Nancy's Lung Transplant Journey

Broken Hearted

2012-02-02T14:23:00.002-05:00

Yesterday and today have probably been the hardest days in Hannah's young life. Now, to an adult, the pain and sorrow she is experiencing may seem silly, but to Hannah, she feels like her world is falling apart. What am I talking about? This announcement that was made last night:

We want to officially announce that Jason Dunn will be leaving Hawk Nelson at the beginning of May to pursue his solo career.

If you have followed my blog at all, you know that my Hannah has had a true love affair with the band Hawk Nelson. Though it has only been a year since she first saw them in concert, her love for them has been strong and pure. This truly is her first heart break.

As a parent, there is nothing worse than seeing your child in pain. I know it will pass, but right now, it is tough. Part of me feels like perhaps I should not have encouraged her love so much, but then I look back at how this band has helped her to grow and has introduced her to the amazing world of Christian music, and I cannot regret. Before Hawk, she didn't know Hello Kelly, Relient K, Manic Drive, Disciple, Family Force 5, or any of the other amazing Christian artists she is discovering.

Life is not easy. We have all experienced a broken heart at one time or another, it isn't something I was going to be able to protect her from, but you all know I would have if I could have.

For now, I will pray for her to find peace with the decisions that have been made, decisions that are totally beyond her control. I pray for Jason, that he can be happy in his new solo career, but especially for other members of Hawk Nelson, Daniel, Jonathan, and Justin as they look into the future and make new, hopefully bigger, plans for themselves. They are all amazing men who have a true love of God and others! Thank you, Hawk Nelson!

20 Million in 2012 Campaign

2012-01-30T15:40:00.000-05:00

20 Million in 2012 Campaign

Donate Life America has recently launched a campaign to register 20 Million new organ donors in 2012. The national organization promoting organ, eye and tissue donation in the United States is launching a bold new initiative, “20 Million in 2012,” which will focus on radically increasing the number of people registered on state donor registries. The official launch of the campaign comes on the heels of its announcement during the Tournament of Roses Parade in Pasadena, CA, where every year since 2004 it has sponsored the Donate Life float. This year’s float again featured inspirational stories of organ donors and their families, a tradition that the “20 million in 2012” campaign will continue throughout 2012 as it features powerful stories of those affected by organ, eye and tissue donation. The “20 Million in 2012” campaign will feature four national Donate Life events throughout the year- the Donate Life Flash Mob on March 24th, Donate Life Blue and Green Virtual Fashion Show on April 20th, Donate Life Champions in Fall 2012 and Donate Life Linking Hands for Life all year long.

If you have not registered to be an organ, tissue, or eye donor and would like to, visit: http://donatelife.net/register-now/

Some Great Info. from TransplantExperience.com

2012-01-30T15:34:00.000-05:00

Know Your Medication Rights

After a transplant, your doctor selects an immunosuppressant regimen that she thinks is best for you, taking into account your individual medical history. It is not only important that you make a commitment to taking these medications, but that you understand why this commitment is so critical to your long-term transplant health.

Maintaining the right balance of immunosuppression

Many factors can influence how an immunosuppressant is absorbed into your body, including whether you take it with or without food, the type of organ transplant you received, and other conditions you may have.^1,2

If the amount of drug in your body is reduced due to a change in how it is absorbed by your body, you may have too little immunosuppression, which can increase the risk of rejection. If absorption is increased, you could have too much drug in your system, increasing the chance for additional side effects.^1,3

For these reasons, not following your medication regimen consistently may increase your risk for rejection or cause serious side effects. It is important to understand the different forms of medication and, specifically, what your doctor intends for you to take.

Understanding brand and generic medications

The Food and Drug Administration (FDA) requires brand name drugs and generic drugs to be safeboth are expected to meet the same standards of strength, purity, effectiveness, manufacturing, and quality controls. Generic drugs are considered bioequivalent (which means that the same amount of medicine is absorbed in the body within the same amount of time) based on studies conducted in 24-36 healthy volunteers. The FDA relies on the safety and efficacy studies conducted by the manufacturer of the brand name drug to establish the safety and efficacy of the generic medication.^1,4

For some medications, your doctor may want you to take a brand name drug

Brand name drugs have costs associated with the discovery, development, and multi-phase clinical testing required to bring a new drug to the market. Generics cost less because generic manufacturers dont have to repeat extensive clinical trial programs or take on the investment costs of researching and developing a new drug.

For other medications, your doctor may want you to take a generic drug

A generic drug is a copy of a brand name drug that is the same in dosage, safety, strength, way it is taken, quality, performance, and intended use. Generics have the same active ingredients as their brand counterparts, but may have differences in the inactive ingredients. A generic drug can be approved for marketing once the patent on a brand name drug has expired.

Receiving the medications intended for you

If your doctor intends for you to take brand name Prograf^® (tacrolimus) capsules, contact your transplant team immediately if your capsules look different from those pictured above^†

In most cases, pharmacists or pharmacy personnel are not required to tell you or your doctor if they decide to substitute a generic drug for the brand name drug. Retail and mail-order pharmacies in many states are permitted—and are sometimes required—to fill all prescriptions with generic drugs. Automatic substitution of generics for brand names may occur unless your doctor indicates brand name Prograf capsules only on your prescription. You can also tell your pharmacist you want brand name Prograf.⁵

What is Prograf (tacrolimus) capsules?
PROGRAF is a prescription medicine used with other medicines to help prevent organ rejection in people who have had a kidney, liver, or heart transplant. PROGRAF is not for use with medicines called cyclosporines (Gengraf^®, Neoral^®, and Sandimmune^®) and is not for use with a medicine called sirolimus (Rapamune^®) in people who have had a liver or heart transplant. It is not known if PROGRAF is safe and effective when used with sirolimu s in people who have had kidney transplants. It is not known if PROGRAF is safe and effective in children who have had kidney or heart transplants.

Important Safety Information

What is the most important information I should know about Prograf?
Prograf can cause serious side effects, including:
1. Increased risk of cancer. People who take Prograf have an increased risk of getting some kinds of cancer, including skin and lymph gland cancer (lymphoma).
2. Increased risk of infection. Prograf is a medicine that affects your immune system. Prograf can lower the ability of your immune system to fight infections. Serious infections can happen in people receiving Prograf that can cause death.Call your doctor right away if you have symptoms of an infection such as fever, sweats or chills, cough or flu-like symptoms, muscle aches, and/or warm, red, or painful areas on your skin.

How do you know if it is God or You?

2012-01-14T20:03:00.000-05:00

Have you ever wondered whether something you felt moved to do was actually God directed or you directed? I had the perfect example today.

I had the strong feeling today that I had to give away my VIP ticket to Revolve (the retreat I am taking my girls' group to in March). I have been looking forward to spending time up front with the girls, observing their reactions, and being close to the action. It has recently come to my attention that one of our girls stopped coming to our group because she couldn't afford to go to Revolve. I felt horrible!

Today is her Birthday, and I was moved to give her my ticket. There are no VIP tickets left, so I knew I would have to buy a General Admission ticket and not be with the girls if I followed this instinct. I can tell you, my selfish human heart did not want to give that ticket up; but my dear Father encouraged me, and I did.

That was God. I don't need Revolve, these girls do. It was so much more important that this young lady have this opportunity, than me.

Perhaps that is how we know. When God asks, it usually isn't easy. He asks for sacrifice; but when we follow-through, we can feel peace.

I don't know yet how that young lady liked her present, but I do know that I did the right thing!

May you listen, and be willing to be bent, when He asks! God bless you all! Nancy

Happy New Year!

2012-01-04T17:05:00.001-05:00

I can't believe Christmas is over; time sure flies when you are having fun with friends and family! My parents joined us again this year for Christmas, and it was such a relaxing and enjoyable visit. I always hate to see them go!

We brought in the New Year with a Feis in Pittsburgh, the wedding of my dear friend Ruth's son, and a Christmas celebration with Scott's family (we had to post-pone Christmas a week because of my brother-in-law's work schedule.) It was all lovely.

I have to admit to something, however; I felt a lot of guilt this year. Although I loved my presents I received, I felt guilty about each one. I already have so much, how can I possibly deserve more? It pains me to know there are families and children in our own country who had nothing this Christmas. I realize this is not a problem I can solve; but it still makes me feel guilty. Please pray for each person in our world who is suffering; who doesn't have the necessities of life; who is cold, alone, and afraid. Our prayers can make a difference, so let's send some powerful prayers out for them!

I also have to let you all know that I have had a difficult time since Thanksgiving. I think I shared that I was sick, well, I am still struggling to overcome what appears to be a virus. It has been well over a month, and I am still tired and at times feeling ill. I can hear again, which is a HUGE improvement, but I have had to really slow down. Over the holidays, I needed a long nap each afternoon just to function in the evening. This slowed down time has just served as one more reminder of the incredible gift I have been given. Please continue to keep me in your prayers!

May God bless each and every one of you in this new year! My love goes out to you all! Nancy

A Very Merry Christmas Wish!

2011-12-18T14:17:00.003-05:00

Dear friends and family,

We wanted to wish you all a very blessed Christmas and New Year. Our hearts will be with you during this holy season.

May we not forget the true meaning of Christmas:

⁹ An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. ¹⁰ But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. ¹¹ Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. ¹² This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”

¹³ Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,

¹⁴ “Glory to God in the highest heaven,
and on earth peace to those on whom his favor rests.” (Luke 2: 9-14)

May you all be blessed with the spirit of Christmas who is Christ Our Lord!

All of our love, Nancy, Scott & Hannah

Hannah Shares her Team's Trophy with her School

2011-12-18T14:08:00.000-05:00

I was finally able to get this video to upload. Here is Hannah sharing her trophy and performing St. Patrick's Day for her school.

An Amazing Three Year Re-Birthday!

2011-12-12T13:17:00.002-05:00

Wow, what a great night! It is so awesome that with Christian groups you can actually meet and talk with them. I told Hannah how lucky she should feel that she has had the chance to meet Hawk Nelson three times and be in the front row for each concert. That is an opportunity I never had when I was a kid.

These guys are true sweet hearts. There is nothing put on with them, they are genuine and that is really special. Though they may think Hannah and I are stalkers, they sure didn't treat us like that.

The guys seemed to be thrilled to get their shirts. As soon as Dan saw them he looked at Jason and said, "It's the Hawk shirt!" with excitement. Well worth the time they took to make.

Hannah's t-shirt was dedicated to the drummer, Justin Benner, because of his sweetness in saving his drumsticks for her at the last concert. I wish you could have seen the joy her shirt brought to him, it made me so happy!

We also got to meet the headlining band, Family Force 5. I did not know what to excpect, but they were great!

Because we had VIP tickets, we were able to have the meet and greet with the bands, but we also got a special acoustic set, that was hilarious and tons of fun!

I am sure you can't tell from this picture how happy we were!

The first band who played was Manafest. Jon from Hawk Nelson played the guitar with them and it was terrific! He is such an incredible musician!

When Hawk Nelson took the stage, Hannah and I were in our glory. Front row, yet again, so we had the best views of...

Jason Dunn

Daniel Biro (he is actually pointing right at Hannah in this pic)

Jon Steingard

And, though he is hard to see, Justin Benner.

The snow was falling (yes indoors, during the show) and everyone was filled with Christmas cheer!

Life is to be celebrated and enjoyed. We all need to stay focused on the blessings we have been given. Each day is a gift and we must treasure it!

I LOVE my Hair!`

2011-12-09T08:15:00.001-05:00

Sorry about the self photo, it doesn't really capture my new do, but I just wanted you all to know that I love it! It was just what I needed.

Getting ready to head to Cleveland for an awesome concert tonight!

Can't Catch Up!

2011-12-07T20:25:00.001-05:00

So, I realize I said I was going to post more pictures from our trip to Philadelphia, but to be honest, as soon as we got home I got a terrible head cold, so I have been in slow motion. I had to cancel a speaking engagement last week, and did two this week, though I am not sure how well they went since I could not hear out of my right ear and I kept having the "tickle" cough. Today was my last presentation for the year and I am relieved, I love going out and talking with students, but I am RUN DOWN!!!

Tomorrow I am going for a pampering morning of hair cutting and frosting (haven't you always wanted to "frost" yourself?). I need it, I have been feeling a little down about my physical appearance lately. I guess it really never occurred to me that I would gain 50 lbs. and go up 10 pant sizes after transplant. If one more person tells me I look "healthy" I think I will scream!!! Please don't get me wrong, it is great to have some weight on these bones, but it is something you really do have to adjust to, and I am still working on that. I am hoping a new hairstyle might make my Prednisone face a little less roundly!

I am getting really excited! I have the most incredible date for the eve of my transplant anniversary. I get to spend this Friday with some of my favorite people, get ready for it... Hannah, Scott, AND the guys from HAWK NELSON!!!! Yes, we get to see them in concert again. Who knew my 12 year old could make me a freak over a band again (sorry Goo Goo Dolls, sorry Bon Jovi, you have been replaced in my heart!). We have VIP tickets to a Christmas show where we get to spend time with the band two hours before anyone else (well, us and 47 other VIP members). Of course, Hannah and I created a new shirt for the occasion. We also made each of the guys a shirt like the one they loved at the last concert (Here is the picture the bass player took of it):

Hopefully they will like their Christmas present!

I am not going to make any promises about posting again before the weekend, because I hate to let anyone down. I will think of you all as I celebrate THREE YEARS POST-TRANSPLANT this weekend and I want to send out a HAPPY 4 YEAR RE-BIRTHDAY to JAMIE on Saturday also!!!

God's blessings to all of you!!! Nancy

What a GREAT Weekend!

2011-11-28T14:36:00.001-05:00

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.

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!

Oh Happy Day!!!

2011-11-22T08:45:00.001-05:00

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!

SHE IS HOME!!!!

2011-11-21T09:48:00.001-05:00

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

Difficult Few Days

2011-11-20T11:37:00.001-05:00

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

Finally, One Picture!

2011-11-12T10:04:00.001-05:00

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

Emmanuel: God IS with Us!!!

2011-11-07T22:49:00.000-05:00

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

2011-11-07T22:09:00.000-05:00

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.

A Gaga-licious Halloween

2011-11-01T08:17:00.002-04:00

Pumpkin Carving...

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

Trick or Treat!!

Hope you had a Hauntingly Good time!

Hannah's Surprise Party

2011-10-31T10:46:00.000-04:00

I have not had a chance to write since we surprised Hannah with a Halloween party for her Birthday. The poor kid was as sick as sick could be, but still enjoyed every minute of it.

The original plan was to have the party on a Saturday afternoon, when Hannah returned from dance in Buffalo. It was going to be perfect. Hannah would arrive home, totally unsuspecting, I would have had the whole day to prepare, her friends would all be there, and her shock and joy upon hearing "SURPRISE" would fill my heart.

It figures that something would interfere with my fabulous plan, yes, Hannah got sick. Not just cold sick, high fever, feeling miserable sick.

Hoping it would only be a 48 hour bug, I moved the party to Sunday. Now, what to do with Hannah? Scott and I had spent the whole week putting together an AWESOME Haunted House in the basement and had to creep around the last two days making the final preparations. Hannah believed we were having a family party that evening, so she didn't get suspicious of my decorating the dining room and preparing her cake.

About an hour before the party, my parents convinced Hannah to go for a ride with them in the car. The final preparations began, me running around like a chicken with her head cut off trying to finish all of the preparations.

Amazingly, all of Hannah's friends arrived on time, Hannah was clueless and was totally shocked when she entered the room. She loved her Sock Monkey costume we had ordered for her, and the haunted house was a screaming success.

Hannah's Jason Dunn from Hawk Nelson Cake

Though Hannah was exhausted and feeling crummy when everyone left, but she had a great time and I was so thrilled that it all worked out!

Happy Halloween

2011-10-31T10:11:00.002-04:00

Do you ever feel like you lose time? I just can't seem to keep track of time any more. Before my transplant, every day dragged on into the next and time crept by. With new health, comes speeding time, time that literally whizzes by, even when I want it to just slow down. At times it is hard to appreciate the moments when they are gone in a blink of an eye.

I woke up this morning and, with horror, realized that tomorrow starts November. Didn't October just begin? That is how it feels, until I start to recount every event that has occurred since October 1st. The trip to Pittsburgh, my Birthday, my parents' visit, Hannah's play, a surprise party for Hannah, Hannah getting very sick, etc.

There are days I wish time would slow back to that pace of before. It doesn't seem fair that when I wanted time to fly by, it crept along, and now that I have so much to appreciate, time won't let me. I have this growing to do list, and yet I can't seem to find the time to get any of it done, it is CRAZY!

Am I the only one who feels this way? Am I in the Twilight Zone, or is it just Halloween?

Hello!

2011-10-22T10:35:00.002-04:00

Dear friends, Hello! I am sorry I have been gone so long. One of the wonderful things about post-transplant life is that the computer takes a much lower priority than life. It is funny how, before transplant, the computer was my way to connect with the world; but now I am out living in the world, and the computer, at times, gets totally forgotten.

Wow, it seems I have a lot to update you on. First, I have finally kicked the Pseudomonas infection, at least for now. We spent my Birthday in Pittsburgh, and the best gift I received was not needing the bronchoscopy that was scheduled for 5:00 a.m. on my Birthday morning. The day before at my appointment with Dr. Pilewski, my pulmonary functions were back up where they needed to be and my chest sounded clear, so he opted for a CT instead of a bronchoscopy, hooray!!! Now let's just hope I can maintain healthy lungs for a while. Dr. P. wondered if I might be overly susceptible to Pseud. infections since I have had so many in the last year. Please pray that I can keep it at bay for a long stretch now.

We have been traveling to Buffalo a lot for Hannah's dance practices. She spends the whole day there on Saturday preparing for Oireachtas (the big regional competition over Thanksgiving weekend in Philadelphia) and part of the day Sunday for her lessons. She also just performed in her Junior High play last night, even though she has been very sick with a high fever (102.6 this morning). She was such a trooper and didn't want to let her cast down. I am praying that I don't get the virus she has, it seems horrible!!!!

Here is a picture of the cast. It was a Halloween themed play (hence some of the costumes).

These are all girls who are in my girls' group and were also in the play. Aren't they cute!

My parents are here visiting which is always fabulous! They came east for a wonderful celebration of the Holy Union Sisters' 125th Anniversary (for those of you who didn't know, my mother was once a nun). I know my mom's trip back to her home in Fall River, Mass. certainly rated in the top ten events of her life. She got to visit with her high school friends (I want to send a big hello to all of you, I had no idea I had such a devoted group of supporters, my love to you all!) and of course see several of the women she joined the convent with so many years ago. I am so happy she got to be there.

We had planned a surprise Birthday party today for my Hannah who will be 12 on November 2, but have had to postpone until she is feeling better. I will look forward to sharing pictures from that if or when it happens.

I will try not to be so lax in posting, but life is too good to miss! My love to you all! Nancy

Why have I been so quiet?

2011-09-27T09:58:00.000-04:00

Have any of you been wondering this question? Well, I have been working on a project for the last six months and I finally brought it to completion at the end of last week.

Ever since I wrote my Chronic Illness book I have dreamed of having it published by a "real" publisher. At the time that I wrote it, I was too sick to write a proposal and approach publishers, so I self-published. I decided earlier this year that it was time to pursue the real thing. Never realizing how much work it takes to write a proposal, I began the arduous process.

In a proposal, you have to show a publisher that your book has sales potential; Scott compared it to writing a business plan. I had to research books that are similar already on the market, analyze them, and compare them to my own. I had to research publication options and the markets that would be interested in such a book, etc. I think the hardest part was writing about the author. I am not very comfortable bragging about myself. Luckily, it was suggested to me that I write it in third person, this was very helpful!

So, to make a long story short, I started researching publishers and found four that seemed to be a perfect match for my book. The proposals are in the mail and now all I have to do is wait and PRAY!

Would you be willing to pray that one of those publishers feels my book is worthy? I can't even tell you how honored I would be to be able to finally get that book out to the many individuals who are suffering because of chronic or terminal illnesses.

My love to you all! Nancy

A Rough Couple of Weeks

2011-09-20T10:41:00.001-04:00

Hello friends!

I am finally getting a chance to update my blog. It has been a difficult couple of weeks. As most of you know, I came home from Jackson and got sick. Well, believe it or not, I am still struggling. It is another Pseudomonas infection, my 50,000th (or so it feels) of the summer. I am scheduled to have a bronchoscopy on October 7 (my Birthday, what a great way to celebrate) and hopefully we can get to the bottom of what is going on in my lungs.

My aunt also passed away last week, so I drove six hours to Baltimore to be with my cousin for the funeral. I wouldn't change a thing about that, it was so good to be there and I really felt in my heart that was where I needed to be, but it certainly took a toll on my already weak body.

I am trying to get some rest this week, but would really appreciate all of your continued prayers. My love to you all!!! Nancy

A New Twist on Organ Donation

2011-09-07T14:13:00.000-04:00

A new twist on organ donation...

This is fascinating. At www.matchingdonors.com patients can actually search for a living donor and individuals interested in donating organs can find patients in need. A whole new frontier in organ donation.

Please Support Cammi's Husband!

2011-09-07T14:05:00.001-04:00

Hello! If you have followed my blog for any length of time, you probably have heard of Cammi. She is my transplant friend who was waiting for new lungs with me in Pittsburgh. Over the weekend Cammi celebrated two years since her transplant which is something to truly celebrate.

I recently received a message from her husband Lance that I had to share with all of you. He is doing something amazing to raise money for a very noble cause, the Boomer Esiason Foundation. This foundation helped me with some of my re-location expenses for transplant and is an incredible support for those of us with CF. Lance is running the New York City Marathon, a feat I can only imagine, and is running it as a member of Team Boomer. If you would be willing to sponsor him, I would be greatly appreciative!

Here is Lance's message:

Dear Friends and Family -

On November 6, 2011, I will be running the New York City Marathon. This will be my fifth marathon, but it will be my first marathon as a member of a team that is united for a cause. The team I am joining is Team Boomer.

The members of Team Boomer will be running the New York City Marathon to raise money for the Boomer Esiason Foundation. Boomer Esiason is a former NFL quarterback who started the foundation after his son was diagnosed with cystic fibrosis (CF). The mission of the foundation is to increase awareness, education and the quality of life for those affected by CF while providing financial support to research aimed at finding a cure. The foundation also provides funding to help cover costs that patients incur in connection with lung transplantation.

CF is a life-threatening disease that causes difficulty in breathing, inflammation and infections that cause extreme damage to the lungs. It also can impair the digestive system, which can lead to malnutrition. Although great advances have been made in the way of treating the symptoms of CF, there currently is no cure for the disease and the median age for survival of CF patients is 37 years old.

As most of you know, my wife, Cammi, battled CF for close to 20 years and just two years ago was the fortunate recipient of a double lung transplant. I have seen firsthand the damage that CF causes and the heavy burden it places on the lives of those affected by the disease. When Cammi’s lungs became so damaged by CF that she had no other viable options, we temporarily moved our family across the country to wait almost a year for a healthy set of lungs for her. Although Cammi’s journey has definitely not been easy, our family has been blessed along the way by the support of family and friends, access to leading doctors and surgeons and the financial means necessary to pay for medical care and relocation costs. I know that not all CF patients and families are so fortunate.

I decided to join Team Boomer to show my support for all the patients and families who deal with CF on a daily basis, to help spread awareness of CF and to raise funds for this important cause that is dear to my heart. We all have challenges we face in our lives and CF is one of the challenges our family has been dealt. I believe it is my moral responsibility to do what I can to support the CF community and to contribute to the efforts to find a cure.

I know that there are hundreds of great causes and that many of you already support several other wonderful charities. I also know that it is impossible to support every worthy cause. For those of you who are willing and able to show your support through a financial donation, please click on the following link or cut and paste it into your browser to go to my fundraising page and make an online tax deductible donation:

http://www.firstgiving.com/fundraiser/lancebrady/2011ingnycmarathon

All donations are secure and sent directly to The Boomer Esiason Foundation by FirstGiving, who will email you a printable record of your donation. For those of you who are unable to contribute financially, I hope that this message will help to remind you of the ongoing battle to end CF and possibly inspire you to participate in a future run, walk or other event for CF that may take place in your local community.

Thank you to all of you for all the love and support each of you has shown our family throughout the years.

All the best,

Lance Brady

Cast your vote for the CFCareForward Scholarship

2011-09-02T10:49:00.001-04:00

The fourth annual CFCareForward Thriving Student Scholarship contest starts today! From now until Sep. 30, 40 exceptional students with CF will compete for public votes to help them win one of two $19,000 scholarships – one for an undergraduate student and one for a graduate student – in honor of the 19^th year of the scholarship program. These students have been selected to receive a $2,500 CFCareForward Scholarship, based on their academic records, creativity, and ability to serve as role models in their community.

Cast your vote!

Place your vote for one Thriving Undergraduate Student and one Thriving Graduate Student:

Online at www.CFCareForwardScholarship.com
By text message at 30364
Via toll-free phone numbers at:1-888-305-9808 (Thriving Undergraduate Student) and 1-888-306-9683 (Thriving Graduate Student)

Feel free to post this information on your blog as you best see fit.

The press release announcing the program launch is pasted below and a fact sheet about the CFCareForward Scholarship is attached. Please let me know if I can provide any additional information.

Best regards,

Kristin

Kristin Sockett | Healthcare

Ruder Finn | 301 East 57th Street, New York NY 10022

ph: 212-593-5804 | sockettk@ruderfinn.com

About CFCareForward Scholarship

Recognizing the financial burdens that exist for many CF patients and their families, Abbott created the CFCareForward Scholarship to honor young adults with CF as they pursue goals of post-high school education. This year, scholarships of $2,500 were awarded to 40 students. Of these 40, TWO students – one Undergraduate and one Graduate Student - will win a $19,000 Thriving Student Scholarship. Over the past 19 years, Abbott has awarded scholarships totaling more than $2.2 million to exceptional students with CF.

_________________________

Abbott Awards CFCareForward Scholarships to 40 Exceptional Graduate and Undergraduate Students Living with Cystic Fibrosis

Abbott Press Release

August 30, 2011

· Two students will go on to win a $19,000 scholarship and the title of 2011 Thriving Undergraduate Student or Thriving Graduate Student following a month-long public vote

· New this year, the Thriving Graduate Student category honors students with CF as they pursue graduate-level studies

ABBOTT PARK, Ill., Aug. 30, 2011 – Abbott has awarded CFCareForward Scholarships totaling $100,000 to 40 undergraduate and graduate students living with cystic fibrosis (CF) for use during the 2011-2012 academic year. Distinguished undergraduate and graduate recipients alike were selected to receive a $2,500 scholarship based on their academic records, creativity and ability to serve as role models in their community. Starting today, through Sep. 30, these students will compete for public votes to win one of two Thriving Student Scholarships, for each level of study, for a total award of $19,000 each, in celebration of the nineteenth year of the scholarship.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. Thanks to tremendous advances in medical treatments, more young adults with CF are living longer, healthier lives than ever before, and increasingly are pursuing higher education. Today, more than 45 percent of people living with CF are aged 18 or older.

"During the past 19 years, we've noticed an impressive progression in students with cystic fibrosis applying for scholarships, including some in medical school, law school and overall graduate-level studies," said Jim Hynd, divisional vice president, Metabolics, GI Care and Dyslipidemia, Abbott. "This year Abbott is excited to expand the scholarship offering with a second award exclusively for graduate students, and we are honored to provide financial support for this stage of a student’s academic career."

Please visit www.CFCareForwardScholarship.com to learn more about the 40 students' remarkable accomplishments and vote for the student you find most inspiring. Votes will be accepted online as well as via text message and phone. Full voting rules and more information on voting options are available on the website. Voting will begin on Aug. 30 and continue through Sep. 30, 2011, and winners will be announced in October.

About CFCareForwardScholarship

Recognizing the financial burdens that exist for many CF families, the CFCareForward Scholarship was developed to honor young adults with CF as they pursue goals of post-high school education. Over the past 19 years, Abbott has awarded scholarships totaling more than $2.2 million to exceptional students with CF.

About CFCareForward

Abbott is honored to continue the nearly 25-year commitment of helping people with CF manage their health. The CFCareForward program provides comprehensive nutritional, educational and financial support for patients living with CF and their families. To learn more about CFCareForward, please call 1-855-CARE4WD (227-3493).

About Abbott

Abbott is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals and medical products, including nutritionals, devices and diagnostics. The company employs nearly 90,000 people and markets its products in more than 130 countries.

Abbott's news releases and other information are available on the company's website at www.abbott.com.

Our Wild West Adventure

2011-08-31T14:42:00.003-04:00

I can't begin to tell you what a great trip we had to Jackson. It has been six years since Scott has been, so we had a lot of time to make up. What did he want to do? HIKE! We did A LOT of hiking. There were so many times I wish I could have yelled out a great big Alleluia! I hiked to places I haven't been in many years as well as to a lake high in the mountains where Scott has wanted to take me, but I have never been able to go. What a joy filled vacation!

Our first day we hiked at the Rockefeller Center. While Dad waited for a parking spot, we toured the visitor center.

The first waterfall you come to.

We had lunch at the lake.

Hannah & Grama Ann

Hannah & Granddaddy

Scott and I love the brick oven pizza at the Snake River Brewing Co., so we had to stop there for lunch one day. Too bad the lighting was difficult for taking these fun shots.

It has been years since I rode the Alpine Slide, so we decided to take a run. It was really fun, but way too Expensive!

We also rode the Gondola up the Mountain at Jackson Hole Ski Resort one evening. Hannah was in awe of what we ski in Jackson compared to here.

In 2000 Scott carried Hannah on his back to Inspiration Point. I wasn't able to make it all the way up with them at that time.

Look at my two cutie patooties...then

NOW!!! At least one of them has changed dramatically!

I am so excited to tell you that 11 years later, I made it to the top of Inspiration Point and beyond. What an awesome post-transplant accomplishment!!!

In Cascade Canyon we ran into this bull moose, it is always amazing to see this majestic animals!

No trip to Jackson would be complete without a Bison sighting. Check out this group.

The Sleeping Indian

One of my favorite childhood places to go is Kelly Warm Springs. We spent one of our relaxing days there swimming and enjoying the beautiful scenery!

The warm springs from above.

The Grand Teton Mountain Range. This view still takes my breath away every time we fly into the valley. It is so unfortunate that I didn't appreciate what I had until I moved away.

Scott's major goal for our vacation was to get me to Goodwin Lake and to take Hannah to the top of Jackson Peak: the mountain you can see off in the distance in this picture...

The hike to the lake is a brutal three mile uphill trek.

The only thing that kept me going was my dad. I got behind him and followed his feet, I tried not to look up at the steep climb, when I did I felt overwhelmed!

What a beautiful hike! The landscape was breathtaking!

Goodwin Lake: The red shirt is Scott.

Hannah on top of Jackson Peak!!!! It is an additional two miles up from the lake.

Making it to Goodwin Lake was a first for me, my dad, and Hannah!!!

What an awesome trip!!! So many incredible memories. Thanks Mom and Dad!!!

We are home...

2011-08-30T10:03:00.002-04:00

Hello! I am sorry I haven't posted sooner. We did get home last Wednesday morning, but unfortunately I have been fighting an awful cold that went from my head to my chest. I have been just laying low and with the help of antibiotics am slowly getting better. I have SO MUCH to share about our trip, just hang tight a little longer.

Please keep me in your prayers as I do all of you! Nancy

Hannah & Zaryan with Hawk Nelson's Bass Player

2011-08-15T09:09:00.000-04:00

Here is the picture of the girls with Hawk Nelson's bass player, Daniel, at Kingdom Bound!

Feis at the Falls

2011-08-14T13:56:00.000-04:00

This weekend was our last Feis of the season. It was in Niagara Falls, NY, and Hannah ended her season with 7 more medals, hooray! Her teacher in Buffalo loved her new solo dress and we purchased a new wig to go with the dress this weekend as well. It was a fun, but long day.

We drove up the night before and were able to walk to the American side of the Falls. Here are some pictures from our weekend!

Hannah in her solo dress with her new wig. Where has my baby gone?

Way to Go, Hannah, three 1sts, two 2nds, a 3rd, and a 5th!

Our next big adventure Irish Dance will be to Oireachtas in November in Philadelphia. Hannah was chosen for a choreography team, which is a big honor. It is a HUGE commitment, practice every Sat. & Sun. (3 hours round trip), but we a thrilled for her.

Tuesday morning we leave for Jackson to see my parents, hooray! I can finally be excited! I will be sure to post pictures when we return! Please pray for our safe travels!

You Might As Well JUMP!

2011-08-11T09:29:00.005-04:00

Rock City

2011-08-10T11:29:00.000-04:00

For any of you who have been following my blog from the beginning, you may remember that Scott and Hannah used to go to Rock City to get away when I was so sick. I was able to visit this amazing place with Hannah's class last year, but this was our first family trip here since my transplant. What a wonderful experience to have them show me their favorite places in this true wonder of nature.

It is never a good sign when you are sitting before you even begin the hike!

At the top of Fat Man's Squeeze

It was a bit tight in there.

Poor Scott, look how apprehensive he looks!

We found some old oil mining equipment.

Check out how hard Scott was working!

Poor little Hannah, she climbed every rock she could, but ended up falling and hurting herself on the flat trail.

She was such a trooper, she didn't cry and didn't want to go back, she wanted to push forward.

What an incredible day!!!!

An Amazing Night!

2011-08-02T18:20:00.003-04:00

When I was in 7th grade my friend Amy and I convinced her dad to drive us to Salt Lake City, UT (6 hours away) to see our favorite band, Bon Jovi. Though we were 500 miles away from the stage (or so it seemed), it was one of the most thrilling experiences of my life! I'll never forget walking from hotel to hotel after the show hoping to get a glimpse of the group.

Last night I got to relive that experience in a totally new way, through my daughter's eyes. Hannah has been in love with the band Hawk Nelson ever since we saw them at Revolve. They were playing at our local amusement park last night for Kingdom Bound, and I decided to take Hannah. She and her friend Zaryan made awesome shirts for the show and we met Zaryan at the park (she was staying there with her church youth group.).

We descended upon the stage at 4:15, hoping to get as close to the stage as possible. The first group to perform was called Hello Kelly. They were awesome! The lead singer has a severe stuttering impediment, but is able to sing, so he uses his singing voice to share his faith. They were incredible!

HELLO KELLY

Here is some footage of Hello Kelly

At the end of Hello Kelly we were able to move right up to the fence that separated the crowd from the stage. We were literally dead center.

The next group we saw was called Manafest. They were a rap group. I kept having to remind myself that they were rapping about God, but they were great too!

MANAFEST

Check out this awesome drum solo.

After Manafest, there was a huge thunder storm, but we kept our spots, even as the rain poured down on us. There was an amazing Christian speaker, Bob Lenz, and we enjoyed his presentation!

The next group was Manic Drive. They were every bit as incredible as the other groups, where were these awesome Christian groups when I was young?

MANIC DRIVE

Finally, after 4 1/2 hours of standing, Hawk Nelson finally came on. I wish you could have seen my normally reserved child come to life when the lead singer, Jason Dunn, stepped in front of her on stage. She screamed, she sang, she jumped, she waved her arms like a crazy girl (and I have to admit, I did all of those things too). They were incredible! They played for 90 minutes with high energy and a catching enthusiasm, and we were almost close enough to touch them (I have never been that close to a band before in my life!). Check out these pictures. No zoom needed.

HAWK NELSON

Here is some video footage of Hawk.

Just when I thought things couldn't get better for Hannah, they did. We stood in line for an hour to meet the band and get their autographs. When we got to the front of the line and the guys saw Hannah and Zaryan's shirts, they were so impressed. They went on and on about how cool their shirts were. The girls were so thrilled! They even got to have their picture taken with the bass player (that is on Zaryan's camera).

What an awesome ministry these groups are providing. I was so impressed with everything I saw! My heart was bursting on the way home knowing that my daughter had just experienced a night she will never forget.

So, standing for seven hours and getting home at 1:30 am was TOTALLY worth it!

Surviving a Double Lung Transplant

2011-07-29T08:39:00.001-04:00

Surviving A Double-Lung Transplant: 'Life Is Good'

by NPR STAFF

Here is a truly inspirational story that is full of hope for those of us who have received transplants.

EnlargeStoryCorps

Nan Graham spoke with her son, Howell, about his recovery from lung-transplant surgery in Wilmington, N.C.

text size A A A

July 22, 2011

As a child, Howell Graham was diagnosed with cystic fibrosis, a genetic disease that often impairs lung function. By his late 20s, Howell would lose his breath doing things as routine as brushing his teeth.

So he underwent a risky operation — in 1990, he had a double lung transplant. And today, Howell, 49, is one of the longest-surviving recipients of that surgery. Recently, Howell and his mother, Nan, talked about a few moments when it seemed like he might not make it.

"I remember waking up from the surgery being on the vent [a ventilator], and seeing this absolutely beautiful brunette nurse," Howell says. "She held my hand her entire shift."

As he recovered, Howell drifted in and out of consciousness. And the next time he woke up, the hospital shifts had changed.

Then, he recalls, "a male nurse came in — this big burly dude," as his mother laughs. "And I was not happy at all."

Howell could not yet speak, as the ventilator helped him breathe. But he had a pen and paper.

"I just was writing notes like, 'Get him the heck out of here,' and 'I don't want this guy. Get me the girl back,'" he says.

"Lots of cursing," Nan remembers. "Lots of cursing."

"Lots of cursing," Howell agrees. "And my dad was tearing up the notes, because he was scared the male nurse would find the notes and kill me. So he spent his time intercepting my hate notes."

"Which is kind of understandable," Nan says.

After a month, Howell was able to leave the hospital.

"And when you got home, things were going well," Nan says.

"Well, things were going fantastic," Howell says.

His recovery was going so well that Howell took his father's 17-foot boat out — "thinking I knew what I was doing," he says.

"I ended up jumping out of the boat. And the boat got away from me, and it's too far to swim. And I really thought I was going to drown."

"Six months out of a double lung transplant," his mother says.

Howell says he was worried — but not just about possibly drowning.

"The first thing that popped in my mind was Dr. Egan, who's kind of a little fireball," he says, "how mad he was going to be that he had given me this transplant — and I blew it just being stupid."

"You said, 'He would have killed me!'" Nan remembers. "And I said, 'He would have had to get in line.' Your father and I would have been the first in line to kill you for this. We worked 28 years; he worked 12 hours."

"Yeah," Howell says.

After his surgery, Howell overcame a ruptured appendix; he is also a colon cancer survivor.

And more than 20 years after receiving his transplant, Howell says, "These are my lungs. And it's pretty amazing to have made it that far out. I've just been a lucky person."

"Life is good," Nan says.

"Life is good," Howell agrees.

Audio produced for Morning Edition by Nadia Reiman.

Solo Dress

2011-07-24T09:40:00.001-04:00

Just a quick post. As you all know, we have been going to A LOT of Irish Dance competitions lately. Well, a few weeks ago Hannah earned all of the first she needs to move up to the next level. Unfortunately, she has to wait until January to do this, but, it does mean she has qualified for a solo dress. We have been looking at dresses non-stop, but finally found the perfect one for our Hannah. I just wanted to share with all of you.

Hannah's New Solo Dress

Hannah loves it and can't wait to wear it for the first time.

God's blessings to you all! Nancy

Queen of the Garden

2011-07-13T19:20:00.002-04:00

As a "retired" woman, I have discovered that gardening truly is a wonderful retirement past time. I love being outside, listening to nothing but nature, planting things and nurturing them until they grow. It is so rewarding, I never knew.

I wanted to share what a great help my sweet Zoey is to me.

She starts out alert and ready to get some work done.

As time goes by, though, her head gets a little droopy.

She tries to keep her eyes open to appreciate the beautiful flowers I have planted.

But by the end, she dozes off and leaves me to work alone.

Don't you love my garden helper?

The Affordable Care Act

2011-07-07T09:00:00.001-04:00

The Affordable Care Act, signed and passed in March of last year, holds many benefits for those both pre- and post-transplant. While you may already be familiar with some of the Act's immediate benefits, it's in your interest to understand how long-term initiatives may improve your healthcare coverage in the future.

General benefits to look for

If you have been denied insurance due to a pre-existing condition—such as a history of transplant or kidney disease—the Act is creating ways to help^1,2:

•	It removes lifetime coverage limits and sets more reasonable annual limits
•	As of September 2010, it eliminated pre-existing conditions as a reason for denying coverage to, or setting high premiums on, individuals up to 19 years of age
•	Effective 2014, it will eliminate pre-existing conditions as a reason for denying coverage to, or setting high premiums on, individuals 19 years and older

Your options until 2014³

Most significantly, the Act has created the Pre-existing Condition Insurance Plan (PCIP)—which may provide you affordable, non–income-based coverage if you've been uninsured or denied insurance for at least 6 months due to a pre-existing condition.⁴

Standard PCIP benefits include primary, specialty, and preventative care; hospitalization services; and prescription drug coverage.⁴ Depending on where you live, these benefits may either be managed by the federal government or the state.⁴ Click the map for benefits, coverage rates, and enrollment details specific to your state of residence⁵:

If your PCIP program is run by the state, you will be offered a single plan by that state; but if it is run by the federal government, you will have the option of selecting from the following 3 plans^6-8:

Be sure to read the 2011 PCIP Brochure and the PCIP Benefits Summarybefore discussing your options with a financial coordinator or PCIP representative.

Your access to coverage is critical to your transplant health. With the help of the Affordable Care Act, you are now many steps closer to ensuring a successful journey ahead.

Congratulations

2011-07-07T08:56:00.002-04:00

I just wanted to say congratulations to the winners of the 100,000 hit contest! Your cookbooks are on the way. Thank you for all of your love and support! Nancy

Can you say spoiled rotten?

2011-07-02T10:30:00.001-04:00

Here is a typical afternoon at our house. Notice who is laying on the dog bed. Completely spoiled rotten! We sure do love our little cat, though, and isn't our sweet Cracker a good sport?

An incredible weekend at Celtic Fling

2011-06-28T08:50:00.003-04:00

Hello! We had a great weekend down near Harrisburg, PA at an Irish Renaissance Faire. Hannah competed in a Feis there and got first in two more dances that she needed, so we only need one more first for her to move up to the next level in January. I thought you might enjoy seeing our pictures!

Here are the girls getting ready to dance.

Look our sweet girl!

This is Hannah and her friend Danika showing off their metals.

The faire was incredible. You literally felt like you had stepped back in time. I wasn't expecting such an elaborate set up.

There were several amazing Irish bands that performed throughout the day. I wish we had more time to watch them.

This gentleman kept asking for Hannah's hand in marriage, we tried to explain she was too young, but he was persistent. He settled for a picture with her instead.

Where else can you go and see this?

I was wishing I had a beautiful period dress to join in the fun!

Another great post-transplant experience!!!

Almost to 100,00 Views

2011-06-27T16:53:00.001-04:00

Hello friends! I have been away all weekend and when I checked my blog just now I realized that it is almost to 100,000 visitors. I can't thank all of you enough for your support and love.

As a special thank you I would like to reward views 100,000 to 100,005. When you log on to my blog, scroll down to the counter, which is on the right; if you are one of these numbers, send me an e-mail with your Name, mailing address, and e-mail. I will send you a copy of a cookbook compiled from the recipes on my cooking blog. Only my close friends and family have a copy, so you will be added to that list of select few.

God bless you for all your years of prayers for me! All my love! Nancy

Ecology Camp

2011-06-21T08:39:00.002-04:00

Last week Hannah got to go to Ecology Camp with her 6th grade class. She had a blast! Friday night she talked and sang our ears off.

I spent the day Wednesday helping out in the kitchen at camp and had the opportunity to snap a few pictures during our short breaks. I wanted to share them with you.

The teacher taught them how to transfer boats if they are in a group. Can you see Hannah moving from canoe to canoe?

It's a race back to the dock! (Hannah and her friend Logan are on the right)

Here they come, a strong 3rd?

Learning about the vegetation and foods for the animals at different times of the year.

I am sure Hannah felt right at home with this talk, her Granddaddy is a great educator about nature!

The tent!!! I don't know about you, but I was certainly glad I didn't have to sleep in it!

Hannah's tent mates, Grace, Rae, and Erin

The 6th grade girls!

I was so glad to have the opportunity to be there that day!

Portville's Alma Mater

2011-06-20T16:24:00.001-04:00

This is Hannah's last week of 6th grade. Today the pre-k through 6th grades had morning program in the park. Hannah and several of her friends were asked to sing the Alma Mater. Here they are:

An Awesome Father's Day!

2011-06-20T13:50:00.001-04:00

We spent our Father's Day Jeepin'! What Fun!

We headed out in the morning for Allegheny National Forest, the Allegheny Reservoir, and the Kinzua Dam.

Hannah was a little chilly, so she bundled up.

Look at my beautiful family!

We stopped for lunch at a restaurant on the reservoir.

Down at the docks there were enormous carp. Several people were feeding them and it was a true feeding frenzy!

Can you see them now?

What about now?

...and NOW?

You could easily pet them, and a couple even tried sucking our fingers off. It was quite a treat for Hannah!

Back into the jeep to head toward the dam.

Watch out, it is a looooooooooong way down!

Here is an action shot, Hannah and me in the jeep.

We found a trail that would allow us to hike to an overlook.

Isn't it gorgeous?

My rock climbing monkeys

They're at the top of the world!

Here is Scott's impression of Hannah who is too scared to jump.

Look how cute he is!

One jump down, one to go.

...MOMMY!

Look at that super mom rescue!

Looking pretty good considering I have a raging lung infection and feel like poop. Life is all about living!

Have you heard of the famous rock shark? I think I got a little too close!

Hannah and Scott DID NOT learn from my mistake.

We had to stop for ice-cream on the way home. Look how Hannah is patiently waiting for her two scoops.

Daddy is in heaven, ice-cream and jeeping, who could ask for a better day?

Snores completed a perfect Father's Day! We are so blessed!

My Irish Dancer

2011-06-14T09:48:00.000-04:00

Another Busy Weekend!

2011-06-13T09:14:00.000-04:00

Hello Friends!

Today is a good day to recover from another busy weekend. We were in Toronto Canada all weekend. Part of the time at a Feis and the rest as tourists.

I haven't been to Toronto in years and I was surprised at how much more built up it is than I remember.

Saturday we were at the feis until early afternoon, than took off to tour Toronto. Unfortunately, we realized on our way into Canada that our GPS does not work there, so we spent most of the weekend lost. I have decided that we have become too dependent on our GPS; I will be sure to have printed directions from now on.

Because we kept getting lost, we decided to take the subway into Toronto. This was Hannah's first time on a subway, that was exciting for her!

We walked around downtown and, of course, did some window shopping at the famous Eaton Center.

Perhaps the most exciting part of our evening came, however, when we realized that the cast of Glee was in town performing live. I really wish we would have know in advance; I would have tried to get tickets. We did walk over to the venue and got to see the line-up of tour buses, Hannah enjoyed that!

On Sunday, we decided to go the the Canadian side of Niagara Falls. Hannah has been to the US side, but not over to Canada. Little did we know that everyone else would be there as well. After sitting in a traffic jam for over an hour trying to find a parking place, Hannah and I decided to jump out of the car and run over to at least see the falls.

By the time we turned around to run back to the car, the traffic had started moving, so we ran a small marathon trying to catch up with Scott. I was never so glad to get to the car, huffing and puffing, and rest my aching legs (running is no longer my forte).

Today will be quiet. Actually, this whole week will be quiet. Hannah left this morning for 6th Grade Ecology Camp, so we will have to live without her all week. This is her first time away by herself and I could tell she was apprehensive. I know she will have a blast with all of her friends at camp and I will see her Wednesday when I go to help in the kitchen for the day; I'll let you know how she is fairing then.

God's blessings to you all! Nancy

As Usual, I am Behind!

2011-06-07T14:24:00.032-04:00

For those of you faithful followers who check my blog regularly, I apologize. I can't seem to keep up right now. That is a good thing, but sometimes I feel guilty about leaving you hanging.

Just a quick update. I had an appointment at UPMC last week. It went well. My FEV1 was 108%, you can't beat that! There is one concern, however, and that is the mucus I have been coughing up regularly. I thought it was just the normal progression of CF into my new lungs. Dr. Pilewski said it is not normal at all. So we have a plan to figure out what is causing it and hopefully get it back under control.

I have several new pictures to share. I love getting a hold of Scott's camera, it gives me a chance to e-mail myself all of his pictures.

First, I have to share these adorable pictures of Zoey. She will be 1 at the end of the month, what a lovely addition to our family she has been!

Next are some recent pictures of Hannah. The water park pics were from her band trip to the local amusement park. The others are from recent dance competitions.

Finally, I found some more pictures from our Mexico trip:

My love to you all! Nancy

Taking Flight

2011-05-19T09:06:00.013-04:00

Hello Friends!

I wanted to invite you to order a wonderful new book that is filled with transplant stories (including mine!). This would be a wonderful gift for anyone who is facing a transplant, it will definitely provide hope.

All proceeds from the book will be donated to the charities of choice of all the contributors, so it will benefit many worthy organizations.

As far as I know, the only place to purchase the book right now is at amazon:
http://www.amazon.com/Taking-Flight-Inspirational-Transplantation-Journeys/dp/1426967314/ref=sr_1_9?ie=UTF8&qid=1305810993&sr=8-9

Can you find me on the back cover?

May is National Skin Cancer Awareness Month

2011-05-18T09:47:00.001-04:00

It's not always easy keeping track of everything you need to consider post-transplant. Did you know, for instance, that skin cancer is the most common type of cancer in transplant recipients?¹ Learning your risk factors for skin cancer early and understanding ways to effectively reduce your risk are important for protecting your long-term health.

What are my risks of developing skin cancer?

The anti-rejection medications vital to the success of your transplant also suppress the natural immune defenses in your skin, putting you at higher risk for skin cancer.² Be sure to discuss your risk factors for skin cancer with your transplant team. If you haven't done so already, ask them for assistance in developing a plan for skin cancer prevention, detection, and treatment.³

Although your anti-rejection medications can increase your risk for skin
cancer, remember that taking them as intended is critical to your health and
that of your transplant. If you have concerns about the risks of long-term immunosuppression, talk to your transplant team. Do not change or stop
any of your medications, unless directed to do so by your doctor.

What can I do to help prevent skin cancer?

The good news is that simple lifestyle changes can significantly reduce your risk of developing skin cancer⁴:

•	Wear a waterproof, broad-spectrum (UVA and UVB) sunscreen with an SPF of at least 30 every day, even when it's cloudy or rainy out. Consider making this part of your daily routine, maybe by applying it immediately after brushing your teeth each morning
•	Make sure sunscreen is applied liberally to all parts of your body, especially areas of high sun exposure, such as the back of your neck, tops of your ears, and back of your hands
•	Wear tightly-woven, protective clothing, such as long sleeves, pants, and hats
•	Limit your exposure by avoiding outside activity between 10 AM and 4 PM, when sunlight is most intense

Because skin cancer develops slowly over time, these steps are only as effective as your daily commitment to them. And like all other aspects of your transplant health, it's critical that you schedule regular skin evaluations with your doctor—every 12 months, or, if you are at higher risk, every 3-6 months.³

What are the signs of skin cancer?

In addition to regular skin evaluations, monthly self-monitoring is highly recommended. Look for the following changes to your skin⁴:

•	New, changing, or scaly growth
•	Pink patches or spots
•	Bleeding spots
•	Changing moles

Fortunately, about 95% of transplant-associated cases of skin cancer are forms of non-melanoma, which are usually curable if caught early enough.^3,4 The other 5% are cases of melanoma,³ characterized by Asymmetry, Border irregularity, Color variability, Diameter, and Evolving growth—known as the ABCDEs of melanoma.⁵ For helpful pictures and additional descriptions of the types of skin cancer, visit the Healthy Body section ofwww.TransplantExperience.com atwww.transplantexperience.com/kidney/body/after/skin.

Skin cancer can be serious, but by learning the signs of skin cancer now, you can seek the early evaluation and treatment key to avoiding long-term complications. Learn more at www.at-risc.org.

A Terrific Second Honeymoon!

2011-05-17T14:45:00.079-04:00

This year Scott and I are celebrating 15 years of marriage. As a special treat, we decided to use some of our tax return and go on a 2nd Honeymoon. What an incredible few days in the Riviera Maya, Mexico!

Our hotel was between Playa del Carmen and Xcaret.

Inside the Hotel

There were beautiful jungle paths throughout the resort.

and Iguanas all over (can you see him in there?)

What a gorgeous beach!!!

This guy hung out on the deck of the grill hoping for handouts.

Scott enjoyed the pool bar.

The snorkeling was amazing. There was a beautiful reef that we could swim to from the beach. I will try to post movies at some point.

We enjoyed napping in the hammocks in the afternoon.

Scott enjoyed hanging out on our balcony.

This was the path to the lobby and buffet.

Unfortunately, when you are in Mexico, they expect you to try a shot of Tequila.

Having never tried Tequila before, I was ready for the challenge...

Can you see the facial expression changing?

I wish there was a sound effect to go along with this picture!

YUCK!!!!

We played Mini Golf on a beautiful little course in the rain forest.

Shopping at the "mall" at the resort.

We took a tour of Tulum. "Tulum, meaning wall in Mayan, was named such when it was discovered and first explored in the early 1800s by Juan de Grijalva's expedition to the area. This fortified Mayan city had been utilized during the Post classic period around 1200-1450 CE. And the site remained occupied until the late 16th century when it was finally abandoned after the arrival of the Spanish.

This ancient walled city was, in its time, a thriving civilization. Originally thought to be called Zama, Mayan for dawn, Tulum was a major crossroads of trade from both land and sea managing trade from Honduras and into the Yucatan. This is evident by the large amount of artifacts from all over Mexico that have been uncovered at this site. Tulum is one of the only fortified Mayan sites and is one of the best preserved coastal sites in all of Mexico."

There were HUGE Iguanas all over Tulum.

Our Tour Guide was half Mayan and half Mexican. His mother is a full Mayan. Tulum was actually called Zama by the Mayans and was and continues to be a Holy City.

In the picture below you can see two of their temples. The main god is the sun and the temple to the son is the one on the left (it was disguised so that if there was an invasion, hopefully it would not be destroyed.)

The large temple in the center was a temple to the earth, and the temple to the moon was to the right, just out of the picture. The full Mayans come to Zama at the beginning of their year and worship and celebrate for 5 days. This park is closed during that time.

Zama overlooks the sea with some gorgeous views. It was never conquered because it had a large stone wall surrounding it (Tulum’s wall for which it is named is 5 meters (about 16 feet) thick and as many as 8 meter (about 26 feet) in some areas and provided the perfect protection for the Mayan people that lived here. )

The sea surrounded the rest and the reef prevented any ships from getting close to the shore.

This was the temple to the moon. They worshiped the moon because they connected it with fertility.

Back at the resort, there was all sorts of things to keep us entertained. One night they had an authentic Mexican band.

And there were shows each night in the theater. This one was a Circus show.

Heaven on Earth!!

What an incredible trip. I continue to be in awe of the health I have been blessed with. While we were snorkeling I kept thinking that I could never have done this before. I had a lot of energy and was able to keep up with Scott the whole time (I did crash when we got home).

Each of us has to LIVE, make sure you do the things you dream of before your health gets in the way!!!

Too busy to post

2011-05-05T08:14:00.003-04:00

I don't want any of you to think that I have forgotten you. God has been keeping me very busy and it seems like the computer is getting less and less of my attention (which is really quite fine by me!). Every day a new project is sent my way and I am just trying to keep up. I have been working diligently on a Second edition illness book. Currently I have added over 50 pages to the original with a lot more in depth information. I am excited to get that done and out there for others to use.

Scott and I are taking off this evening for a romantic second honeymoon. We are celebrating 15 years in June, so we are taking some us time. I'll check in when we return.

God bless you all! Nancy

An Easter Challenge

2011-04-19T10:08:00.000-04:00

Dear friends,

As we approach the anniversary of our Lord's death for us, I have a very special challenge for each of us. In memory of Christ, open yourselves to others this week. Turn away from internal things and look outward. Reach out to others expecting nothing in return. Seek to be Christlike this week in memory of our loving Savior!

May God bless you this Easter and always! Nancy

Revolve Was AWESOME!!!!!

2011-04-11T17:33:00.000-04:00

What an amazing weekend we had. Boy do I wish they had events like this when I was a teenager. There were over 4000 Christian Girls and Moms and we blasted that stadium for two days straight.

Hawk Nelson was the headlining music group, and let me just tell you, they don't play your average Christian music! There were three amazing rock/rap/pop/punk groups and by the screaming of the girls, I would say they loved them!

Hawk Nelson

Brit Nicole

and Group 1 Crew (A Christian version of Black Eyed Peas)

There were fabulous speakers and some really funny skits.

Our group of girls!

I am so thankful Hannah and I were able to attend!

Tomorrow Hannah and I head to Reading, PA for the Revolve Tour, HOORAY!

2011-04-07T09:08:00.001-04:00

Happy Birthday!!!!

2011-04-07T08:59:00.000-04:00

Attention College Students with CF

2011-04-07T08:34:00.000-04:00

CFCareForward Scholarship for Young Adults with Cystic Fibrosis

I thought you would be interested to know that the 2011 CFCareForward Scholarship Application is now available online for the first time at www.CFCareForwardScholarship.com/apply.

For 19 years, this Scholarship has provided financial assistance to exceptional students living with cystic fibrosis (CF). This year, 40 students will be awarded a $2,500 Scholarship based on their achievements, essay and creative presentation submitted with the application. Of these 40, TWO students – one Undergraduate and one Graduate Student - will each be awarded $19,000 for use in the upcoming school year. Students may submit their application through May 27, 2011.

Please take advantage of this wonderful opportunity!

National Donate Life Month!

2011-04-06T09:18:00.000-04:00

I just wanted to remind all of you that April is National Donate Life Month. If you are a recipient, here are some great ideas from UNOS for ways to celebrate.

April 4, 2011

National Donate Life Month -- An Opportunity for Recipients to Express Gratitude and Remembrance

National Donate Life Month, celebrated nationwide each April, presents a wonderful occasion for transplant recipients and their loved ones to express gratitude for the life-giving act of organ donation and remind the public of the need that still exists for many other people.

We encourage those of you personally touched by the transplant experience to share your thoughts with others this month. The opportunities are limitless, but here are some suggestions:

Write a letter, or even just send a card, to your living donor or your donor family.
If you participate in social media (Facebook, Twitter, LinkedIn, etc.), make a post about how your transplant experience has helped you and others.
If you haven't done so already, submit a tribute to the National Donor Memorial Web site.
Seek an opportunity to talk about your experience in your place of worship or a civic/service organization meeting.
Take part in a donor remembrance ceremony sponsored by your local transplant center or organ procurement organization.
Send a letter to the editor of your local paper describing your experience and the difference it has made for you.