The Power of Prayer

You all have the most powerful prayers EVER!! This morning I received a call from my Scotty telling me he and Hannah miss me too much and had decided to come to Pittsburgh today and stay until Monday. I couldn't have been happier! That is just what I needed to help my hurting heart. It has felt like Christmas Eve all day. They should be here in about an hour, I can't wait!

Thank you all so much for your prayers, they truly do make a HUGE difference!

Please don't fret if you don't hear from me until Monday, I want to spend all of my time with my family. I promise, though, if we get the call, we will make sure to post the good news.

Enjoy your weekend, I know I will! All my love, Nancy

Hard Day

Hello my friends,

I usually try to be upbeat in my posts, but I have to be honest, the wait and being away from Scott and Hannah is really getting to me. My heart aches to hold my little girl, I have never been away from her for so long. I know God will send me the right lungs at the right time, but it is getting harder and harder to be patient and at peace. I know today's sadness will pass and tomorrow will start another day with a new fresh perspective, but for right now, I need your prayers to heal my heart. This chance for lungs is such a wonderful and blessed opportunity and I keep reminding myself, that this time away from Hannah will hopefully buy me a few more years at her side. It will be worth it, that I am sure of!

May you all feel my love and friendship! Nancy

Info. about Lung Transplant at UPMC

Lung Transplantation Program

The University of Pittsburgh Medical Center is one of the oldest, most experienced centers in the world for lung and combined heart-lung transplantation. Since 1982, UPMC transplant specialists have performed more than 900 lung or heart-lung transplants, remaining one of the most active lung transplant centers in the world, and producing outcomes that exceed national standards.

According to new 2005 data from the United Network for Organ Sharing (UNOS), UPMC is the largest lung transplant center in the United States, with survival rates well above the national average.

UPMC lung and heart-lung transplant specialists from the Heart, Lung, and Esophageal Surgery Institute care for people with life-threatening lung diseases, including pulmonary parenchymal or vascular disease that significantly limits life activities despite previous surgical and medical therapy. These specialists also carry out heart-lung-liver and other combined organ transplants including the lungs. Specific diseases treatable by transplantation therapy include:

brochiectasis, chronic bronchitis, cystic fibrosis, emphasema, eosinophilic granuloma, Goodpasture's syndrome, and pulmonary fibrosis.

UPMC's clinical experience and dedicated support resources allow its specialists to accept many patients as lung transplant candidates that other centers may decline. Coronary artery disease, Burkholderia infection in people with cystic fibrosis, advanced age, and scleroderma do not necessarily disqualify a person as a recipient. Few centers in the world can approach UPMC's experience with such difficult-to-transplant patients. Other UPMC capabilities include living-donor lung transplantation, extensive experience with heart-lung transplantation, and an antirejection-drug-weaning protocol that helps minimize doses and associated side effects from these lifesaving but powerful drugs.

An important facet of the lung transplant program at UPMC is its commitment to advancing the field of pulmonary transplantation. Active research programs include numerous clinical research protocols. An area of intense focus is in preconditioning regimens that may reduce the incidence of chronic rejection as well as the need for immunosuppressive medications, thus reducing the drugs' toxicity. UPMC's published and ongoing efforts in the use of aerosolized cyclosporine as an immunosuppressant may also contribute in this capacity.

UPMC lung transplant specialists have also taken steps to address some of the other major challenges facing lung transplantation today: the organ shortage, ischemia-reperfusion injury, and the damage organs suffer while they're in transit between donor and recipient. UPMC specialists are aggressive with "resuscitation" of donors, both in and out of the local organ procurement region, thus helping to expand the supply of donor organs. In addition, they are working on strategies and experimental approaches that may reduce ischemia-reperfusion injury and result in further improvements in outcomes.

Our Success

The program offers a unique combination of long-standing institutional commitment to transplantation, availability of investigational therapies, and comprehensive expertise for ancillary care — all which benefit patients.

UPMC specialists have made a concerted effort to reach the best outcomes in the world — an effort that is bearing fruit and contributed to UPMC's ranking among the top respiratory programs in U.S. News & World Report's annual surveys. In 2004, UPMC lung transplant patients' 30-day survival was 97 percent. This rate, as well as the program's one- and five-year survival statistics, compare quite favorably to national and international benchmarks despite the tendency to accept complex cases that would not qualify for transplantation elsewhere.

According to new data from the United Network for Organ Sharing (UNOS), UPMC is the largest lung transplant center in the United States, with survival rates well above the national average.

Survival Statistics

The Lung Transplantation Program's one- and five-year survival statistics compare quite favorably to national and international benchmarks despite providing care to an unusually large number of people whose complex cases would not qualify for transplantation elsewhere.
Outcomes are based on post-transplant survival. Each pair of percentiles compares UPMC outcomes with the national average of all transplant centers as tabulated by the United Network of Organ Sharing. Outcomes are computed using the Kaplan-Meier Method, a statistical technique that can produce transplant outcome statistics for a given year when data are incomplete.

Percent Survival:............UPMC...............N'tl Average

3 month..............................97%......................91%
1 year..................................88%......................83%
3 year..................................68%......................64%
5 year..................................52%......................49%
10 year................................31%......................24%

* UPMC data is for following years: 3 months and 1 year, 2003-2004; 3 years, 2001-2004; 5 years, 1999-2004; 10 years, 1993-2003.** National Average (UNOS) data is for the following years: 3 monthd and 1 year, 2002-2003; 3 years, 2000-2003; 5 years, 1998-2003; 10 years, 1993-2003.

Article from: http://www.upmc.com/Services/TransplantationServices/TypesofTransplants/Lung/

Thank you!

Thank you all so much for your flattering comments about my new style. Yes, we did color it too. I had wanted blond with red highlights, but got strawberry color instead, oh well.

Yesterday was another quiet day. I slept quite a bit, so I am feeling more rested today. My friend Julie, I spoke of her in an earlier post, (she is waiting for multiple organs) got some discouraging news yesterday. Please pray for her strength and for her doctors to make the correct decisions regarding her care. My heart just goes out to her and her mom.

Today it has been 4 weeks, it is hard to believe we have been here that long, but I truly feel my time is coming soon. The sun is shining today and my spirits are high, good news is right around the corner!

With love and friendship, Nancy

New Hair

Well, after my recent hospitalization, I realized my hair was too long and needed to be chopped, so today, I made a drastic change and got it all cut off. It is going to be so much easier during my hospitalization post-transplant, and actually, I think it is kind of cute in a pixie sort of way. As I told my dad, it is only hair, it will grow back! I thought I would share my new look with you. Sorry, Hannah, I know you liked it long so you could play with it. : )

God Bless You All!! Nancy

Home again, home again...

I was released from the hospital at 11:00 this morning. I came right home to Family House and went to bed. I was transferred to a different room last night at 10:30 and didn't really get settled until after 1:00 a.m., so I am very tired. It is good to be back at Family House; my friends here gave me a warm welcome home.

Sunday, May 25th

Just a quick update. I am hopeful I may be released from the hospital tomorrow, but we will see how tonight goes. It was a beautiful day here today and I was able to sit out in the hospital courtyard for about an hour. The baby birds were out of their nests and I so enjoyed watching them trying to learn from their parents. What would we do without parents to guide, comfort, and care for us? (Especially at times like this, I am so thankful to have my parents by my side!)

Please have a safe and relaxing Memorial Day! All my love, Nancy

Special Request

I have a very special prayer request. My oldest nephew Kevin, who is 14 and lives with his mom in Germany, had a bad accident on his bicycle. He broke several bones in his hand and required surgery. He is now home with casts on both arms. He is a tough kid, but I know he is in pain right now. Please pray for Kevin that he can find relief from his pain and for his mom, Mona. It is very difficult to see your child so uncomfortable and not be able to take away the pain.

I love you, Kevin! I hope you had a happy 14th Birthday. Keep your chin up, I'm proud of you for being so brave! Aunt Nancy

Quiet Day

Today was a quiet day. I did have some bleeding this afternoon, but it wasn't too bad. I am not sure when I might be released. The doctors have added two additional antibiotics, so any infections that might be simmering better watch out!

My spirits are up. Scott keeps reminding me that each new day is another day closer to my miracle of new lungs. That is a great way to look at things!

I hope you are all enjoying the holiday weekend. It figures, the sun finally came out in Pittsburgh when I came to the hospital. At least it makes my room cheerier!

Hospitalized Again

Well, today has been an eventful day. I woke up at 3:30 a.m. to a pretty severe bout of lung bleeding. It took me about 30 minutes to get it under control. I called my transplant coordinator when I woke up this morning and he told me to go to the ER. I finished my 9:00 IV and we headed to UPMC. We spent the next 7 1/2 hours in the ER until a bed became available. I am now finally settled in a room. The good news is, my white count did not appear to be too elevated which means the IV antibiotics are still working (I feared I may be becoming resistant to the antibiotics). They will keep me here for observation tonight and we will see what the plan is tomorrow.

Wouldn't it be great if my lungs came while I was here in the hospital? That would certainly save some stress! Nancy

Thank God for the Boomer Esiason Foundation

I got some wonderful news today. The Boomer Esiason Foundation has paid for our "rent" here at Family House through early July. This is such a financial relief and I am so grateful to them!

I have really struggled today. Yesterday's rehab. really wore me out. I am hopeful I will be able to go tomorrow, but am unsure if I am going to feel well enough. We will see what tomorrow morning brings.

Keep those wonderful prayers coming! Love, Nancy

Thursday, May 22

Hello Friends!

I am sorry I didn't post yesterday. I had Pulmonary Rehab at 12:30 for about two hours and it wore me out for the rest of the day. I have been having some lung bleeding following rehab., so we are going to take it a little slower on Friday.

It has been rainy and dark here, I think we all need a little sun to brighten things up. The weekend looks like it will be an improvement, so hopefully I will get a chance to sit outside again.

Please pray for my continued strength. "He will yet fill your mouth with laughter and your lips with shouts of joy." (Job 8:21) My joy is coming, I just need to pray for patience.


Please know I love you and am forever grateful for your prayers! Nancy

Tuesday, May 20

I don't have much to report today. Things have been quiet here. I needed a day of rest, so that is what today has been. According to my Transplant Coordinator (Paul, the most awesome coordinator EVER!!!) there were two transplants over the weekend, so maybe my time will come soon. Mom and I discovered the library here at Family House today and feel like we hit a gold mine, lots of great books to read while we are waiting.

Speaking of books, I just finished reading "The Power of Two: A Twin Triumph over Cystic Fibrosis" by Isabel and Anabel Stenzel. If you would be interested in learning more about life with cystic fibrosis, this is a wonderful read. I couldn't put it down; I felt as if I was reading about my two best friends. They really captured both the struggles and the triumphs of CF. Special thanks to my friend Lara who sent me the book!

I hope you are all having a great start to the week! All my love! Nancy

Portville Central is the BEST!!!

Hawaiian Day at Portville Central

It sounds like Hawaiian Day was a huge success! My friend Lynne, who organized the day, wrote, "This is amazing! I have been at PCS for 13 years and have never been so proud! You have touched so many lives." Believe me, PCS, you have touched my life in a BIG way! Thank you all so much for your love and support. I wish I could post all of the awesome pictures Lynne took.

Our Weekend Camping Adventure

I am happy to report, I survived our weekend camping adventure. It poured rain almost the entire weekend, so I really struggled with the dampness and my lungs, but being with my Hannah and Scotty made it well worth it! This was our trial run with our new, to us, RV and it really worked out fine. I was able to continue all of my therapies and enjoy some much needed time with my family.



Unfortunately, the time flew by and Sunday morning was here before we knew it. Hannah and I had a hard time saying goodbye to each other and I have to admit, I was down all day, trying to fight my heartache and tears (see, I have sad days too : ) ).



I was exhausted and running a fever last night, so obviously, the weekend took a toll, but I enjoyed every minute of it!



(Obviously we wore Hannah out, too!)


I started pulmonary rehab. today and was there for 1 1/2 hours, so I am tired and sore. Hopefully, though, it will help me to stay strong while I wait for that blessed phone call.


Today is Hawaiian Day at Hannah's school, I am looking forward to getting pictures and sharing them with all of you. Hannah brought all kinds of goodies from Portville Central. We had a great time reading all of the cards and greetings, opening gifts, and sharing candy.


I hope you all had a wonderful weekend. Maybe this will be my week!

All my love! Nancy

A Day in My Life at Family House

Just in case any of you are worried that I am bored here at Family House, I thought I would ease your mind with a day in my life.

9:00 a.m. Drag out of bed to do IV therapy, my breathing treatments, and my VEST.

9:45 a.m. Breakfast downstairs in the Dining Room.

10:30 a.m. Another IV treatment.

11:15 a.m. Bath and an attempt at washing my hair by kneeling in the tub and running my head under the sink. (While on IVs I can't shower.)

12:00 p.m. Lunch.

12:30 p.m. More respiratory treatments.

1:00 to 3:00 p.m. Rest Time.

3:00 p.m. Another IV treatment.

4:00 p.m. If the weather is nice, we try to sit out on the front porch and read until dinner.

6:00 p.m. Dinner.
6:30 p.m. IV therapy.

7:15 p.m. Breathing treatments and VEST again.

9:00 p.m. IV therapy.

10:00 p.m. Bedtime!!!! Start my feeding tube treatment (that runs through the night).

2:30 a.m. IV therapy.

3:15 a.m. IV therapy.

9:00 a.m. It starts all over again! See, nothing boring about my day! : - )

Thursday, May 15

I had an appointment with Dr. Pilewski this afternoon. It went well. We decided to continue IV therapy for at least another week. He is such a wonderful man and started the appointment by apologizing that I didn't have lungs yet. Can you imagine? That is just the kind of caring person he is, I am very lucky!

Hannah and Scott come tomorrow, hooray!!!

Love to you all! Nancy

My Hannah

When I woke up from my nap this afternoon, I was greeted by a wonderful surprise waiting for me on my e-mail. Two pictures of my little girl, taken this morning.

What a wonderful way to brighten up a dreary and tired afternoon!

Only two more days and I will get to hold her in my arms, I get excited just thinking about it!

Thank you for all of the cards and e-mails. Getting mail and e-mails is the highlight of each day for me!

Love to you all! Nancy

Wednesday, May 14

Yesterday was a beautiful day here, so we decided to take another adventure. We found a lovely shopping area along the Monongahela River where we had a late breakfast and then did a little shopping. Unfortunately, there weren't any wheelchairs to rent, so we will have to go back after Scott and Hannah bring my wheelchair to explore the shops further. I did find a Children's Place and had a lot of fun picking out some summer outfits for Hannah, as well as a bikini (she has been wanting one, but I hadn't found one I liked anywhere else). She was very excited when I told her she could try it out this weekend in the pool at the campground.

I am tired today, so it will be a day of rest. Tomorrow I see Dr. Pilewski for my follow-up appointment after my hospitalization, so we will see if I will need to continue the IV antibiotics or if I will be able to finish this weekend.

I hope you are all having a wonderful week. Remember to appreciate the little things and look for the blessings each day brings! Love, Nancy

Thank you to my friends at PCS!!!

We are so lucky to have such a loving and supportive school. Thank you to all the faculty, staff, and students at Portville Central! You are all so terrific!

Wish I could wear a hula skirt and join you!

All my love! Nancy

Monday, May 12

I hope you all had a relaxing and enjoyable weekend. We were able to go out to lunch yesterday for Mother's Day and visit Scott's and my favorite store, IKEA. It was fun to show my parents around IKEA, since we talk about it all the time, but the magic just wasn't there without my Scotty.

When we got home, I was exhausted and continue to be tired today. My parents headed out to a lung transplant orientation class at the hospital. I had hoped to go with them, but just didn't have the strength. Scott and I attended the class back in October.

I have a cute story to share. Last night when I talked to Hannah on the phone I told her to pray extra hard that my lungs would come this week. Her response was, "Your lungs can't come this week, if they do, you won't be able to camp with us this weekend!" (Scott and Hannah are bringing our little camper and staying at a campground nearby this weekend. We are hoping I will be able to stay with them Friday night.) My sweet little daughter! As much as I'd love to "camp" with them this weekend, I would much prefer to be recovering with new lungs!

Well, I need to go back to bed, but please pray extra hard that my lungs may come this week. I am ready to move forward!

With love and prayers, Nancy

Happy Mother's Day!

Motherhood is the best gift God could have given me. My Hannah is my joy, my inspiration, and my life. Loving her is the closest I will ever come to understanding God's love for me and I am overwhelmed by it!

I am also so thankful for my own mom. What an amazing and wonderful woman she is. She has shaped me into the woman I have become and has always been my best friend and hero. I pray that I can be as good a mom to Hannah as my mom has been to me!

I hope all of you mothers have a wonderful day. You are blessed and appreciated, even though it may not always be spoken.

May God bring you special blessings today!

Family House: A Place for Miracles

Well, yesterday officially wore me out, but it was well worth it. Luckily it is very quiet in the bedroom, so I can sleep any time I need to.

As much as I want my new lungs to come soon, I feel so blessed to have this time at Family House. From the outside this just looks like an ordinary apartment building, but inside, it is so much more. When you walk through the doors you walk into an environment full of friends. It does not matter what your situation, who the patient is, or where you are from; there is a true sense of togetherness. Everyone has a story that they want to share and others are eager to listen. It is an amazing place to both learn and share lessons, to be inspired, and to inspire.

If only there were Family Houses everywhere we went. Where people were not afraid to smile at each other, to ask how you are and really mean it, to have someone to listen and care. It is in a place like this we truly see the work of God in others, we see the strength of the human spirit, and we realize that we truly are all children of God!

My illness has brought me so many blessings. I have been touched by and able to touch others in a way I never could have imagined. I received a card yesterday from a church in Oregon, signed by several of its members; people I don't even know and who don't know me, yet they are praying for me AND my donor.

This morning I had a visit from my friend Amy's (Hannah's 3rd Grade teacher) sister-in-law who works at the hospital across the street. She was so kind and sweet, genuinely wanting to do anything she could to help us. Again, someone who has never met me before going out of her way to visit and offer her support and friendship. How AWESOME is that!

My love to you all! Nancy

Botanical Gardens

Today we decided we needed a change of scenery, so we found a beautiful Botanical Garden nearby and spent the afternoon there. They had an amazing garden full of butterflies that Hannah would have loved! There were boxes of hatching butterflies and we actually got to see one coming out of its cocoon, it was truly amazing!

There were tropical forests, and a Japanese garden with Bonsai Trees that were incredible! We even got to take a trip to Thailand. It was just what we all needed, and well worth missing my afternoon nap for! Unfortunately, Hannah and Scott will not be able to visit this weekend, but I will celebrate Mother's Day with them next weekend and with my mom (and dad) this weekend.

Happy Mother's Day to all of you moms! All my love! Nancy

May 8, 2008

Well, it has been a relatively uneventful day. I haven't been quite as tired today, so that is very good.

My mom and I had a lovely conversation with a mother and daughter who are also here awaiting transplant. The young woman, Julie, is 27 and will be having a stomach, pancreas, liver, and intestine transplant. She is literally skin and bones and hasn't been able to eat in years. She wears a backpack with fluid that goes into her veins to give her nourishment, yet joy shines in her eyes.

Why is it that those who are suffering so greatly can find peace, yet those with nothing to complain about are miserable? Perhaps we all need a taste of suffering to bring us closer to God and to humble us when dealing with the minor trials we face.

Julie and her mom arrived at Family House the day before we did, and she and I have decided we are both going to pray for each other to get a miracle very soon.

It is amazing to connect with others who are feeling what I am feeling; who are hurting and sick, yet keep pushing on. Faith is a wonderful thing, it truly can get us through anything.

God Bless You All! Nancy

May 7, 2008

Hello!

Just a quick note. I have been exhausted today and spent most of the day in bed. I did get out and sit on the front porch here for a little while this evening, that was lovely!

Still waiting for lungs, hopefully they will come soon.

Love to you all! Nancy

Back at Family House

Hooray, I was released at 3:00 today and am settled back at Family House. The home health nurse came with all of my supplies and I am set. I have a crazy IV schedule, good thing I don't have anything better to do.

I am looking forward to a good night's sleep, I don't have to get up until 3:00 a.m. to do an IV treatment, so I can at least get some undisturbed sleep until then.

Love to you all! Nancy

May 6, 2008

Dear Friends,

The word is that if they can make all of the arrangements for home care I will be released today. Because we are working with new companies here in PA, it will be a little more complicated, but the nurse said she would do her best to get it arranged for today.

I asked the doctor how this affects my status on the list. He said being on antibiotics will not affect them transplanting me, so I should still be active on the list. That is a relief, I wasn't sure if this was going to put me on hold again.

My father arrived in Pittsburgh late last night, so now we will have a car, which will be a little less stressful with transport to and from the hospital. It will be nice to have both parents here to support me, but I sure do miss Scott and Hannah!

Keep those wonderful prayers coming, they are wrapping me in God's comfort. Nancy

Monday, May 5

Let me start this beautiful Monday by sharing that Hannah caught her first fish on Saturday. She was very excited and her daddy was very proud. They also finished the floor to a tree house they have been working on, so they had a fun and busy weekend.

My fever returned yesterday afternoon, but I am back to normal this morning. It sounds like I will be able to be released back to Family House on home IV therapy as soon as the fever is gone and I feel ready. There are several patients with resistant bacteria in the hospital right now, so my doctor wants to get me out of here as soon as possible.

The sun is shining, my mom is with me, and I am starting to feel better. What a good way to start the week!

I wanted to share a quote I recently saw that I think is terrific:

"Every human is a mirror in which God hopes to see HIMSELF"

I have seen God daily in the love given to me by all of you! Nancy

Pneumonia Again

Well, we had a small set back. My mom and I had to come to the Emergency at UPMC yesterday. I was having a lot of discomfort with breathing and was running a high fever, so my transplant coordinator told me to come to the ER. I was admitted to the hospital with pneumonia, yet again! The good news is, they had feared the pain in my lungs might be caused by a blood clot, but a CT last night showed no signs of a clot in my lungs.

I am feeling a little better this morning and the fever has finally gone, so hopefully we caught it in time for me to make a quick recovery. I will see Dr. Pilewski tomorrow and hopefully get a sense of what my treatment plan will be. For now, they are trying some new IV antibiotics, so we'll see how well they work.

I will keep you posted. Nancy

Settled in Pittsburgh

We arrived here yesterday in plenty of time for my 2:45 doctor's appointment. It was horrible leaving Hannah, but I know this will change both of our lives for the better. She and Scott will visit as often as they can.

Everything is a go for transplant; I was officially re-activated on the list this morning. I am not feeling well at all today. I probably overdid yesterday, so I am trying to just rest.

I did have a very exciting thing happen last night. I got to meet a young woman from Idaho who also has CF and received a double lung transplant here in December. I had learned about her in February and we had e-mailed a few times, and yesterday when I checked her blog, I realized she had an appointment with Dr. Pilewski too. God works in wonderful ways, I happened to see her and her husband in the kitchen last night and found out they are our next door neighbors. We had a wonderful visit and she shared a lot about what I will be facing. She is beautiful, healthy, and full of energy post-transplant. What an awesome inspiration for me.

I have posted the address here at Family House and the phone number for those of you who had requested it.

Now we just need to pray and put everything into God's hands. When the time is right, my miracle will happen.

God bless you all! Nancy