Rounds Inspirational Journeys

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

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

Friday, April 25, 2008 7:15 PM EDT OLEAN TIMES HERALD 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 c...

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! Nancy

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.

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...

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

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.

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

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.

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 difficul...

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!

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.

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 nancymatthews74@yahoo.com , though I can't promise I'll be able to respond, I will read every on...

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.

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!