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


Wednesday, April 30, 2008

Packed and Ready!

It is hard to believe we will be moving tomorrow. I am surprisingly calm considering what we are facing.

I received an awesome SBU t-shirt from my friend, Amanda, today. She is an RA on the 4th floor of Dev. at St. Bonaventure and the girls on her floor had decided to make me an honorary floor-mate. The shirt is bright yellow tie die, it is just the sunny, happy shirt I need for Pittsburgh!

My whole family has been fighting the stomach flu since Monday, so I hope we will be all better by tomorrow. I have my bags packed, the medications organized, and my special blanket (given to me in memory of my dear friend Emily by her mom) ready for the ride in the car.

I will know tomorrow which of the Family Houses we will be staying at and I will make sure to post the address and possibly the phone number once I have them.

Thank you all so much! I continue to receive the most upbeat and wonderful posts and e-mails. I feel truly loved by all of you!

May God Bless You! Nancy

Monday, April 28, 2008

Greatly Blessed!

I just want to share how peaceful and happy I feel. I have experienced such an outpouring of love from the community, friends, and my family. I couldn't be more blessed! I will be going to Pittsburgh knowing that I am surrounded by love and prayers and that is such a comfort! Thank you all so much!

We had a lovely weekend. We celebrated Scott's Birthday with a wonderful family dinner at my sister-in-law's on Saturday. Scott's mom made an adorable puppy cake.

Everything is set for our move on Thursday, so I am just trying to enjoy my last few days at home.

All my love! Nancy

Saturday, April 26, 2008

Woman's illness inspires her to write book to inspire others

Friday, April 25, 2008 7:15 PM EDT


By KATE DAY SAGER (Thank you, Kate, for writing such a lovely article! Nancy)

When Nancy Matthews’ illness took a turn for the worse last year and forced her to stop working, she wanted to write a book for her young daughter to let her know the lessons she had learned in life. Mrs. Matthews’ book, entitled “A Journey Toward Spiritual Peace,” is now available locally with the author’s hope that it “will touch the lives of many other people.”

A resident of Weston’s Mills, Mrs. Matthews has been fighting cystic fibrosis since childhood and entered the end stages of the disease in January of 2007. The disease causes cells in the body to produce thick, sticky mucus that clogs the tubes and passageways within the body. The clogging causes the pancreas to not produce the enzymes necessary for digestion and causes scarring, inflammation and infections in the lungs often leading to respiratory failure and death.

Mrs. Matthews said she is currently on a waiting list for a double lung transplant and expects to relocate to Pittsburgh in the near future to receive new lungs. She recently talked about her decision to write the book that takes a look at her life, and how she found her way to her own spiritual peace. “I am so hopeful this book will touch the lives of many other people,” Mrs. Matthews said. “I have learned so much through my illness that I would love to think others could learn without having to go through an illness.” She noted that the book is meant for everyone, not just people facing terminal illness. “If it can touch and change the life of one other person, that is all that truly matters,” she said.

A native of Jackson Hole, Wyo., she moved to the area in 1993 to attend St. Bonaventure University, where her uncle worked as a professor. At St. Bonaventure, she received a bachelor’s degree in psychology and a master’s degree in counseling. While in college, she also met her husband, Scott, a native of Portville, and they married in 1996. In 1999, she gave birth to their daughter, Hannah Marie.

Mrs. Matthews said she worked at St. Bonaventure as the coordinator of Disability Support Services from 1999 to January of 2007 when she had to go on disability. “I had taught an introductory freshman course at SBU titled ‘The Meaning of Life’ and the goal of that course was to help students look at the truly meaningful things in their lives,” Mrs. Matthews said. “The book was an extension of the lessons I had been trying to teach these students.”

She started writing the book in the spring of 2007, but didn’t find inspiration for the work until September of 2007 when she was hospitalized for pneumonia. “I can’t really explain it, but one day in the hospital the whole book came to me and I began writing,” she said. “I finished the first draft in about three weeks and found such peace and joy writing.”

She said the local book sales have been doing well with over 250 sold at this point. “It’s not making a ton of money, but it will at least help a little bit” with medical costs incurred by her illness, she said.
The book has even been used at the pulpit by an area preacher. “I gave a copy of the book to Hillside Wesleyan Church and Rev. Rick Long did a whole sermon on it,” she said. “A lot of people also have written to me and said how much it touched them.”

Mrs. Matthews said her husband, who owns Cubic Storage Inc., and her daughter, who is the third grade, have been very supportive of her work.

In the meantime, Mrs. Matthews said she has been waiting for insurance authorization for her transplant, and then word that a donor is available. “It’s hard to wait,” she said. “Every time the phone rings everyone jumps.”
Pat Spaeth, a friend of Mrs. Matthews, said she also enjoyed and appreciated the book. “I thought it was a good book and knowing Nancy, I could see her in it,” Mrs. Spaeth said. “She’s just such a sweet person.” Mrs. Spaeth said she runs a pre-school program and Mrs. Matthews’ daughter once attended. In addition, Mrs. Matthews had spoken with the pre-school children in the past about cystic fibrosis when they conducted a fundraiser for the disease. “She (Mrs. Matthews) has inspired and helped a lot of people,” Mrs. Spaeth said.

Mrs. Matthews’ book can be purchased at the St. Bonaventure book store, at the Linger Longer Cafe in Allegany and at some local churches. The Web site also provides updates on her medical progress.

Friday, April 25, 2008

We Finally Have a Plan!

As of today, everything has gone through and I am officially on the list. Unfortunately, because of the Friday timing, we will not be able to make arrangements for oxygen and housing this weekend in Pittsburgh, so we have decided to wait until next Thursday, May 1st to re-locate. I have a follow-up doctor's appointment at UPMC that day, so that will work out well. My status on the list will be inactive until we get to Pittsburgh on Thursday, that way we won't have to worry about getting a call in the next few days that lungs are available.

I am feeling good about this decision and am glad to finally have a direction and plan. I am also happy because I will be able to spend Scott's Birthday with him this Monday.

May you all have a wonderful weekend! I send my love!


Wednesday, April 23, 2008

April 23, 2008

Still no news from Pittsburgh. I did receive a call from my insurance this morning telling me the authorization has gone through, so we are just waiting for Pittsburgh to get the official word. I'll continue to keep you posted as I know anything.

Monday, April 21, 2008

How the List Works

I still have not been assigned a Lung Allocation Score, that cannot happen until my insurance approval comes through.

I wanted to explain the listing process to you. I know many of you have asked how it works. In the past, people were placed on the transplant list based on when they listed, not their need for lungs. The current system is much improved and takes into account three factors:

1. Blood Type (I am an O which is the most common, Rh factor does not matter)

2. Chest Size (This is determined by height and using a chest x-ray)

3. LAS (Lung Allocation Score) This is the number I will be assigned based on my medical need for a transplant. The scores range from 0 to 100, the higher the score the sooner the transplant.

According to my transplant coordinator, there doesn't appear to be anyone ahead of me on the list based on my size and blood type, so that is a good sign that transplant could happen quickly once I am assigned an LAS.

I hope that helps. I will continue to keep you posted.

Saturday, April 19, 2008

Sorry to leave you hanging...

Well, it is Saturday and we still don't know where I stand. One good thing is that I get to enjoy the beautiful weekend with my family, attend my niece and nephew's Birthday party today, and I don't have to be on pins every time the phone rings. The last few days the phone has caused my blood pressure to elevate every time it rings.

Hopefully I will have news on Monday. Until then, please have a wonderful weekend, and appreciate all of the wonderful gifts you have been blessed with.

All my love! Nancy

Wednesday, April 16, 2008

Waiting for Insurance Authorization

I heard from Pittsburgh and all we are waiting for is authorization from my insurance. They will get back to me as soon as that goes through to discuss all of the logistics, but we are definitely on the road to transplant.

Tuesday, April 15, 2008

No News Yet...

I was hopeful I would hear something today about my status on the list, but I did not. I am anxious to start preparing for what is to come, but am also glad to have another day at home.

It was a beautiful day here today, so I went with my mom to St. Bonaventure to see my friends at the Learning Center, I hadn't been there in a while, so it felt great to be back in my old stomping grounds. Although my mom forgot the foot holders for my wheelchair, so I had to hold my legs up all by myself, (that was good exercise for me!) it was really nice to get out.

I will let you all know as soon as I know anything from Pittsburgh.

All my love! Nancy

Sunday, April 13, 2008

We are home!

I was released yesterday around 2:00, there were some problems because no one had ordered home IV antibiotics for me, but they were taken care of and we were finally able to leave. I slept the whole way home in the car, so it was an uneventful trip.

I am very tired, but glad to be home, even if it will only be for a brief time.

Friday, April 11, 2008

Home Tomorrow

Well, it does sound like I will be released tomorrow. We will travel home, but may need to come back next week. I will be listed for transplant on Monday and will be assigned a position on the list. According to Dr. Pilewski, I may be at the top of the list and, if not, would most likely only have one person ahead of me, so transplant could be very soon. If I am at the top, Mom and I will get everything organized at home, then move back to Pittsburgh, probably by next weekend.

Continue those wonderful prayers! As terrified as I am of the upcoming surgery, I so look forward to taking a great big breath with my new lungs.

I do have a special prayer request. As I look forward to a possible second chance at life, a wonderful and generous person is facing death, most likely with no knowledge of how little time he or she has left. Please join me in saying special prayers for this person, the one who will bring me new life, and for his or her family who will be faced with the difficult challenge of letting go of their loved one.

Thank you all so much! All my love! Nancy

Friday, April 11

Good Morning!

I don't have much to report yet. I did not see Dr. Pilewski yesterday, but am hopeful he will be by today. We are still hoping I will be released tomorrow, although I have been having an allergic reaction to one of the drugs I am on, so we are trying to figure that out.

I completed a six minute walk yesterday, in preparation for listing. That is the third one I have done here since October, and it certainly gives me an indication of how my lungs have declined in just that short amount of time. In October I was able to walk 1200 feet without any oxygen, yesterday I struggled to walk 900 feet with 4 liters of oxygen.

I will try to post a message if I get any further updates today. Thank you for your continued support and prayers!

Wednesday, April 9, 2008

April 9, 2008

Today has been a good day. My parents arrived at the hospital and I am feeling a lot better. My white blood cell count has come down which is an excellent sign that the antibiotics are working. If all goes well, I may be able to be released on home IV antibiotics by Friday or Saturday. They are planning to get all of the tests run for listing prior to my release and we will be able to discuss approximately how long I may have before transplant. Hopefully I will be able to come home, at least for a little while, before we need to come back.

Tuesday, April 8, 2008

April 8, 2008

Dr. Pilewski was just in to see me. I definitely have a whopper of a lung infection and it is a good thing we came when we did. I am feeling more alert this evening, I have been very tired, hopefully that is a good sign that the IV antibiotics are starting to work.

Dr. Pilewski agrees it is time to list, so they will try to update any tests that need updated and hopefully I will still get to see the surgeons tomorrow. Now it is really in God's hands, Dr. Pilewski said it could be a few days to a few weeks, it is impossible to know. Hopefully my transplant coordinator can help me decide whether I should stay here, even after discharge, or if I can come home for a period of time. I will keep you posted.

Thank you all so much for your wonderfully supportive and loving postings and e-mails. If you would prefer not to post on this site, please feel free to send me an e-mail at , though I can't promise I'll be able to respond, I will read every one.

With love and friendship! Nancy

Admitted Yesterday

We had a good trip to Pittsburgh yesterday and I was admitted to UPMC Montefiore Hospital as soon as we arrived. Although I haven't seen my doctor yet, from what other medical professionals here have told me, I have pneumonia again. They started me on IV antibiotics last night, took X-rays, and did bloodwork. Hopefully I will get to see Dr. Pilewski today. I am feeling better just knowing I am here and being cared for.

Sunday, April 6, 2008

The time to list has come.

I have been feeling quite ill for the last few days and contacted Pittsburgh on Thursday to see if I could move up my May appointment. I am scheduled to see the surgeons this coming Wednesday and my doctor, Dr. Pilewski, on Thursday. We had planned to leave Tuesday afternoon, but I do not feel I am well enough to wait that long. We will leave for Pittsburgh first thing tomorrow morning, hoping I can be admitted to the hospital there. Hopefully I can get on the transplant list and start moving forward in the direction of new lungs.

We will try to keep this site updated, so you can visit it to find out how I am doing. Please pray for me and my family!

The Miracle of Transplantation

Pause the music player before watching.