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, September 30, 2009

My New Blog

Hello!

I wanted to let you know about my new blog. Many of you have been interested in the recipes I am trying, so I decided I would create a blog specifically to document my new cooking hobby. I will try to post pictures of what I have made as well as the recipes there.

You can check it out at: http://cookingforfunwithnancy.blogspot.com/

Hope you will visit. All my love! Nancy

Monday, September 28, 2009

Cammi is moving out of ICU!!!

I just wanted to share the wonderful news that Cammi will be moving out of ICU and onto the main transplant floor as soon as a bed becomes available. Her diaghram test has been moved to tomorrow, so keep those prayers flowing.

Thank you all! Nancy

The Health Care Crisis

Dear friends,

I received a youtube video over the weekend that I had to share. I try to stay out of politics and certainly don't choose to talk politics here, but this goes beyond politics and way beyond any political party. We have a crisis going on in our country. People are being denied health care every day because they have no insurance coverage.

What a sad state of affairs that in a country like ours, people would not have the option of affordable health care. Do you have any idea how many people have died because they couldn't afford a life saving transplant? Had I not had insurance, I too, would have lost my battle with CF because we never could have raised the million plus dollars my transplant cost.

I was recently speaking with another transplant patient who, at the time of his need for transplant, was told he would need to put down a $25,000 deposit before he would even be seen at the transplant center. Who has that kind of money?

When I became too ill to work any longer, I could have lost my health insurance completely. Luckily, I was covered by Scott's company, not my own. What a horrible dilemma people with chronic illness face. If their employer provides their health insurance, and they have to "retire" they will have to wait 2 years after being eligible for Social Security benefits before they can qualify for Medicare. Those of you with chronic illness know that you would go bankrupt LONG before that Medicare option came along.

I don't have a magic solution, but I do know that if our representatives in Washington continue to be so polarized that they can't look beyond their political party to work together to find a solution, we are doomed. I never thought I would see the day when our political parties would harm our country so much. We are Americans and we need to work together to care for each other. We deserve affordable health care so that no family has to lose a loved one simply because they cannot afford medical treatment.

Please pray with me for a solution and contact your representatives to remind them that they are working for YOU, not the insurance companies!




Thanks for letting me vent. It scares me so much to know that people are suffering in our own country and we aren't bending over backwards to help them.

All my love! Nancy

Saturday, September 26, 2009

Two New Dances for Hannah

I wanted to share with you video from Hannah's performance today in Allegany. She did two new dances, the first one she only just learned on Wednesday. She was very proud of herself for getting through it, as was I!

(Be sure to pause the music player while you watch the videos. Hannah is the tallest girl, in case you have trouble telling them apart.)

The Ending

video


The Four Hand

video



This weekend has felt like a homecoming weekend for me. Last night we attended a concert at St. Bonaventure. It was my first time back on campus since my transplant and I was greeted with so much love and happiness. It felt so good to be back and even better to see some of my dear University friends. Today we went to Bonagany which takes place in downtown Allegany and is jointly hosted by SBU and the community. Again, I ran into many familiar faces, all so genuinely pleased to see me doing so well. What a wonderful feeling to be embraced by your community the way that I have been, thank you to you all!

All my love! Nancy

A Special Request

Dear friends,

I want to ask of you a very special favor. My friend Cammi needs your prayers desperately. Instead of trying to explain it myself, I will use the words from her husband Lance's recent post:


"You may recall that in a prior blog post I mentioned that Cammi's diaphragm hasn't been fully functioning. We learned tonight that this coming Monday Cammi is scheduled to have a study done on her diaphragm to determine how well it is functioning. The results of that study could greatly influence the future prognosis for Cammi's lungs and the future strategy for Cammi's recovery from her lung transplant.

Based on tests that have previously been conducted on Cammi, it appears that her right diaphragm is not functioning and her left diaphragm has limited function. It's still unclear to what extent the left diaphragm will be able to strengthen and give her more breathing support. Because the diaphragm is an important muscle in the breathing process, its diminished function has contributed to Cammi's slow recovery from the transplant.

Cammi has made remarkable progress so far and continues to get stronger with each day. Her doctors continue to be optimistic that she will have a successful recovery. However, the integrity of her diaphragm could be a key factor in how successful that recovery can be.

We appreciate all of the thoughts and prayers that have been given by all of you on Cammi's behalf and we know that you continue to keep Cammi in your thoughts and prayers. Because the results of Monday's test are extremely important for Cammi, we would appreciate it if you would please keep a special prayer in your heart, thought in your mind or whatever other method you may use for producing positive, spiritual strength and energy for Cammi over the next few days. For those of you who would like to do so, we would also welcome you in joining us in a special fast for Cammi on Sunday. "


Please join me in extra prayer and fasting, if you are able, to ask God to intervene on Cammi's behalf and help her diaghram to start functioning.

Thank you all so much! My love, Nancy

Tuesday, September 22, 2009

What a difference a year makes!

Hello friends!

The last few days I have been really rejoicing and appreciating how far I have come in the last year. Things were getting tough at this time last year, I had really deteriorated and was fighting for my life. This year I am overjoyed with all that I am able to do.

We went to Hannah's Meet the Teacher last week. For those of you who have been following my blog since last year, you might remember what a struggle it was for me to get there. I was in my wheelchair with my oxygen and the 30 minutes we spent at the school wore me out for days after. This year was a breeze and so many people were amazed to see how far I had come. My favorite comment came from one of Scott's childhood friends who said, "Wow, you're twice the woman you were last year!" What a fun compliment.

As my 35th Birthday approaches, I have so much to celebrate. I am hoping to have a party this year, I think I deserve it. I have so much to be excited about and thankful for!

I decorated the house with our fall decorations over the weekend and thought I would share some pictures of how the decorating turned out. I DO love the fall!!!




I hope you are all having a great start of the week. May you appreciate the good things God has brought into your lives! Nancy

Thursday, September 17, 2009

You can't judge a book by its cover.



I don't know if you followed this year's America's Got Talent, but I have been rooting for one particular contestant from the start. His name is Kevin Skinner and last night he won. He may not have been the most talented act, Barbara Padilla was incredible and Recycled Percussion were exciting, but he was, BY FAR, the most genuine.

If you have not seen his first performance on the show, please take the time to watch the video above, pause my music player first. I saw it live and will never forget it. Kevin walked onto that stage and the crowd reacted by mocking and laughing at him. It was obvious no one expected him to be able to perform well, but when he started singing, the room grew silent and the audiences' hearts were moved.

How often do we judge others by their "covers"? How sad that we might miss out on a gem because of its rough external edges. I am thrilled that America voted for Kevin. I am thrilled that a chicken farmer from Kentucky with poor math skills and a funny accent could break through our initial impressions and end up winning over our hearts!

May this be a lesson to us all to never judge a book by its cover! Nancy

Wednesday, September 16, 2009

To My Friends with CF and who have had Transplants

Please read this article, I had no idea showering was putting me at risk and you may not either. Nancy

Study: Showerheads May Deliver Blast of Bacteria
By Denise Mann

If the shower scene in Alfred Hitchcock's Psycho scared you, here's another reason to scream: A new study says that potentially disease-causing germs can get trapped in showerheads and grow into biofilm, or coats of slime that deliver a bacteria blast along with your hot water.

Although the classic horror film gave legions of moviegoers a fear of showering, the new study shouldn't do the same, experts say. The bacteria probably don't pose a threat to most people, although they could be problematic for those with weakened immune systems.

Showerheads are dark, wet, and warm -- the ideal environment for bacteria that cause lung diseases to thrive. As we turn on the faucet to get clean, the showerhead may spray our bodies and the air around us with such opportunistic bugs as Mycobacterium avium and other germs known as non-tuberculosis mycobacteria, according to the new research in the Proceedings of the National Academy of Sciences.

In fact, levels of these bacteria are more than 100-fold higher than levels found in the pre-shower water, according to the researchers, who analyzed the germs in the biofilm of 45 showerheads from nine U.S cities, including New York and Denver. Health.com: The most toxic places in your home

"If you are immune compromised or are susceptible to pulmonary infections, take a bath instead of a shower," says lead researcher Leah M. Feazel, of the University of Colorado, in Boulder. "If you are healthy and your immune system is functioning properly, you should not worry about the germs in your showerhead."

Mycobacterium avium, found in 20 percent of study samples, can cause lung infections in both healthy people and those with weakened immune systems, particularly smokers, alcoholics, people with chronic lung disease, and others with conditions that make it difficult to fight off infection. Symptoms include fatigue, a chronic dry cough, and shortness of breath.

The good news is that L. pneumophila, the water-loving germ that causes Legionnaires' disease, was rare in the study. Only 3 out of 6,000 genetic sequences tested were L. pneumophila. Legionnaires' disease is a severe type of pneumonia, and outbreaks have been linked to L. pneumophila-contaminated water in large central-air-conditioning systems, whirlpool spas, and other sources of water droplets.Health.com: Safer alternatives for bathroom cleaners

"[The study] is nothing to freak out about because most germs don't hurt you," says Philip M. Tierno Jr., the director of clinical microbiology and immunology at New York University Langone Medical Center. People come into contact with 60,000 types or groups of bacteria on a regular basis, says Tierno, who is also a clinical professor of microbiology and pathology at the New York University School of Medicine in New York City. "Only one or two percent are pathogenic," he explains. Health.com: Never-get-sick secrets: Take a cold shower

That said, cleanliness is next to godliness. "The new study emphasizes the need for us to periodically get rid of biofilm on our showerheads," he says. Change the showerhead once a year or more frequently, like they do in hospitals, to prevent mineral deposits and biofilm, he suggests.Health.com: The benefits of a steamy shower

Metal showerheads appear to be less likely than plastic showerheads to grow biofilm, according to the researchers. Tierno recommends taking a steel brush and good cleaning solution to wash out metal showerheads.


Copyright Health Magazine 2009

All AboutBacteria


Find this article at:
http://www.cnn.com/2009/HEALTH/09/14/showerhead.bacteria/index.html

Bandages

Hello!

Some of you were wondering about the bandage that has been on my hand and I realized I hadn't shared my burn story.

Hannah was blessed with Scott's and my eyebrows (lucky girl!) Irish, English, and Italian... not a great mix for body hair. As early as the first grade kids teased her about her mono-brow, so, being a compassionate mother who is also cursed with a mono-brow, I began waxing her eyebrows for her.

The day before school started, we were getting her ready, painting her nails, washing her hair extra well, picking out school clothes, and, of course, we needed to tame the brow. I use microwave wax and have never had a problem with it. I went to get the hot wax out of the microwave and it EXPLODED!!! Hot wax flew everywhere! Luckily, I only got a little on my face, but the hand that was holding the jar REALLY got it (as well as the kitchen floor, counter, cabinets, and sink). I received a nasty burn and required the assistance of my PA brother-in-law to painfully remove the wax.

Of course, I have needed to be very careful about infection, so I have really been babying the burn, using antibiotic ointment with a bandage during the day and exposing it to the air at night. It does seem to be healing well and may not even scar (cross your fingers!).

Hannah may have gotten the worst end of it, however, Scott had to pluck her brow by hand, OUCH!

I don't want to bore you with my cooking, but can you tell I'm excited about this new challenge? Here is tonight's dinner, a delicious tropical pork chop recipe, YUM!!




Oops, Scott caught me with my mouth full!


My love to you all! Nancy

GREAT NEWS!!!!!

Cammi got up and walked around her room several times yesterday, was off the ventilator for SEVEN hours, and got her hair washed for the first time since transplant.

PRAISE THE LORD!!!! Keep sending those prayers her way!

Taking Pride in What You Do

Before my lungs entered the end stages of CF, I was a working woman. I loved my job, I got great satisfaction out of it, and I felt it defined who I was. When people asked what I did for a living I would proudly reply, "I am a disability counselor." I got my sense of self-worth from what I did at my job. I can remember wondering how women could stay at home. Wouldn't they be bored? Wouldn't they feel unfulfilled? Where would they get their sense of accomplishment? I believed I could never do that, certainly I would be bored.

Boy was I wrong. It is not what you do, but how you do it. I took pride in being a counselor and gave it my all, that is what made it special. Homemakers are no different, they take pride in their home, in caring for their family, in making the home environment be as wonderful as it can be. What an awesome and important responsibility!

I don't think I was a very good homemaker in the days that I worked. I took no pleasure from the household chores I did. I didn't think of it as a labor of love, but instead as a pain in the you know what! I did what I had to do to keep our household moving, but I can tell you right now, there was no love involved.

Isn't it amazing how time and experience can change you? After my transplant, as you know, I struggled. I was bored, frustrated, scared. I didn't know what was next for me. I knew I couldn't go back to work, I am too susceptible to infection, so what was I going to do? In the last month, I discovered one new purpose to my life and that is caring for my family. Not in the way I used to, by bringing in a paycheck, but by providing them with a loving home environment. What a noble choice of profession. I have cared for so many people through the years, why not turn my full attention to the ones I love the most. I started to take pride in being a homemaker and suddenly it wasn't dull and overwhelming, it was fulfilling and enjoyable!

One of the things I really hated was cooking. I am not a very good cook and I didn't think I really wanted to be. Then I went to see the movie Julie & Julia (great movie by the way!). Julie decides she will take a year and make every recipe in Julia Child's French cookbook. I enjoyed the movie very much and became intrigued. Maybe I could do something like that. So... I got out my barely used 13 year old Better Homes Cookbook and started flipping through.

The cake section caught my attention. Yes, I knew you could make a cake from scratch, but why would you when you can get it in a box? On those pages I saw scrumptious cake ideas and thought, why not? So, I have made a banana cake with homemade banana frosting (SO much better than the can!), a carrot cake, and a pumpkin molasses cake. Boy were they good. No more boxed cake for this girl.

Although the cakes were delicious, I decided I needed to try some "real" food, so I have been trying out new recipes each night. The funniest one so far was the Belgian Pot Pies. These were waffles made out of a batter with chicken, veggies, broth, etc. Although they tasted good, something about a waffle tasting like pot pie was just not appealing!

Last night I tried a chicken recipe that was, by far, my best creation yet. I used to be afraid to cook anything that called for chopped up veggies like garlic, onion, etc. Why chop up fresh veggies when you could use dry from the can. I had received a food processor for Christmas many years ago that has sat on a shelf in our laundry room untouched, well, in the last two weeks, I have broken that bad boy out of its dusty box and used it numerous times. How incredible is that machine? Throw in an onion and it comes out finely diced, who knew?

I started cooking around six, the recipe said it was quick, not really so. At eight when I finally uncovered the finished product, I was so excited I had to take pictures. I had created something that not only looked great, but it tasted amazing. Dear Scott, who was starving by the time we sat down to eat, told me it was well worth the wait and was "restaurant quality". Watch out Martha Stewart, here I come...







So, this was my long way of saying, it doesn't matter what you do, you can make it wonderful by taking pride in it and putting your full heart into it. What a wonderful new lesson I have learned!
My love to you all! Nancy

Tuesday, September 15, 2009

Good Morning!

Hello friends!

It is hard to believe we are already midway through September. The days are feeling more like fall and the trees are starting to turn. I love the fall, everything about it! I am trying to get the house straightened up so I can bring out the fall decorations. I love them almost as much as my Christmas decorations! There is a large pumpkin patch in the field in front of our house and Hannah has already picked several beautiful pumpkins. My life is so filled with blessings and joy!

We survived our first trip to Buffalo for Hannah's Irish dance lessons. The class she went to Sunday was not advanced enough, so this week she will be attending a more advanced class. It was quite overwhelming reading the packet on the way home in the car, but this is what she loves and we are prepared to commit and support her passion.

I took Hannah for her flu shot last week and learned that for 6th grade she will need two more Chicken Pox vaccines. Of course these are live virus vaccines, so I was quite concerned about how we would handle this (I was told I may have to move out of the house for up to 6 weeks, having no contact with Hannah during this time, TORTURE!!!!). I spoke to my transplant coordinator yesterday and she told me I would not have to move out, but would not be able to have any physical contact with Hannah for 2 weeks after each shot, better, but still TORTURE!!!! I also asked about the Swine Flu vaccine, which it sounds like will be a live virus vaccine as well. She informed me that for a transplant patient, regardless of getting a flu shot or not, there is still a 50% chance of getting the flu, so, once flu season kicks in, I will be very restricted and will have to get used to wearing masks out in public all over again. Not the best news, but if that is what it will take to keep me healthy, I will gladly do it.

Finally, a quick update on Cammi. She continues to improve slowly. She is doing much better now that she has the trach. They have removed two of her chest tubes which is a great sign that the fluid in her new lungs is draining. Please keep praying!

All my love! Nancy

Saturday, September 12, 2009

Hello friends!

Hello!

Sorry I haven't written in a few days. I have been struggling with fatigue and have been sleeping a lot. I am hopeful it is just because I overdid last weekend, but it has been a bit disconcerting. I haven't felt like this since before my transplant, not wanting to wake up and staying in bed much of the day. I am trying not to fight it and to give my body what it seems to need, hopefully I will be back to my energetic self soon.

My dear friend, Cammi, has had a few rough days. Her ventilator was finally removed, but she has been struggling breathing on her own, so yesterday they inserted a tracheotomy. So far, that has seemed to bring her some peace and comfort from the anxiety of breathing on her own. Please pray for her continuing recovery. She is doing such a great job and is fighting like a pro, I am so proud of her!

All my love! Nancy

Tuesday, September 8, 2009

An Update on Cammi

As of this morning, Cammi continues to do well.  She is fully alert now and is able to communicate using a whiteboard.  They have been turning off the ventilator for test runs and hopefully, she will have the vent removed soon.  Yesterday she was put in a chair for several hours and I can tell you from experience, that was uncomfortable and very tiring.  Her pain seems to be well controlled which I am extremely thankful for, it took them several days to get my pain controlled.  Cammi is a fighter and she's strong, I am betting she will be out of ICU by the weekend.

Keep those prayers coming!  Thank you!  Nancy

Monday, September 7, 2009

AMA Pro Motocross Championship, Steel City, PA

Hello! Scott and I had a wonderful weekend adventure. We left Olean around 12:00 on Thursday and headed to a State Park outside of Pittsburgh where we camped for the night. We were right on a lake and enjoyed a lovely evening with the full moon reflecting on the water.



Friday morning we had my research appointment at UPMC, so we headed out early. All went well at the appointment. My pulmonary functions were down a little to 86%, but I don't think that is anything to worry about. After the appointment, we headed back to the state park, packed up, and headed to Steel City Race Track.





This was my first time at a pro motocross race, so I wasn't sure what to expect. We were instructed to find a place to camp on the hill, so we tried to get as close to the track as we could and set up the camper. We were told there were different sections, a family section, a controlled party section, and an anything goes section. We thought we set up in the family section, but the tents next to us partied until 4 a.m. that first night, I thought I would lose it!



Friday night we wandered through the pro pits trying to spot some of the well known racers (not that I would know any of them if they walked right up and introduced themselves). It was amazing to see the equipment, semis, and buses for each of the pro teams. We ran into some Monster Energy Drink Girls and, being the loving wife that I am, I took a picture of Scott with them.


Saturday was a lovely day for outdoor motocross, sunny and 79. It was quite fascinating to see the races and I especially enjoyed the women's race and the pit bike races. I lasted through the first three races before intermission, but the sleepless night before (those darn partiers) got to me and I passed out for the second set of races. I woke up to the winners being announced. The picture below is of Chad Reed, the only name I knew, and the overall winner for 2009.
Saturday night was much quieter, our neighbors left when the races ended, so we enjoyed a camp fire with some friends, fireworks, and then early to bed. One more experience to add to my list of "never thought I'd be able to do that" items!

Sunday, September 6, 2009

Cammi Got Her Lungs!!!!!


I have been dying to share this wonderful news with all of you. Friday morning after my appointments at UPMC I realized I had a voicemail on my cell. It was Cammi's mom, Judy. She called to tell me that Cammi was in surgery getting her new lungs, PRAISE THE LORD!!! This has been such a long time in coming and Cammi deserves those new lungs so much. I have never met a more devoted wife, mother, and daughter. She has become such a close and dear friend and I was a wreck all day Friday waiting for the news that the surgery had gone well. As of last night, she had still not regained full consciousness, but her vitals are good and things are moving forward successfully. When she does wake up, it will be hellish for a couple of days, those first couple of days in ICU were the worst of my life, so she needs your prayers for strength, courage, and peace.


Thank you to all of you who were praying with me for the miracle of new lungs for Cammi. Prayers work! Never lose faith, even when things seem impossible!


With overwhelming joy! Nancy

Thursday, September 3, 2009

My 5th Grader!

Hannah started 5th Grade on Tuesday and so far she seems to really be liking it. She got a really fun homeroom teacher, Mr. Rogers, who I think will be very encouraging during the year. Her schedule is going to be hectic this year. She is taking Irish Dance in Olean on Wednesdays and in Buffalo on Sundays (she is hoping to compete this year), she has a Theatre class on Tuesday evenings, and piano lessons on Thursdays. She then needs to fit in homework, and practice the flute, piano, and her dance steps. It seems like a lot for a 9 year old, but hopefully she can handle it.































Today was school picture day, here is what she wore.

My mom left yesterday. It was hard to see her go, but we had such a great visit. We are hoping they will be able to return for Christmas and, depending on the flu situation this winter, our family would like to visit there in February.
Scott and I are headed to Pittsburgh today. I have a research appointment tomorrow morning, then we will be attending a professional motocross race on Saturday. We will be camping out for three nights, so I am hopeful I have packed plenty of supplies.
I hope you all have a wonderful Labor Day weekend! My love to you all! Nancy

The Miracle of Transplantation

Pause the music player before watching.