You've Been Given the Gift of Life, Give it Back!

Welcome friends and family!

Thank you for visiting my blog. It documents my amazing journey from pre to post double lung transplant. I am a 37 year old mother and wife with Cystic Fibrosis who has been more greatly blessed than I could ever imagine possible!

It has been a bumpy ride, but God has given me strength, love, friendship, and, FINALLY, health. My prayers have been answered, my miracle was granted, and I want to share the joy of my new life with you.

If you are a first time visitor, please take a moment to watch The Miracle of Transplantation video below. To me, pictures speak a thousand words.

My entries begin in April of 2008 and my double lung transplant was December 10. Scroll down to my blog archive and you can read from the beginning or jump around. If you are looking for a specific topic, you can use the search engine.

Please feel free to contact me with questions or feedback, I would love to hear from you!

I hope I can help you to experience the love God has for each and every one of us!

May God Bless You with Miracles in Your Life! Nancy


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Monday, November 28, 2011

What a GREAT Weekend!

We are home from the Mid-Atlantic Oireachtas (Every Thanksgiving, the Irish dancing schools from the Mid-Atlantic Region of the Irish Dance Teachers Association of North America gather in Philadelphia, Pennsylvania for the regional Irish dancing championships.  Dancers and teachers, with their families and fans, travel from Delaware, New Jersey, New York and across Pennsylvania for solo and team competitions and coveted regional Irish dancing titles.) in Philadelphia and what an awesome weekend we had!  I have tons of pictures to share, but especially wanted to let you know how Hannah did.

Here is a picture of all of the kids who competed for Hannah's school, Rince Na Tiarna.



Hannah's first competition was at 8:45 Friday Morning and there were a lot of amazing dancers!  This was a solo competition and she took 19th for our Region, quite amazing for her first time at Oireachtas!  We are very proud of her!


Hannah's team competition was the last one of the day yesterday.  She was on the Under 12 girls figure team that consisted of 16 girls who did an amazing choreographed routine.

Here they are practicing on two different occasions.  Unfortunately, we are not allowed to video during the competition, so this is as much as I can show you.  There is no music, but hopefully you can get an idea.

video


video

All the girls on the team need to look the same, so here they are gluing the socks.


Hannah with her friend Katie.


Posing before they go to the competition.


The girls took 1st!!!!  Here they are going on stage to accept their trophy!








Some of the girls from Hannah's team were waiting for awards in another room, but here is the group that received the trophy.


Mary Kay Heneghan, Hannah's teacher is with the girls (on the left).



Each girl gets to have the trophy for a week, guess who has it first?  HANNAH!!!  She will share it with her school tomorrow.



Hannah with her friends Katie and Maddie!


We couldn't be prouder of RNT or our little girl!




Tuesday, November 22, 2011

Oh Happy Day!!!

The prodigal cat has returned and we have bathed her in love!!!



Our little Sweet Pea is exhausted, but super lovey.  I could have held her all day yesterday if I hadn't had things to do.  Hannah cried in the school office when they gave her the news and our whole house seemed so much cheerier without loss hanging over our heads.

Next stop...Philadelphia!!!  I have a lot of packing to do today!





Monday, November 21, 2011

SHE IS HOME!!!!

For those of you who said a special prayer last night for our Sweet Pea, THANK YOU!!!!  Our prayers were answered.  The trap we had set up at the vets office finally attracted her and she was discovered in it this morning.  I can't tell you the overwhelming relief I am feeling!  I called Hannah's school right away to get the message to her that Sweet Pea is home safe.

She has been snuggled in my arms most of the morning, obviously happy to be home.  Other than being dirty and a bit thinner, she seems no worse for wear.  Our God was watching over her and I am so thankful He helped her to find her way back to us.

What a terrific way to start our Thanksgiving week!  Now I can focus my attention on getting us ready to leave for Philadelphia on Wednesday for the Mid-Atlantic Regional Irish Dance Championships.  Our months of weekends in Buffalo are finally over, and now Hannah and her team will have a chance to shine!

Blessings to you all!  Nancy

Sunday, November 20, 2011

Difficult Few Days

Hello friends!

Wow, this has been a tough week!  On Tuesday, Scott brought our cat Sweet Pea to the vet.  As he was loading her in the car to come home, she somehow escaped and ran off into the woods.  Our veterinarian is located in a very rural area and I have spent hours and hours walking through the woods there calling for our dear cat.  We have yet to have any sign of her.

Sweet Pea is the kitten Hannah caught in the midst of my wait for transplant.  I can honestly say, that cat provided Hannah with the solace she needed to get through.  Her loss is weighing heavily on all of us.

The hours spent searching in the cold have taken their toll and I am worn out and feeling lousy.  I need to ask all of you to add to my prayers that God will somehow help Sweet Pea find her way home.  The vet is only about a mile from here, if she were to travel through the woods.

I so appreciate the addition of your prayers.  With each day that passes, my hopelessness grows, and it is crushing my heart!

God bless you all!  Nancy

Saturday, November 12, 2011

Finally, One Picture!

Hawk Nelson
Jonathan, Zaryan, Justin, Jason, Hannah, Me, Daniel

So, I am VERY behind with posting and had hoped to share more pictures by now.  At least I can share the picture of us with Hawk Nelson (aren't they the cutest?).

I have had a crazy few days since we returned from Cleveland.  The Tuesday following the concert, Hannah missed the school bus, so I drove her to school (in my pjs and slippers).  We were stopped for a bus in front of us and had just started moving again when I looked at Hannah in response to a question she had asked and ran into the back of her school counselor's car.  Oh the embarrassment!  Thank God she was awesome about it, but I still feel sick just thinking about it.

I did have the opportunity to speak to a Donate Life Club in Hamburg, NY (1 1/2 hours away) Tuesday afternoon which was wonderful.  I love sharing the wonderful gift God has given me through transplant and the students were so receptive and moved!

I have three more presentations coming up this week, Monday at Hannah's school, Tuesday in Lakeshore and Wednesday in Westfield.  So glad I have some good audio books to listen to, I will be in the car a lot in the next few days.

When things slow down, I will post more concert pictures.  God Bless!  Nancy

Monday, November 7, 2011

Emmanuel: God IS with Us!!!

Have you ever felt the soul within you leap for joy?  I did last night when prayers were answered and God was praised.

I have kept you abreast of the saga of Hannah's Birthday.  As you all know, she was very sick for her surprise party, and Scott and I had to miss her actual Birthday to attend a Komatsu Forklift Truck meeting in North Carolina.  For a mother, missing a child's Birthday is one of the worst things you can possibly do, so I wanted to make it up to Hannah BIG TIME!

Several months ago I decided I was going to get Hannah to a Hawk Nelson concert (for those new to the blog, they are Hannah's most beloved band EVER) for her Birthday.  As only God can, He made that possible by bringing Hawk to Cleveland (3 1/2 hours away) this past weekend.  I purchased VIP tickets for all of us (Scott, Hannah, Hannah's friend Zaryan, and me) and Hannah and I looked forward with excitement to this big event. 

In the middle of the night several weeks ago, an idea came to me.  I wondered if there was any way that Hawk Nelson would be willing to meet Hannah one on one for her Birthday.  With a hope and a prayer, I e-mailed our story to their manager:

On Mon, Oct 3, 2011 at 3:36 PM, Nancy Matthews <nancymatthews74@yahoo.com> wrote:
Dear Mr. Rettler,

Hello!  I am bringing my daughter Hannah to the Rock  & Worship Roadshow in Cleveland on November 6.  We are driving 3 1/2 hours to the show for one reason, my daughter adores Hawk Nelson and asked that we take her to see them as her one and only thing she wanted for her 12th Birthday.

Why am I writing to you about this?  My daughter has had a really rough 12 years.  I have a chronic genetic disease called cystic fibrosis (CF).  Almost five years ago, I was given two years to live.  My lungs and body were deteriorating rapidly from my disease.  I had not been very healthy since her birth, but Hannah had to watch her mommy shrink down to 100 lbs (my healthy weight is 145).  I had a feeding tube providing all of my nourishment, I was on oxygen 24/7, I was in a wheelchair, and I was visibly dying.  We spoke often of my coming death, but also of my faith in a God who would love her even when I could not any longer.

I had completely given up any hope of survival, when a miracle happened for our family, I was given a second chance through a double lung transplant.  We don't know how much time I will have, but we are making the most of every minute of health we are given.

I had been praying that Hannah could develop a strong relationship with God, and one of the ways I had hoped for was through music.  I had tried to expose her to Christian artists, but she never seemed interested.  Last year we had the opportunity to attend Revolve.  I had one goal, that she might walk away from that experience with a new passion for Christ.  What happened there was incredible; from the moment Hawk Nelson hit the stage, my daughter was hooked.  We came home and ordered all of their albums and that is ALL she has listened to since.  The Twilight posters came down, replaced by Hawk Nelson posters, several home-made.  I was thrilled!

I brought her to see them this summer at Darien Lake and we stood for over 5 hours, in the pouring rain at times, so she could be directly in front of the stage.  Being that close to Hawk Nelson was like a dream come true for her.  She and a friend made home-made T-shirts with a picture of Jason on them and the message that Jason was Man Beautiful.  When they got to the band during autographs, Jason got a huge kick out of her shirt, and Daniel had his picture taken with the two girls.  My daughter floated out of the amusement park that night.

I apologize for boring you with all of these details, the real reason I am writing is to see if there would be any way for my daughter and her friend to be able to meet Hawk Nelson at some point before, during, or after the concert on the 6th.  It would make her 12th Birthday something she would always remember.  I purchased the VIP tickets, so we will be there early.  I can't tell you how much it would mean to my sweet girl; or how grateful I would be.  I certainly understand if that isn't possible, but I thought I would at least ask.

Thank you so much for taking the time to read this and consider my request.  Hawk Nelson has already been an answer to so many prayers for me.  Please thank them for their amazing service to God!  May God greatly bless you!

 
  
Much to my amazement, I heard right back with an answer of yes, the band would be happy to meet with us for a few minutes before the show.  I was ecstatic, but fearful that things might not work out, so we decided not to tell Hannah.
 
Last week was crazy, leaving home Tuesday, driving over 11 hours, attending meetings, then driving home.  We returned home on Saturday, and by Saturday night, Scott was as sick as Hannah had been; and with our plans to leave for Cleveland Sunday morning, I was a wreck.  Scott awoke to a temperature of 102; and I to the terrifying realization that I would be taking the girls alone.  I so desperately wanted everything to work out well and was consumed with anxiety the whole drive to Cleveland.
 
To make a long story short, as always, God listened to my barrage of prayers and Hannah received the gift and experience of a life-time.  She met her band, Hawk Nelson, and Jason, Daniel, Justin, and Jonathan greeted her like the angel that she is, with warm smiles and great big hugs.  You would never have known that she was just a 12 year old girl taking up their precious time; they showed her a love that reached right down into my core.
 
Daniel, the bass player had actually taken the time to visit this blog and to Hannah's delight commented on how much he liked her Sock Monkey costume.  The girls were allowed to ask questions, the guys oohed and aaahed over Hannah's latest home-made t-shirt concoction (pictures to come), and finished our meeting with a final round of warm hugs.  I didn't think the tears of joy would ever leave my little girls' eyes (and actually, they have continued on and off all day today).
 
The concert was amazing, (I will share pictures and more info. later) and ended with a great big cherry on top when we stopped by Hawk Nelson's autographing table and those gentlemen once again welcomed Hannah with love.  Daniel remembered her name and wrote it at the top of her poster to be signed, and Justin, the drummer, handed her his drum sticks from the concert that he had saved for her.
 
What more can I say?  It was a magical night; one that I will never forget and will treasure always.  Thank you to the most incredible Christian band EVER!  Hawk Nelson is serving the Lord and bringing children to God, may they be blessed forever!
 
Check them out at http://www.hawknelson.com/

God Answers Prayers


SCIENTISTS could be closer to a cure for cystic fibrosis after successful trials of an experimental drug targeting the underlying cause of the genetic lung disease.
A global clinical trial, including patients from Australia, has found the drug ivacaftor dramatically improved lung function and reduced infections for people with the inherited disease.
The results have raised hopes that ivacaftor could stop life-threatening lung diseases developing in cystic fibrosis patients and help extend their life expectancy.  But while ivacaftor is the first drug to successfully target the cause of cystic fibrosis, it can be used only by a small number of patients who share the same genetic mutation.

One of the Australian scientists involved in trials of ivacaftor, Associate Professor Scott Bell, said about 8 per cent of the 3000 cystic fibrosis patients in Australia could potentially benefit.
"While it's an exciting breakthrough it's not going to be for all patients with cystic fibrosis," Prof Bell said.  "But it gives us hope for drugs that are being developed that might improve outcomes for cystic fibrosis patients with more common or other cystic fibrosis genes.
"It shows what might come over the next five, 10, 15 years."

There are about 1800 cystic fibrosis genetic mutations, many of which are being targeted by other drug trials.  The mutation targeted by ivacaftor is known as GFF1D, the second most common mutation shared by Australian cystic fibrosis patients.
For the ivacaftor trial, 19 of the 161 patients who took part were from Australia. Each had at least one copy of the GFF1D mutation.  Half the group was given one ivacaftor tablet twice a day for 48 weeks while the remainder received a placebo.  By the end of the study, published today by the New England Journal of Medicine, those taking the drug were 55 per cent less likely to have problems like coughing and shortness of breath compared with those given the placebo.
Cystic fibrosis affects a number of organs, particularly the lungs and pancreas by clogging them with a thick, sticky mucus.  As a result, patients can develop repeated chest infections which can cause irreversible lung damage and death.
Prof Bell, of the Queensland Children's Medical Research Institute, said while it was too early to call ivacaftor a cure as long-term studies were needed, it was "a first step along that path".
Cystic Fibrosis Australia CEO Terry Stewart said ivacaftor was an important breakthrough drug and that other similar ones were being tested in the hope they could be used by a wider group of cystic fibrosis patients.
"There's wonderful progress that's been made, particularly in the past three or four years," Mr Stewart said.  "These are totally new types of drugs that will provide quality of life in a different way.  They're helping us deal more directly with the problem."

The company behind ivacaftor, Vertex Pharmaceuticals, hopes to have regulatory approval for the drug granted by authorities in the US and Europe in 2012.  If successful, it plans to makes similar applications in Australia, New Zealand and Canada.


Read more: http://www.news.com.au/breaking-news/drug-breakthrough-for-cystic-fibrosis/story-e6frfku0-1226184925621#ixzz1d4u8ivj6

Tuesday, November 1, 2011

A Gaga-licious Halloween

Pumpkin Carving...



 Hannah's (hers has HN on the side), Scott's, Mine

Trick or Treat!!



Hope you had a Hauntingly Good time!

The Miracle of Transplantation

Pause the music player before watching.