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

Welcome friends and family!

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

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

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

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

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

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

May God Bless You with Miracles in Your Life! Nancy


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Friday, July 30, 2010

New Transplant Video

I hope you noticed the new video at the top of my blog.  I have been working on ways to introduce my story at presentations and created this video.  I would love to know what you think, please write to me with comments, suggestions, or ideas.  I would really appreciate it!

Thanks, and enjoy my new video!  Nancy

Pretty Proud of My Flowers

A few weeks ago I shared some pictures of my newly planted garden.  Now several of the plants are blooming.  I am so excited to see them all doing so well!  Just one more reminder to be thankful for all of the beautiful things God has made for us!

The center bunch of flowers I grew from seeds.  It is so amazing to me to see these plants full grown, when at the beginning of the summer there was nothing.


I also planted seeds by the back porch.  This is what has grown.


What a wonderful and rewarding experience this has been!

Thursday, July 29, 2010

Josh Wilson: Before the Morning

I absolutely love the song Before the Morning by Josh Wilson.  It speaks to me in a very deep and personal way.  I recently found this YouTube video that explains Josh's inspiration for this song.  It is a very moving story about the power of putting your faith and trust in God and watching the miracles that will spring forth from your faith.

Congratulations to my Nephew

My nephew, Kevin, just graduated from secondary school in Germany.  They have a different educational system than the US.   All German children enter in the same program, but at the age of 10, they go to one of four types of schools.  From grades 1 through 4 children attend elementary school (Grundschule), where the subjects taught are the same for all.  Then, after the 4th grade, they are separated according to their academic ability and the wishes of their families, and attend one of three different kinds of schools: HauptschuleRealschule or Gymnasium.

The Hauptschule (grades 5-9 in most German states) teaches the same subjects as the Realschule and Gymnasium, but at a slower pace and with some vocational-oriented courses. It leads to part-time enrollment in a vocational school combined with apprenticeship training until the age of 18.
The Realschule (grades 5-10 in most states) leads to part-time vocational schools and higher vocational schools. It is now possible for students with high academic achievement at the Realschule to switch to a Gymnasium on graduation.
The Gymnasium (grades 5-13 in most states) leads to a diploma called the Abitur and prepares students for university study or for a dual academic and vocational credential. The most common education tracks offered by the standard Gymnasium are classical language, modern language, and mathematics-natural science.

The track that students enter determines which type of school they can next enter and, finally, whether they will go to a university or enter a technical field or trade.

Several weeks ago Kevin was studying very hard for what we would consider final exams.  In Germany these are called Abitur.  The Abitur (pronounced ab eh tour) is a crucial examination that German students take to get into a University. They take this week long test at the end of their 13th year.   If they pass the Abitur they receive a maturity certificate that let's them into a University.  If they fail, they only have a few more chances to pass or they won't be allowed to attend a University.

Kevin must have done very well on his Abitur because in 6 weeks he will be going to University to study science and Physics.  I am one PROUD Aunt!!! 

Here's Kevin on Graduation Day


Here is Kevin with his three closest friends


Congratulations, Kevin!  I sure do love you!

Wednesday, July 28, 2010

The Creativity of Children

Hannah had a sleep over several weeks ago and the girls spent hours videoing this fun sequence.  It has taken me too long to put together for them, but it is finally finished.

Check out Hannah, Amber, Mary, and Becca in Annoying Water Balloons

video

Twilight: The 'Eclipse of God'

Twilight: The 'Eclipse of God'




Tuesday, July 27, 2010

Upstate New York Transplant Services = UNYTS

Hello!


I have been wanting to share my new volunteer opportunity with you, but things have been so busy, I just haven't had a chance.  A few months ago I applied to be a volunteer for Upstate New York Transplant Services, UNYTS.  UNYTS is an Organ Procurement Organization (OPO) that covers the 8 counties of Western New York.  


There are 58 OPOs in the United States and their job is to evaluate potential donors, discuss donation with families, arrange for the surgical removal of donated organs or tissues, preserve those organs, and arrange for their distribution according to national organ sharing policies.  In addition to this, UNYTS also runs a community blood bank, offering a lower cost alternative for area hospitals regarding blood purchasing.


I have completed two trainings so far, the first was the initial volunteer orientation and the second was a speaker training.  UNYTS has a Talk it Up Program that provides speakers to schools and other organizations to educate about organ, eye, and tissue donation.  Since I am already very active in educating about transplant, this program seemed like a natural fit.  I am scheduled to do my first presentation at the end of August to a local business.


The thing I am most excited about, however, is the Donate Life Program that is run by UNYTS.  Donate Life assists groups of students at area high schools in the planning, development and implementation of a campaign to increase awareness about organ, tissue and blood donation among their peers. Students involved in the group at their school have an opportunity to develop leadership and communication skills and acquire a working knowledge of multiple aspects of establishing and managing an organization. Involvement in Donate Life provides students with skills they can apply in future academic and work-related activities.

Components of Donate Life are:

  • Donation education – Representatives from UNYTS explain the facts about organ, eye, tissue and blood donation and correct common misconceptions.
  • Research – An expert from UB explains to students how the effectiveness of their campaign will be measured through surveys.
  • Public relations & campaign development – A representative from UNYTS will assist students in the development of ideas and campaign implementation.
  • Leadership and public speaking – Donate Life group members will participate in presentations in front of their peers, school staff and their parents.
There are many Donate Life Clubs in the Buffalo area, but none here in the Southern Tier, so I will be working with UNYTS to establish clubs here in our area.  This year, for the first time, UNYTS is starting clubs within some local colleges.  I suggested St. Bonaventure as a good choice, so we will be meeting with faculty from SBU next week to discuss the implementation of a Donate Life Program at SBU for the Fall.
I am so excited to be helping such an amazing organization and will keep you posted as to how everything is going.  If you would be interested in volunteering for an Organ Procurement Organization in your area, I would highly recommend it.  You do not have to have any personal experience with donation or transplantation to volunteer.  To find an OPO in your state, clink the OPO link at the top of my blog.


Also, if you are interested in being an organ, eye, or tissue donor, make sure you fill out a donor registry form for your state.  The NYS Enrollment Form looks like this:

In New York State this is a legally binding document recording your wishes.  It is imperative, however, that you discuss these wishes with your family!

One of the issues I was unaware of was that tissues can be used even after cardiac death has occurred.  For organ transplantation, the donor is declared brain dead, but the body is left on a respirator, allowing oxygen to continue to maintain the organs.  For tissue and eye donation, the body can be without cardiac or respiratory activity.  So, the following can be donated in each type of death:

Brain Death                                                                             Cardiac Death

Donor is maintained on ventilator                                       Donor has no cardiac or 
and the cardiac output is maintained.                                respiratory activity.

Acceptable Donations:                                                           Acceptable Donations:

heart or heart valves                                                             heart valves
kidneys                                                                                     bone
liver                                                                                           ligaments
pancreas                                                                                  tendons
lungs                                                                                         cartilage
intestine                                                                                   skin
bone                                                                                         veins
ligaments                                                                                fascia
tendons                                                                                   middle ear
cartilage                                                                                 corneas
skin
veins
fascia
middle ear
corneas 

Just imagine the gift you could give to numerous individuals by being a donor!

For more information regarding UNYTS, visit their website at www.unyts.org


Our commitment is to enhance and save lives through organ, eye, tissue and blood donation while maintaining respect for those who give the Gift of Life

Friday, July 23, 2010

Friendship

Something I was reminded of in a BIG way while I was in Jackson was the power of friendship.  It can and does last the test of time.  Your true friends know and love you for who you are.  No matter how much time goes by, or how we change, they still SEE us.

These are two of my best high school friends, Jenny and Amy.  We were a part of a group of 5 girls who hung out and did everything together.  We all shared values, went to the same church, and loved each other dearly.  We also all went separate ways for college, distances from each other.


Every break we would get together and continue our awesome friendship.  And through the years, that friendship hasn't changed.  When we're together I feel like we are in high school again, no time has even passed.  To me, that is a sign of a really good friendship!

We had the opportunity to reconnect in Jackson and it was truly a homecoming for me.

Here we are, 17 years later, yet feeling like we saw each other yesterday.


And look at our beautiful children, the next generation of friendships to come.


Debbie and Amy, you were greatly missed, but not forgotten.  We love you both!


A UPMC Super Hero!!!

This is Paul, my pre-transplant coordinator.  I don't know if you can tell, but he is the sweetest, most compassionate man!  He was SO good to me during all those months of waiting.

He truly is a SUPER HERO.  Fighting every day to save lives and doing an EXCELLENT job at it.  Thank you to all the Paul's out there who are giving those of us with terminal conditions HOPE for a future!


My love and friendship to you all!  Nancy

Tuesday, July 20, 2010

An Important Message from the CF Foundation

Help Push the Clinical Trials Bill Over the Finish Line: Visit Your Representative in Your Community


YOU can help more people participate in CF clinical trials, increase awareness of CF, and foster relationships between members of the CF community and Congress by signing up for Make Every Breath Count, the CF Foundation’s third annual national advocacy campaign. Once you register, your State Advocacy Chair or a Foundation staff person will give you the tools and support you will need to meet with your members of Congress.


On Thursday, June 24, two dozen teens from all over the country came to Washington, DC to advocate on behalf of their siblings, cousins, and friends with cystic fibrosis.


Thanks to the combined power of your efforts and the advocacy of these teens, 14 additional members of Congress signed on to cosponsor the “Improving Access to Clinical Trials Act” within days of the event, with more working to join the legislation soon.

Your calls, emails, letters, and meetings are working! Please keep up the pressure by:

Registering for the Make Every Breath Count campaign.

Calling and writing your senators about the clinical trials bill, and, ask your friends, family, and co-workers to do so as well!

You can help ensure new therapies for CF and other diseases move swiftly from the research stage into the hands of patients who need them.

Thank you for your support!

Mary B. Dwight

Vice President for Government Affairs
Cystic Fibrosis Foundation
(800) FIGHT CF
publicpolicy@cff.org

Friday, July 16, 2010

UPMC

Okay, my final post for today and I think I am all caught up.  We drove to Pittsburgh last Sunday and had appointments on Monday and a Bronch on Tuesday.  My appointments went GREAT!  I got a new record on my Pulmonary Function Tests, my FEV1 was 109%, I was SUPER excited!  I got to see Dr. Pilewski which is always a treat, what a sweet man he is!

I also had an opportunity to meet a friend that I met on this blog, Crystal, who is preparing for transplant.  We caught her before her transplant orientation.  It was great to give her a hug and reassure her that things will get better. 

While I was there I popped into the orientation class and briefly shared my story.  It was really neat to tell the people in that room about what they had to look forward to.  All of them are in a really scary place right now and I hope I gave them a glimpse of hope. 

We also stopped by my pre-transplant coordinator Paul's office.  He gives the best hugs!  It was awesome to see him, he promised he's send me a picture of the two of us from our visit to share.

My bronch showed NO REJECTION!  So it was a successful visit to Pittsburgh for me.

Phew, I am tired.  Looking forward to a quiet weekend to relax.  My love to you all!  Nancy

Rochester

We had a great trip to Rochester last weekend.  My mother-in-law was able to come along to experience her first Feis and Scott's and my nerves.  Hannah had a rough feis due to not practicing while we were in Jackson, but still walked away with three 2nds and two 5ths.




After the Feis, we visited Scott's Rochester cousins, the Matthews.  Jeff, Jennifer and their kids were wonderful hosts and served a delicious cookout.  Jeff's brother Bret and his family also stopped by.  It was great to see all of the kids, it is hard to believe how big they are getting!




I got another special surprise.  Jennifer had connected me with a mother of a child with CF and we were finally able to meet.  The gorgeous little girl in black is Julia.  She is 3 and she has CF too.  It was nice spending time with her and her mom, Caren!


A party just isn't a party without a slip and slide!





What a wonderful weekend!

Our last day in Jackson

I already feel like it was a lifetime ago that we were in Jackson.  Is it really possible that we flew home just a week ago?  So much has happened since we got home that I have just gotten lost in the shuffle.

I thought you would like to see our last day in Jackson...

We celebrated my nephew, Brian's, Birthday with a cookout, cupcakes, and movies for the boys and girls.







I think he liked the Wii game we got him!


The kids enjoyed their last day together playing and enjoying the beauty of Jackson (or at least I'd like to believe they were enjoying that view, but we are talking about children.)




Our dear friends the Tallbergs came for a visit.  I haven't seen them since my wedding 14 years ago.
Meg and Eric have been in my life since I was a baby.  Their daughter, Gretchen, was my very first friend.
It was so incredible to see them both looking so well!


While the boys went to Toy Story 3, the girls FINALLY got to see Eclipse.  It was well worth the wait!


Before bed the kids made s'mores and enjoyed a relaxing evening in the Tetons.





This trip home was truly the pinnacle of my transplant experience.  It was the first time in years that I could enjoy my Teton Heaven without exhaustion, nausea, and difficulty breathing.  I appreciated every moment, giving thanks to God for all of the gifts He has given me.

I can't wait to return next summer with Hannah and Scott,
 to wonder at all that I can do thanks to the gift of my donor!

Christina and Ali Move into the Semi Finals!!!!

These two girls give me the chills every time I see them perform.  They aren't letting CF stand in the way of their dreams.  Hopefully, you all know by now, that is my message.  Never let anything stand between you and your dreams!

I am so excited for Christina and Ali because I loved to sing when I was their age.  Yes, it isn't easy to sing when you can barely breathe, yet there can be such great joy found in song.  I miss singing, all of tubes shoved down my throat have pretty well destroyed my singing voice, so, Christina and Ali, I'll live vicariously through you.

Please continue to support these lovely sisters.  I recently found out they are from Idaho Falls.  That is where my parents took me for all of my CF appointments, the Salt Lake doctors had a satellite clinic there, so I am very familiar with their home.

Next stop, FINALS!

Friday, July 9, 2010

We're Home!

Just a quick post to let you all know we arrived home safely yesterday afternoon.  What a wonderful trip!  It was so terrific spending time with my niece and nephews.

We leave for Rochester today for an Irish Dance competition, then we will head to Pittsburgh on Sunday for appointments at UPMC.  Please pray all goes well!

I'll be in touch in a few days!  All my love!  Nancy

Tuesday, July 6, 2010

We have been having the BEST time!

Meeting the Carruth kids at the airport.



According to the kids I drank A LOT of coffee, but what do you expect after only 2 hours of sleep.


We had a three hour layover in the Salt Lake airport.  
The kids were good about keeping themselves entertained!




Arriving at the airport in Jackson.



Mom and Dad's house, what an awesome sight!




We took a hike to Phelps Lake.  It was so awesome to hike in Jackson again!



Hannah, Amber, and Brian


Hannah and Amber have been best friends the whole trip,
how fun to have a cousin so close in age!


My Dad and Me


Burr, the lake was COLD!  But look at those crazy kids anyway.


What a beautiful day!



My rock climbing monkey!


Sweet Amber!


We saw a lot of animals, a bull and cow moose, antelope, deer, elk, bison, chipmunks, ground squirrels, marmots, and a snake!






The Grand Teton Mountain Range


MY three girls!


Amber, Brian, Grama Ann, Mikey, Granddaddy, and Hannah


This is Mt. Moran, Scott's favorite mountain, so I wanted a picture of Hannah and me here.



We spent the day in Yellowstone!


The kids enjoyed watching Old Faithful erupt.



The four cousins at the geysers.





The wind was whipping in Yellowstone and we told the kids to hold their hats tight, but, of course,
whose hat flew off into the geyser field?  Hannah's.  We had some tears until I assured her we would get another one.



We went to the Bar J Chuckwagon for a wonderful authentic chuckwagon meal
and a great show!






Downtown Jackson.



Grama Ann bought the girls matching shirts and jackets.  They loved being twins!


4th of July!  We went to Teton National Park for a picnic, hike, and swim in String Lake.






Hidden Falls.


Mom and Me!


Hannah loves to rock climb.  She literally ran to the top of these rocks!








Look at those hikers!




We had to take a boat across Jenny Lake to get to the hiking trail.  Here we are on our way back.


When I was a kid we loved to swim in String Lake.  We must have been cold blooded because I never complained about the cold.




We met my second parents here in Jackson, Judy and Dick, and headed to the fireworks!  They were spectacular!


Judy, Mom, and Dick


The only jacket I could find to wear was my high school letter jacket, that brought back memories!


On Monday I took the two girls for a girls' day.  We headed up into the Granite Canyon to Granite Hot Springs, a favorite childhood place of mine.









I got a wonderful surprise.  One of my best girlfriends from high school was there.  It was terrific to see Marybeth again!  I also met two girlfriends for a picnic one of the days, but unfortunately, my pictures didn't turn out.  Hopefully one of them had success with taking pictures.



Granite Falls


There were flowers blooming everywhere, it was gorgeous!


My dad took the boys for a boys' day.  They rode the tram up to the top of Jackson Hole Ski Resort.









I don't think I have ever done so much in one week!  We have been going non-stop!  We have been to both Grand Teton National Park and Yellowstone, we went to the Bar J Chuckwagon for a night of entertainment, we swam in two lakes and one hot springs, we hiked (me too!), we rode in a boat, we celebrated the 4th of July with friends, we will celebrate my nephew Brian's Birthday today, and we have thoroughly enjoyed our time together!  Hope you enjoyed the pictures of some of the great things we have been doing!

I can't begin to tell you how amazing all of this has been for me.  What a blessing to have this incredible week with my family!  Thank you for your prayers and please pray for a safe trip back for all of us tomorrow.

My love to you all!

The Miracle of Transplantation

Pause the music player before watching.