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


Tuesday, September 30, 2008

I overdid!

Well, I have been out of touch for a few days because my happy day took too much out of me and I crashed and burned. So, after three very bad days, I am finally getting back on my feet.

Today was a better day, Leslie, Jeff, and the kids came over for lunch and my friends Rose and Haley brought and then shared dinner. These two visits really helped to lift my spirits.
Please continue to send me e-mails with updates about you and your families, I know I have not been good about writing back (I have just been too tired), but I love to get updates about how all of you are doing; it is something I really look forward to each day!
I wanted to share a new Sweet Pea photo. She is sitting with my mom, but I was not allowed to show her (she hadn't completed her beauty routine yet that morning : ) ).
Love to you all. Keep the prayers coming, I really have been needing them! Nancy

Saturday, September 27, 2008

A Happy Day!

Today is a happy day, a joy filled day. Today we got out the Fall decorations, my favorite! Though I am now hurting and exhausted, I can look around and smile at my pumpkins, scarecrows, and oh so sweet witches. It was SO worth it!

I hope you all had a happy day too! Nancy

Thursday, September 25, 2008

Special Visitors

Hello friends!

My last entry was kind of a downer, so I thought I would brighten things up by sharing about my special visits this week.

Our Aunt Jan came for a visit over the weekend. She lives just outside New York City, so it is always a real treat when she comes. I enjoyed her visit very much!

Leslie, Lydia, and Simon stopped over while Aunt Jan was visiting. I always love to see my cute niece and nephew. Lydia was recovering from a bee sting and Simon was into everything (I was informed by Hannah after school that he was not allowed in her room anymore!).

My dear friend Ruth came for a visit yesterday and brought a decadent dessert that even I was able to eat. I haven't felt up to her Wednesday visits in several weeks, so it was a true pleasure to get a hug and catch up.

I already shared that I ran into my friend Betty at K-Mart. So this has been a very social week for me, a great improvement from my hours of sleeping over the last couple of weeks.

The fall weather has been just beautiful and the leaves are changing. This has always been my favorite time of the year and I have my scooter charging hoping one of these afternoons I will feel up to going for a ride.

Each day is a new adventure, sometimes good, sometimes not so, but I continue to try to enjoy the little blessings God continues to bring me! Nancy

Tuesday, September 23, 2008

"Eloi, Eloi, lama sabachthani?"

"My God, my God, why have you forsaken me?"

In the last few days, Jesus' words from the cross have come to me over and over. How I want to cry out these very same words, even though I know, as Jesus certainly did, that I have not been forsaken; my God is with me always. Our human minds cannot possibly grasp the greatness and perfection of God's plan and often circumstances in our lives seem too difficult to bear, yet we must fight on.

I received some discouraging news today. My dear friend Betty has been diagnosed with a brain tumor. Though she is not sure if it is malignant, it is certainly a possibility we must all face. She was kind enough to share this news with me herself, and was so calm and at peace as she told me.

Any of you who know Betty realize that she is a true angel on earth and a woman of great faith. Even before our friendship blossomed, she always sent me cards when I was sick or in the hospital. That has been one of her amazing ministries, sending cards with words of encouragement to those who need them.

Betty is the one who encouraged and inspired me to write A Journey Toward Spiritual Peace. An amazing author herself, she was willing to listen to my ideas, read my drafts, and give me kind, but honest criticism. I have been so blessed by her friendship and always smile when I see the subject: Friend Stuff in my e-mail inbox because it is a message from this lovely lady.

Betty has sent so many prayers to heaven for so many worthy people and I ask you now to pray for her and her family. Though Betty is at peace with where she is, it is not easy for family members to accept our failing health.

Please, be with this wonderful family, Lord, bring them comfort, peace, and encouragement. Bring Betty the physical strength to handle whatever medical struggles may come and the continued peace of knowing she is in Your hands, loved and protected.

I hope you have listened to the words to my latest blog song, Anyway, by Martina McBride. My friend Rose sent me this album (specifically for this song) during one of my emotionally low times and its words helped me...

"God is Great, but sometimes life ain't good,
and when I pray it doesn't always
end up like I think it should,
but I do it Anyway!"

I have often shared with you times when God has truly intervened in my life. After I spoke with Betty this morning, I was feeling so sad. I have been putting off getting my Driver's License renewed, (the dreaded trip to the DMV!) but decided when I woke up from my nap that I had to bite the bullet. Mom took me to the DMV (Which was surprisingly quiet with no wait time, thank you God!) and then we had to stop at K-Mart to pick up some prescriptions. I didn't feel up to going in with her, so I stayed in the car, and I couldn't believe my eyes when Betty and her husband Eric pulled into a spot close to ours. I haven't been able to see Betty for a while, with both of our health issues, and have missed her smiling face. I was able to climb in the car and visit with her for a few minutes until my mom came back and it helped my sad heart so much! (Thank you, God!)

God is GREAT, but sometimes life ain't good... but we need to keep living Anyway!

All my love! Nancy

Monday, September 22, 2008

Promising New Technology


I hope you all had a wonderful weekend.

I wanted to thank those of you who have contacted us regarding the Buffalo news report about a new device that was used with a man with CF at Women and Children's Hospital in Buffalo (WCHOB).
I actually was aware of the Medivent RTX, the doctor who worked to get this technology for the man in Buffalo, Dr. Joseph Cronin, has been my doctor for years. He had contacted Dr. Pilewski regarding this device for me and once it has been approved by the FDA, it may be an option that could assist me while I await transplant. I have attached a video (at the end of the posts) that explains how the RTX works (make sure you pause or stop the music player before you watch the video so you can hear it). I currently use a VEST, which offers a percussive treatment similar to that shown in the video.

I want to congratulate Dr. Cronin and the staff at WCHOB on a job well done! He has always been so good at keeping up with all of the newest studies and technologies to assist those of us with CF and I have benefited greatly from his passion for improving the lives of his adult CF patients!

I am pasting the article below for those of you who did not get a chance to read it.

Celoron man first in the nation to benefit from new breathing device
Women and Children's Hospital highlights sophisticated new approach
By Henry L. Davis

Most people don’t think about breathing unless something goes wrong. Tyler Blake and others like him don’t have that luxury.

Born with cystic fibrosis, Blake has lungs that fill with thick, sticky mucus, making respiratory problems a constant issue and potential threat to life. Recently, a hole developed in his lung, and air began to leak into the chest cavity. He deteriorated even though doctors tried everything in their arsenal, including multiple chest tubes, surgery to remove damaged lung tissue and constant reliance on a mechanical ventilator.

But Thursday, a grateful Blake sat quietly at a news conference in Women and Children’s Hospital, as the medical staff explained the extraordinary steps they took to save him — including getting federal approval making him the first patient in the nation to benefit from a new treatment. “I wouldn’t be here if not for that device,” said the 26-year-old resident of Celoron, near Jamestown.

He was referring to a machine a few feet away about the size of a desktop computer that uses a novel technique called biphasic cuirass ventilation to help patients breathe. That’s a fancy way of saying that, unlike a typical ventilator that pushes air into the lungs through a tube, this non-invasive device fits like cushioned body armor around a patient’s chest and externally supports natural inhalation and exhalation.

Studies suggest it can be an effective alternative to or complement a breathing tube for people with respiratory failure, such as those with asthma and chronic obstructive pulmonary disease.
The technique senses and responds to a patient’s breathing efforts. For cystic fibrosis patients, who have just as hard a time breathing out as in, the device also helps bring up the phlegm that clogs their airways.

Blake was admitted to the hospital July 8 and underwent one treatment after another without making much progress. The situation began to grow desperate. “He was getting sicker and sicker, and less likely to tolerate more procedures. We felt we were nearing the end of what we could do for him,” said Dr. Joseph Cronin, director of the hospital’s adult cystic fibrosis program.

The Medivent RTX is available in Europe but awaiting approval by the Food and Drug Administration for use in the United States. Cronin, who was familiar with the technique’s results in other countries, applied to the FDA for special “compassionate use” of the device.
Medivent International in London, England, loaned Cronin and his colleagues a machine; the hospital agreed to let them try it; and the FDA gave its go-ahead for just this one patient, the only one in the United States.

With everything in place, Cronin initiated the therapy Aug. 18 in combination with a standard ventilator. “The change was dramatic within 24 hours,” he said. It allowed the staff to wean Blake off the invasive breathing tube. That, in turn, allowed Blake to eat solid foods and sleep more comfortably. Within two weeks after treatment, previously necessary medications were discontinued, and his chest tube was removed.

The device is considered an alternative or complement to standard ventilators and their complications for a number of conditions, including asthma, pneumonia and Duchenne muscular dystrophy. For cystic fibrosis patients like Blake, it also can serve as a bridge to a lung transplant. “The RTX is very versatile. It could change how to treat patients with respiratory failure,” Cronin said.

An estimated 30,000 children and adults in the United States suffer from cystic fibrosis, according to the Cystic Fibrosis Foundation. With advances in treatments, many people with the inherited disease now live into their 30s, 40s and beyond.

Medivent expects FDA approval of the device within a few weeks, officials said.

Friday, September 19, 2008

Meet the Teacher

I am so happy to be able to let you know that I was able to attend Meet the Teacher night at Hannah's school yesterday. Though it took A LOT out of me, it was so worth it! Hannah's new teacher, Mrs. Bowser, seems wonderful. It was obvious she is excited about teaching and makes it fun for the students.

We got to see Hannah's locker (4th Graders get their own locker!), her desk, some of the projects she has already completed, like her dream home (boy, I would love to see the price tag to build that creation!), and the brand new playground that we have been hearing tons about.

It was also wonderful to see so many familiar and smiling faces from the Portville Community. Everyone seemed genuinely happy to see me and that really made my night! We are so blessed to have a terrific school and community.

I hope you have all had a wonderful week and can enjoy a relaxing weekend! Nancy

Thursday, September 18, 2008



Well, I think I am officially all slept out! After sleeping 20 hours on Tuesday, you would have thought I would be energized yesterday, yet I woke up tired and slept even more. I did start the IVs yesterday, and though it may be wishful thinking, I do think I am feeling a little better this morning.

This evening is Meet the Teacher night at Hannah's school. I am really hoping to be able to go. Hannah had to make a terrarium that is due this evening at the event. What a great project! She and her friend Taylor had the best time gathering plants, rocks, flowers, leaves, etc. to make their terrariums, then Scott helped them put everything in big plastic containers. I love it when the kids can learn something and have fun doing it!

Hopefully I will be able to let you all know what a great time I had meeting Hannah's teacher tomorrow! All my love! Nancy

Tuesday, September 16, 2008

Medical Update


It has been a rough day, I am really not feeling very well. I got up at 9:30, did my treatments and ate a little breakfast, then went back to bed at 10:30 and stayed there until 5:45. Luckily, they are going to put me back on IV antibiotics, so I should receive the new supplies tomorrow and hopefully start to feel a little better. Hannah is also sick, so I am trying to keep my distance, as difficult as that is.

On a positive note, Jasper and Sweet Pea have finally decided to like each other, hooray! They are so cute sleeping and playing together!

Monday, September 15, 2008

Hurricane Ike

Our Hickory Tree before....
and after.
Last night Hurricane Ike BLEW through Western New York.

As I lay in bed listening to the wind whipping outside, my heart went out to those in Texas and the South who continue to be hit year after year with these strong hurricanes.

Having family and friends in Louisiana, Mississippi, and Texas, I know the hardships these horrible storms cause.

We lost the top of our beautiful Hickory Tree last night in the storm and it was very sad to look out and see the damage this morning. I can only imagine what it must be like to return to a community that has been ravaged by a hurricane or tornado, or to wake up the morning after and realize your home is gone.

For those of you in the South, please know my thoughts and prayers are with you and all of your family, friends, and neighbors.

No medical news yet...stay tuned.

All my love and prayers! Nancy

Sneak Peek

My new book is in the process of being edited and reviewed, but should be ready for publication soon. For a sneak peek, check it out at my website: .

Saturday, September 13, 2008

Home Again

Hello! We got home from Pittsburgh yesterday afternoon. Between the humidity and the travel, I am shot, but am glad we had another safe trip!

I wanted to introduce you to Kelly. She is the nurse coordinator at Dr. Pilewski's office and she has been SO GOOD to me! I have had the good fortune of having wonderful nurse coordinators, like Carol Wood during my Salt Lake days and my good friend Jeanne Smith at Women and Children's Hospital in Buffalo. I don't know if these ladies always get the credit they deserve, but they are the ones who have really kept me going all of these years and they deserve so much thanks and credit for a job WELL DONE!

I was hoping to be able to post a picture of Dr. Pilewski, but due to scheduling conflicts, I was only able to see him briefly on Thursday. Hopefully next time I can share his picture with you.

I was only able to see Julie for a few minutes yesterday morning before we left. She is hanging in there and it was good to see her and her mom!

I hope you all have a wonderful weekend. I will check in on Monday when I have news about the updated labs.

All my love! Nancy

Thursday, September 11, 2008

Update from Pittsburgh

Just a quick update. We had our appointment today and I really don't have anything new to report. They took some more blood and got a sputum sample, once those results come back, Dr. Pilewski will decide whether or not to put me back on IVs. I should know more by Monday.

May we all take a moment to remember those who died on 9/11. Scott and I were discussing how much has changed since that fateful event. Remember the sense of community, the outpouring of love, and the national pride we all experienced? Cars and homes were flying our American flag and people were proud to call the USA home. It is unfortunate it took such a horrible disaster to make us all realize how lucky we are.

With the upcoming Presidential election, it is often difficult to remember, we are not Democrats, Independents, or Republicans, we are Americans, and we need to stay united despite our differences.

May God Bless the USA!!!!

Wednesday, September 10, 2008


In case any of you didn't believe the claims I made in last night's post, my wonderful husband was quick to provide picture proof this morning before he left for work. The following photos, though embarrassing do prove the following things:

1. I sleep A LOT and through just about anything (screaming children, booming thunder, my mom putting away the dishes...)


2. Sweet Pea not only adores me, but is my snuggle buddy in bed.

I hope this lays to rest any doubts you may have had about my twisting of the truth or exaggerating. : )

Love to you all! Nancy (We all have to try to keep a sense of humor, don't we?)

I had to include this cute picture of Hannah taken this morning. She absolutely loves 4th Grade, Hooray!

Tuesday, September 9, 2008

A Sweet Pea Update

So many of you have been asking about Sweet Pea, I thought I should certainly give an update. As you can see, she no longer has her lampshade on and her boo boo has healed nicely. Thanks to her, I HAD to get out of the house today to take her for her shots, poor baby; I've never heard her cry like that, it broke my heart!

As you can see from the pictures, she is my lap buddy a lot of the time, my bed buddy at night and in the afternoons, and all of the rest of the time a little menace (at least that is what our two boys, Cracker and Jasper, would tell you). But we all love her very much!

I continue to sleep A LOT, it just doesn't seem like I can get enough rest. The good news is, I am still infection free and I am going on two weeks without IVs, boy my little body is fighting for all it is worth, GO ME!

Although I am looking forward to seeing my friends in Pittsburgh on Thursday, I dread the trip, knowing how much it will take out of me. I am hopeful Dr. Pilewski might have some ideas to help with my exhaustion and nausea; my quality of life just keeps deteriorating.

Just keep those prayers coming, they help me more than you could ever know!

All my love! Nancy

Sunday, September 7, 2008

I hope you have a GREAT week!

Hello friends,

I am so excited to be able to post a video of Hannah dancing. She performed with the Olean Area Irish Dancers over the weekend at the Irish Festival here in town. I did not feel well enough to attend, so Scott took some video with our camera. I had no idea I could actually post this, but started playing and there it was. I hope you enjoy watching her dance as much as I did!

I hope you all had a relaxing weekend and are ready for the start of a new week. Don't forget to live well this week, for me, but more for YOU!!!

Love you all! Nancy

Friday, September 5, 2008

A positive spin?

Hello friends!

I have been trying to think of a positive way to explain how I have been feeling this week, but I honestly just don't know how. All I can think about is sleeping, from the moment I wake up until I go to bed at night. I have been trying to make myself stay awake for small stretches during the day, but this has almost become painful. I realize my body needs sleep now in order to maintain the energy to fight on its own, but it is discouraging to sleep each day away, especially when the weather has been just beautiful.

I do a lot of praying, especially for others who I know are suffering. This gives me a purpose and a distraction from my own struggles.

I would ask each of you to live for me, today, tomorrow, and next week. Enjoy the things you are able to do. Appreciate EVERYTHING, even that trip to the grocery store and cleaning the bathroom. What I wouldn't give to do those things again!

Please do not feel sad for me, I am living the life I have been given and will continue to fight until it is my turn to join my heavenly Father. I know there are two kinds of miracles that could await me, one of them will bring earthly life, but the other will bring eternal life; either way, I will continue to be greatly blessed!

I love you all so much! Nancy

Wednesday, September 3, 2008

Hello my friends! As you can see, I have learned a few new blog tricks (adding music and a slide show). I would love to tell you I did this for all of you, but I really did it for me. I have been VERY tired and could be sleeping all of the time, but have tried to keep myself awake for stretches of time and this was one of the things that kept me busy. I so enjoyed putting together the slide show, and I actually added photos today. I have had such a wonderful life, so far, with so many loving people to share memories with. Watching the pictures go by brought me a lot of joy and peace.

I had blood work done yesterday, and my white count, though climbing, is still okay, so we are going to continue to hold on new IV antibiotics. This is good, yet hard on me, because without the IVs to help, my body is fighting so hard it can barely function. We go back to Pittsburgh next week, so hopefully I can at least stay infection free until then.

Hannah had a wonderful first two days of school. She really likes her new teacher and it seems like she will have a terrific year!

Love to you all! Nancy

Tuesday, September 2, 2008

Hannah's First Day of 4th Grade

Hannah headed off to her first day of 4th Grade. She seemed very excited this morning when she left for the bus stop. It is hard for me to believe she is in the 4th Grade, time goes too quickly!

Yesterday, Scott asked me to go for a ride on his motorcycle with him. I don't remember the last time I rode and honestly didn't feel well enough to go, but knew it would make him happy. I took a pain pill, strapped on my oxygen, and we hit the road. I am so glad I went!

It was a beautiful day, there was very little traffic, and we rode on some of the most lovely wooded back roads in our area. I felt so alive. While we were on that bike, all I could do was drink in the wonderful surroundings, feel the wind wash over me, and thank God for all that He has given me. I forgot how sick I have been feeling, how tired, how low, and basked in the glory of the day and the feeling of my husband close by and protective. I never wanted that ride to end.

Please, take the time in your own lives to find that release; to escape from your everyday cares and worries and just enjoy life and living! It will bring you a renewed sense of energy and strength to face the struggles of tomorrow.

Love to you all! Nancy

The Miracle of Transplantation

Pause the music player before watching.