true!! CF is in the DNA, which the new lungs carry different DNA-hence the reason for anti-rejection meds. Why are these people the ones deciding where the costs are cut. If they don't know the facts then how can they judge. Its terribly sad. I think it bothered me so much because Tiffany and I have very similar stories-we've both lived normal lives and both have had to fight to get our costs covered. I pray she gets her lungs in time. And I can't help but wonder what these people would do had it been their child on the list. Oh, and children can still get transplants...but at 26/27 I think her and I both still have a lot of life to live!
I don't know how or what people feel exactly when they see me with it for the first time. It was the first time Sue, Kristen,Zach, Jen, JP, Maddy, Jim...sheesh...a lot of people had to see me with it for the first time. When you don't see someone everyday, they don't see those changes. Anyways, I feel a sense of "lets not talk about it because I don't want to hurt you" in the air. I don't mind talking about it. I'm not bothered by it at all. Anyways, Maddy did it the best...She's 6 or 7. She goes "Whats that on your face?" and I said "Its oxygen...it helps me breathe." She then replies, "oh, ok...can I have some of your ICEE?" and continues to run off with it. She accepted it, didn't care, still loved me just the same. I guess thats why they didn't say anything to me...because they still love me just the same. God knows, I still love that gang!!
Also, watching Jen and J.P. get married was so nice. She was a beautiful bride. The hardest part was not being able to dance at the recepetion. I miss that. I had to watch everyone else boogie down and I was jealous..Then, when she walked down the aisle, I had to make a conscience effort to not be pulled back into my chair by the O2 cord when jumping up. That kind of stuff is a bummer-a rude reminder of how bad my health is. I used to dance until 2 A.M. without stopping. Now, I need to make sure I have enough O2 in my tank to even make it home. At the time of dance we were almost 3 hrs in to the whole day, and my tank only goes about 4hrs. Plus, I turned it up because I was so darn excited and it was HOT!So I miss dancing...but that will come soon enough. Its not like I was a great dancer anyways haha!
Golf Tournament is coming up, and the Yard Sale...I'm getting excited just because I'm a social butterfly and I can't wait to meet new people hahah Raising money will come in time. The IPAD drawing was a huge success thanks to my cousin, Jenn, and my mother-in-law Cheri, passing out all the IPAD cards. I think we raised a pretty decent amount. I get so scared thinking of the costs that will come up. Here goes another train of thought....
In Arizona, there is a 27yr old girl with CF who recieves something similar to Florida's Medicaid. Well this fund is running out, and they decided the first cuts should be in transplants. Lung, Kidney w/o pancreas, bone marrow, liver transplants in adults will be no longer paid for. She had finally got listed April 20th, but they have told her if Oct 1st comes around and she has not had her transplant, then they cannot pay which means she will not get the transplant. The ignorance of this is they were qouted as saying "Patients with cystic fibrosis who get a lung transplant might get extra time with a good quality of life, but inevitably the CF will reinfect the new lung." This is very much NOT true!! CF is in the DNA, which the new lungs carry different DNA-hence the reason for anti-rejection meds. Why are these people the ones deciding where the costs are cut. If they don't know the facts then how can they judge. Its terribly sad. I think it bothered me so much because Tiffany and I have very similar stories-we've both lived normal lives and both have had to fight to get our costs covered. I pray she gets her lungs in time. And I can't help but wonder what these people would do had it been their child on the list. Oh, and children can still get transplants...but at 26/27 I think her and I both still have a lot of life to live!
Monday, June 14, 2010
Congrats Lynn (Susan) Fort...you got the IPAD =) I hope you have a blast with it. Thanks goes to everyone who donated and helped spread the word about the fundraiser! We have more coming up (a yard sale and golf tournament). And a BIG thank you to my cousin's family-The Zani's-without them this wouldn't be possible. HUGS!
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