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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Wednesday, November 25, 2009

Prayers for the Feely Family

Dear friends,

Hannah came home from school yesterday with sad news. The nurse at her school, Jean Feely, had been killed in a car accident on her way to school that morning. What a difficult day for the staff and students at Portville Central. Please keep Jean's family and friends in your hearts and prayers, this will not be the happy Thanksgiving they had hoped for this year. Jean, however, will be celebrating Thanksgiving with God, what a lucky lady!

Please be sure to take the time to reflect on all that you have to be thankful for and to praise and worship the God who has given you life, love, and family.

May God bless you all and may you have a Thanksgiving full of blessings! Nancy

Monday, November 23, 2009

An Awesome Weekend!




For the last several months Hannah and I have been counting down to an exciting (for us) event. The release of New Moon, the movie to the second book in Stephenie Meyer's series Twilight. This past Friday New Moon opened in Theaters and on Saturday, Scott, Hannah, and I stood in line for 45 minutes to get in to see the film (I bought our tickets a month ago, knowing this weekend would be sold out.) I don't think I have been that excited about something in a long time.

I enjoyed the movie a lot, it was very true to the book, but I have to admit I am still processing it. I think Hannah and I are going to try to go again this Wednesday, maybe then I will have a more concrete feeling about it.

I don't believe I have ever mentioned my love for the Twilight Saga here on my blog, which is surprising considering Scott thinks I am obsessed, but I need to explain why this series means so much to me.

Do you remember last year when I returned from Pittsburgh? After my parents left I was a wreck. Hannah's friends were all into Twilight, so we rented the movie. I enjoyed it and decided to read the next book in the series. I got hooked. I had been unable to concentrate on reading, but for some reason, these books kept me focused and interested. I started using them as a reward and motivator to get myself to do the things that were causing me anxiety around the house. "Once I do the dishes, I can read another chapter. After I fold that laundry, I can read another chapter." It was just the reward I needed to keep me functioning.

I have since re-read the series a second time and could pick it back up and read it again. I love the characters, feel like I know them, and have enjoyed following the story of their lives. For those of you with misperceptions about the books, they are not horror stories, but stories of human (vampire, werewolf) bonds, love, loyalty, compassion, and friendship. I look forward to seeing the next two movies in the years to come.

On a side note, I have to point out a very STUPID thing I did. I forgot to bring a mask. I am trying to get back in the habit of wearing masks when I am in a crowd. I can't think of a much worse place to go without a mask than to a theater full of children and teens. If I get sick, I totally deserve it, but please pray that I don't.

My love to you all! Nancy

Friday, November 20, 2009

Recall of Vicks Sinex Nasal Spray

I recieved an e-mail from my CF Center in Buffalo today about this recall. I have B. Cepacia and don't want any other CF patients to have to suffer the consequences of a B. Cepacia colonization. Please read this carefully if you use Vicks Spray. Nancy

The Cystic Fibrosis Foundation wanted to notify you of this important recall concerning B. Cepacia in Vicks sinex nasal spray.

The Procter & Gamble Company today initiated a voluntary recall of three lots of its Vicks Sinex nasal spray in three countries: the United States , Germany and the United Kingdom . The company issued the recall as a precautionary step after finding the bacteria B. cepacia in a small amount of product made at its plant in Gross Gerau, Germany.



Voluntary Recall of Vicks Sinex Nasal Spray by Proctor & Gamble

November 19, 2009

The Procter & Gamble Company today initiated a voluntary recall of three lots of its Vicks Sinex nasal spray in three countries: the United States, Germany and the United Kingdom.

The company issued the recall as a precautionary step after finding the bacteria B. cepacia in a small amount of product made at its plant in Gross Gerau, Germany.

There have been no reports of illness. However, B. cepacia can cause serious infections for individuals with chronic lung conditions, such as cystic fibrosis.

The lot numbers of the affected products are:


Lot #
9239028831 United States Vicks Sinex Vapospray 12-Hour Decongestant Ultra Fine Mist, 15 ml., Nasal Spray
9224028832 United Kingdom Vicks Sinex Micromist Aqueous Nasal Spray Solution, 15 ml
9224028833 Germany Wick Sinex Schnupfenspray Dosiersystem, 15 ml


The lot number is listed on both the outer carton and the bottle.

Procter & Gamble is removing the affected Vicks Sinex Nasal Spray products from store shelves. Anyone who has these specific lots of Vicks Sinex Nasal Spray can call Procter & Gamble for a replacement coupon or refund at the follow number:

For More Information

In the United States, call (877) 876-7881 (Mon. - Fri., 9:00 am - 6:00 pm ET; Sat. - Sun., 9:00 am - 4:00 pm ET)


In the United Kingdom, call 0800-5555-15 (4:00 pm - 9:00 pm local time and will continue Mon. - Fri.; 8:00 am - 6:00 pm local time, Sat. - Sun., 9:00 am - 5:00 pm local time)


In Germany, call 0800-111-6131 (4:00 pm - 9:00 pm local time and will continue Mon. - Fri.; 8:00 am - 6:00 pm local time, Sat. - Sun., 9:00 am - 5:00 pm local time)

Thursday, November 19, 2009

Prayers Needed

Dear friends,

I got some exciting news this morning, a new friend of mine, Bill, who also has CF got his call for lungs and is having his transplant today. He has a daughter, almost Hannah's age, and a wonderful wife. Please keep him and all of his family in your prayers. May his surgery be successful and may he recover quickly with as little pain as possible!

God is GOOD! He hears us calling and He answers us. Thank you for your kindness and mercy oh Lord!

All my love! Nancy

Tuesday, November 17, 2009

A Vanity Issue

(Picture taken in Ellicottville, NY at the Beer and Wine Festival. I was the Designated Driver for Scott and our friends Holly and Bryce. This was Scott's 4th year in attendance, but this was the first year I was healthy enough to go. We had a blast!)

You know I have always tried to be honest here on my blog, so I thought I would share with you my latest struggle. It is a total vanity issue and is so silly, yet is causing me a lot of grief.

When my friends and family look at the above picture, they are so sweet and supportive and tell me I look great and healthy. When I look at the above picture I think, "Oh my, how much fatter can my face possibly get!" It seems as though every picture of me taken, my face gets a little bit rounder. Now, this shouldn't bother me. I am healthy, happy, doing things I never dreamed I would do again, yet it is a major thorn in my side. I know I have absolutely no control over it, it is caused by the Prednisone I am taking and will probably be like this for the rest of my life, yet I keep thinking there must be something I am doing wrong.

Please tell me I am not the only one who has become fixated on something about themselves that is unchangeable and needs to just be accepted and laughed about. Why are we so vain that we worry about these things? I am loved for who I am, not for my appearance, good or bad, I should know this by now, heck, I was a living skeleton for several months and still got loved on. It is a weakness I am working on and praying about and thought I should share in case any of you might be beating yourselves up about a similar vanity issue. We are all beautiful in God's eyes and we need to remember to view others as God does. External beauty means nothing in the eyes of God, it is the soul within who makes us truly beautiful!

You are all beautiful to me and I thank you for your encouragement and ability to look beyond my ever growing face to see the beauty that is within it.

My love to you all! Nancy



Monday, November 16, 2009

Exciting New CF Research!

Hope continues to grow within the CF community. I do believe I will see a cure for CF in my lifetime, now that I have been given a chance to live on!

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Drug could stop mucus production in cystic fibrosis sufferers
Health » VX-770, in final stage of trials, may add decades to lives and shorten daily medical routines.
By Sheena Mcfarland

The Salt Lake Tribune


Salt Lake Tribune
Updated:11/16/2009 12:56:50 PM MST


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Somer Love's typical day is a lot different from most people's.

Yes, she runs errands, hangs out with her family and friends and plays with her two pugs, Oscar and Lily.

But her day also includes taking more than 50 drugs and supplements, and dedicating nearly three hours to treatments that keep down the level of mucus that can fill her lungs because of cystic fibrosis.

"Most girls wake up early to curl their hair. I wake up to take a bunch of drugs," said Love, 30, who often punctuates the end of her sentences with laughter.

A new drug trial underway at the University of Utah could significantly cut back on Love's daily medical routine and improve her health and longevity.

The drug, currently called VX-770, would not do what most cystic fibrosis drugs currently do: treat the symptoms of digestion problems and mucus build-up in lungs, which can lead to infections and severe lung damage.

Instead, the drug is designed to fix the problem on the cellular level, and prevent mucus from forming in the first place.

"It's going to shake things up," Love said. "It's going to change cystic fibrosis as we know it."

Researcher Theodore Liou, a specialist in pulmonary critical care at the University of Utah Hospital, takes a more cautious tone, noting past drugs have been successful but not as revolutionary as patients have hoped. Still, he's optimistic.

"We need better therapies not only to give people longer lives but better quality of life," Liou said. "As new therapies are developed, some of the old ones will fall away and people will be less burdened."

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What is cystic fibrosis? » Cystic fibrosis is a genetic condition that causes cells to improperly manufacture a protein. The flawed protein results in the production of a thick, sticky mucus.

The mucus clogs and damages lungs and breaks down ducts in the pancreas, causing digestion problems.

It also coats the inside of the lungs, collecting bacteria that a healthy lung would expel. That leads to infection and triggers the immune system.

"Unfortunately, the immune cells' weapons [against the bacteria] are just as lethal against human cells," Liou said. "Most of the harm done to the lungs is actually collateral damage."

That means many people with cystic fibrosis progress from difficulty walking up stairs to using oxygen and a wheelchair.

There are different genetic mutations that cause cystic fibrosis. The trial for VX-770 focuses on a mutation that affects only about 2 percent of people. Researchers hope they can adapt the drug to work for a much wider population.

If the drug stops cells from producing mucus, it won't reverse any existing lung damage. But for those with minimal damage -- younger patients, or those with milder cases -- the drug could provide the closest thing to a cure.

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Dreams becoming reality » The Cystic Fibrosis Foundation has provided millions of dollars in funding to keep research centers such as the one at the U. stocked with personnel and equipment such as centrifuges and freezers. It has invested more than $75 million to see VX-770 through the testing stages.

The foundation has played a major role in developing all four drugs currently on the market to treat cystic fibrosis, and the foundation's leaders anticipate submitting 13 new drug applications with the Food and Drug Administration by 2012. Four of those, including VX-770, are in the third and final stage of trials.

Robert Beall, CEO and president of the Cystic Fibrosis Foundation, believes VX-770 and similar drugs will add decades to patients' lives.

"This pill is causing great hope," he said. "The dreams that you and I have for our children can become a reality for CF patients."

If the drug proves effective and safe, the quality of life will improve for patients like Love, whose care regimen is essentially a part-time job. In a voice husky from damage to her lungs, she said she's used to the drug regimen that's kept her alive since she was diagnosed at 11 months old.

But she'd love to do less. And in any case, she said, such trials get researchers one step closer to a cure.

"Every single new drug trial has the potential of adding years to my life," Love said. "Right now, I'm just taking it one day at a time."

smcfarland@sltrib.com

CF drug being tested in 3 trials

Cystic fibrosis affects about 30,000 Americans and about 70,000 people worldwide. A new drug, dubbed VX-770, is being tested at University Hospital in Salt Lake City in three trials:

A 48-week trial for patients age 12 years and older who carry a rare cystic fibrosis mutation, called G551D.

A 48-week trial for patients ages 6 to 11 years who carry the same rare mutation.

A 16-week trial to evaluate the drug's impact on patients age 12 years and older who have the most common mutation, called Delta F508.

To be considered for participation in the University Hospital trials, patients must know which genetic mutation they have. Some insurance plans pay for testing, which can cost up to $3,000, but many do not. Call 801-587-7458 for more information.

Friday, November 13, 2009

How to spend $50

Well, after I posted this morning, I contacted one of the nurse's at UPMC because my swollen glands were really bothering me and there was no mention of swollen glands as a side effect from the bronch. Sure enough, that isn't a side effect, so they sent me to the ER for a CT of my throat and chest. Luckily nothing showed up. They also did a strep and mono test. I am a little nervous about the mono. I have been feeling very tired for several days. I probably won't get results from those test until Monday.

So, my day of rest was spent at the ER where for $50 I got a bed, a mask, an IV and a couple of good hours of reading, what a bargain!( I didn't count the CT, because that bill wil come later : ))

Hope you all had a better day than that! Nancy

Procedure

Hello!

All went well with my procedure and they were able to open the space with a balloon alone. I will probably have to go back for this procedure again, but at least this first one worked. I am very tired and sore today, my glands in my throat are quite swollen and painful. My throat is also sore, but that is because they had to intubate me during the procedure because of the anesthetic they used. It sounds like there was already quite a bit of mucus build up behind this opening, so I need to get that out as soon as possible, but hopefully with the full opening I will be able to dislodge and cough it out.

Thank you for all your prayers. I am going to just take it easy now.

All my love! Nancy

Monday, November 9, 2009

Back to Pittsburgh

Hello!

I continue to not feel very well. I am very tired and want to sleep a lot. I slept for 4 hours yesterday when we got home from Buffalo and slept until 10 this morning. Hopefully this will pass soon. It is stressful to feel like this. It brings back too many bad memories. I keep telling myself that this is part of life, I will get sick from time to time, but it will not last like before. I will certainly be relieved when I start to feel better.

We will be heading back to Pittsburgh on Wednesday and I will have the procedure to open my airway on Thursday morning. We are hoping this problem is what has been causing the cough I have been struggling with for several months. Please pray that is the case and it will be resolved after Thursday's procedure.

I hope you are all well.

P.S. If you haven't voted for my blog on Wellsphere yet, please do. I have dropped from 5th place to 12th place in the last week and would love to get back into the top 5, only you can make that happen! Thank you!

Nancy

Thursday, November 5, 2009

Update from Dr. Pilewski

Hello!

I received an e-mail from my doctor today, and I promised I would share:


There was a 50% narrowing of one of the segments (branches) of the right lung. Dr. Johnson thought that you should have a balloon dilatation of this (basically another bronchoscopy with anesthesia to put you a bit more asleep). We can arrange this for when it's convenient. This is a common problem that usually resolves after the airway is opened towards normal.

The biopsy was negative for rejection. Cultures are negative so far. This is good!

We'll be in touch to find a date for you to return, sometime in the next month.


I feel better having heard from him, it doesn't sound like this will be any big deal to resolve.


I don't want to scare any of you who are planning to get the H1N1 vaccine, because I think it is very important, but I am feeling awful today. I don't normally have reactions to the flu vaccine, but I think that is what this is. I am exhausted and very nauseated, both possible side effects. Please pray that is all this is!


It is snowing right now, HUGE flakes, it is mesmerizing and relaxing, just what I need today when I'm feeling so punky.



My love to you all! Nancy

Wednesday, November 4, 2009

Sorry for the Delay

You all must be wondering if I dropped off the face of the earth or something. My body certainly feels like it! What a crazy several days!

Our trip to Pittsburgh went well. My Pulmonary Functions continue to stay at 92%. There was some concern after my bronch. about the main opening between my trach. and my lungs. That is where my new lungs were sown and the scar tissue seems to keep growing. At this point the opening has closed up 50% since transplant. Obviously, if that were to close too much, I would begin to have trouble with infection, breathing, etc. I am waiting to hear what the plan will be to deal with this, I will keep you updated.

We had two wonderful visits, Wednesday evening with our friends Scott & Christina and their 5 children, then Thursday evening with Cammi and her husband Lance. Cammi looks great and is getting better every day. She is struggling with many of the same issues I did post-transplant, so continue to keep her in your prayers.

We got home Friday afternoon and began preparations for Hannah's party. Saturday, we Trick or Treated and I dressed up and went from door to door with Hannah and her friend Taylor. I got some strange looks, but no one denied me candy. It was so much fun, quite a difference from being pushed around in my wheelchair in the cold last year.

Our Halloween/Birthday Activities: There were too many pictures to post, so I made a slideshow instead.

video



Hannah's party was a huge success. Scott created a haunted house in our basement and with the help of our friends Holly and Bryce, had the girls screaming all afternoon. I made a litter box cake per Hannah's request and let me tell you, it looked pretty disgusting, but tasted great (see my cooking blog for the recipe), and a witch's brew punch with a floating hand in it. Everyone seemed to have a really good time.


On Monday, Hannah brought Halloween sugar cookies to school and we invited Scott's family over to celebrate Hannah's Birthday with Chili (her request, one of the new recipes I tried a few weeks ago) and a pumpkin torte. When we fell into bed I could tell she was completely satisfied with her Birthday. Another year gone by, where did my baby go?


Yesterday we were able to all get the H1N1 vaccine, THANK YOU DR. WITTE's OFFICE!!!!!! So we should be as protected as we can be as we head into the winter months.


I am more tired than I have been since before my transplant. I will admit, I did WAY TOO MUCH!!!! It was just so thrilling to be able to give my daughter the best Birthday ever and it was SO WORTH the exhaustion I am feeling now.


Hope you all had a very happy Halloween and are preparing for Thanksgiving by treasuring and remembering all of the things you have to be thankful for!



All my love! Nancy

The Miracle of Transplantation

Pause the music player before watching.