Welcome friends and family!
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.
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.
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
Tuesday, September 30, 2008
Saturday, September 27, 2008
I hope you all had a happy day too! Nancy
Thursday, September 25, 2008
Leslie, Lydia, and Simon stopped over while Aunt Jan was visiting. I always love to see my cute niece and nephew. Lydia was recovering from a bee sting and Simon was into everything (I was informed by Hannah after school that he was not allowed in her room anymore!).
Tuesday, September 23, 2008
In the last few days, Jesus' words from the cross have come to me over and over. How I want to cry out these very same words, even though I know, as Jesus certainly did, that I have not been forsaken; my God is with me always. Our human minds cannot possibly grasp the greatness and perfection of God's plan and often circumstances in our lives seem too difficult to bear, yet we must fight on.
I received some discouraging news today. My dear friend Betty has been diagnosed with a brain tumor. Though she is not sure if it is malignant, it is certainly a possibility we must all face. She was kind enough to share this news with me herself, and was so calm and at peace as she told me.
Any of you who know Betty realize that she is a true angel on earth and a woman of great faith. Even before our friendship blossomed, she always sent me cards when I was sick or in the hospital. That has been one of her amazing ministries, sending cards with words of encouragement to those who need them.
Betty is the one who encouraged and inspired me to write A Journey Toward Spiritual Peace. An amazing author herself, she was willing to listen to my ideas, read my drafts, and give me kind, but honest criticism. I have been so blessed by her friendship and always smile when I see the subject: Friend Stuff in my e-mail inbox because it is a message from this lovely lady.
Betty has sent so many prayers to heaven for so many worthy people and I ask you now to pray for her and her family. Though Betty is at peace with where she is, it is not easy for family members to accept our failing health.
Please, be with this wonderful family, Lord, bring them comfort, peace, and encouragement. Bring Betty the physical strength to handle whatever medical struggles may come and the continued peace of knowing she is in Your hands, loved and protected.
I hope you have listened to the words to my latest blog song, Anyway, by Martina McBride. My friend Rose sent me this album (specifically for this song) during one of my emotionally low times and its words helped me...
I have often shared with you times when God has truly intervened in my life. After I spoke with Betty this morning, I was feeling so sad. I have been putting off getting my Driver's License renewed, (the dreaded trip to the DMV!) but decided when I woke up from my nap that I had to bite the bullet. Mom took me to the DMV (Which was surprisingly quiet with no wait time, thank you God!) and then we had to stop at K-Mart to pick up some prescriptions. I didn't feel up to going in with her, so I stayed in the car, and I couldn't believe my eyes when Betty and her husband Eric pulled into a spot close to ours. I haven't been able to see Betty for a while, with both of our health issues, and have missed her smiling face. I was able to climb in the car and visit with her for a few minutes until my mom came back and it helped my sad heart so much! (Thank you, God!)
God is GREAT, but sometimes life ain't good... but we need to keep living Anyway!
All my love! Nancy
Monday, September 22, 2008
Women and Children's Hospital highlights sophisticated new approach
By Henry L. Davis
Most people don’t think about breathing unless something goes wrong. Tyler Blake and others like him don’t have that luxury.
Born with cystic fibrosis, Blake has lungs that fill with thick, sticky mucus, making respiratory problems a constant issue and potential threat to life. Recently, a hole developed in his lung, and air began to leak into the chest cavity. He deteriorated even though doctors tried everything in their arsenal, including multiple chest tubes, surgery to remove damaged lung tissue and constant reliance on a mechanical ventilator.
But Thursday, a grateful Blake sat quietly at a news conference in Women and Children’s Hospital, as the medical staff explained the extraordinary steps they took to save him — including getting federal approval making him the first patient in the nation to benefit from a new treatment. “I wouldn’t be here if not for that device,” said the 26-year-old resident of Celoron, near Jamestown.
He was referring to a machine a few feet away about the size of a desktop computer that uses a novel technique called biphasic cuirass ventilation to help patients breathe. That’s a fancy way of saying that, unlike a typical ventilator that pushes air into the lungs through a tube, this non-invasive device fits like cushioned body armor around a patient’s chest and externally supports natural inhalation and exhalation.
Studies suggest it can be an effective alternative to or complement a breathing tube for people with respiratory failure, such as those with asthma and chronic obstructive pulmonary disease.
The technique senses and responds to a patient’s breathing efforts. For cystic fibrosis patients, who have just as hard a time breathing out as in, the device also helps bring up the phlegm that clogs their airways.
Blake was admitted to the hospital July 8 and underwent one treatment after another without making much progress. The situation began to grow desperate. “He was getting sicker and sicker, and less likely to tolerate more procedures. We felt we were nearing the end of what we could do for him,” said Dr. Joseph Cronin, director of the hospital’s adult cystic fibrosis program.
The Medivent RTX is available in Europe but awaiting approval by the Food and Drug Administration for use in the United States. Cronin, who was familiar with the technique’s results in other countries, applied to the FDA for special “compassionate use” of the device.
Medivent International in London, England, loaned Cronin and his colleagues a machine; the hospital agreed to let them try it; and the FDA gave its go-ahead for just this one patient, the only one in the United States.
With everything in place, Cronin initiated the therapy Aug. 18 in combination with a standard ventilator. “The change was dramatic within 24 hours,” he said. It allowed the staff to wean Blake off the invasive breathing tube. That, in turn, allowed Blake to eat solid foods and sleep more comfortably. Within two weeks after treatment, previously necessary medications were discontinued, and his chest tube was removed.
The device is considered an alternative or complement to standard ventilators and their complications for a number of conditions, including asthma, pneumonia and Duchenne muscular dystrophy. For cystic fibrosis patients like Blake, it also can serve as a bridge to a lung transplant. “The RTX is very versatile. It could change how to treat patients with respiratory failure,” Cronin said.
An estimated 30,000 children and adults in the United States suffer from cystic fibrosis, according to the Cystic Fibrosis Foundation. With advances in treatments, many people with the inherited disease now live into their 30s, 40s and beyond.
Medivent expects FDA approval of the device within a few weeks, officials said.
Friday, September 19, 2008
It was also wonderful to see so many familiar and smiling faces from the Portville Community. Everyone seemed genuinely happy to see me and that really made my night! We are so blessed to have a terrific school and community.
I hope you have all had a wonderful week and can enjoy a relaxing weekend! Nancy
Thursday, September 18, 2008
Well, I think I am officially all slept out! After sleeping 20 hours on Tuesday, you would have thought I would be energized yesterday, yet I woke up tired and slept even more. I did start the IVs yesterday, and though it may be wishful thinking, I do think I am feeling a little better this morning.
This evening is Meet the Teacher night at Hannah's school. I am really hoping to be able to go. Hannah had to make a terrarium that is due this evening at the event. What a great project! She and her friend Taylor had the best time gathering plants, rocks, flowers, leaves, etc. to make their terrariums, then Scott helped them put everything in big plastic containers. I love it when the kids can learn something and have fun doing it!
Hopefully I will be able to let you all know what a great time I had meeting Hannah's teacher tomorrow! All my love! Nancy
Tuesday, September 16, 2008
Monday, September 15, 2008
Saturday, September 13, 2008
I wanted to introduce you to Kelly. She is the nurse coordinator at Dr. Pilewski's office and she has been SO GOOD to me! I have had the good fortune of having wonderful nurse coordinators, like Carol Wood during my Salt Lake days and my good friend Jeanne Smith at Women and Children's Hospital in Buffalo. I don't know if these ladies always get the credit they deserve, but they are the ones who have really kept me going all of these years and they deserve so much thanks and credit for a job WELL DONE!
I was hoping to be able to post a picture of Dr. Pilewski, but due to scheduling conflicts, I was only able to see him briefly on Thursday. Hopefully next time I can share his picture with you.
I was only able to see Julie for a few minutes yesterday morning before we left. She is hanging in there and it was good to see her and her mom!
I hope you all have a wonderful weekend. I will check in on Monday when I have news about the updated labs.
All my love! Nancy
Thursday, September 11, 2008
May we all take a moment to remember those who died on 9/11. Scott and I were discussing how much has changed since that fateful event. Remember the sense of community, the outpouring of love, and the national pride we all experienced? Cars and homes were flying our American flag and people were proud to call the USA home. It is unfortunate it took such a horrible disaster to make us all realize how lucky we are.
With the upcoming Presidential election, it is often difficult to remember, we are not Democrats, Independents, or Republicans, we are Americans, and we need to stay united despite our differences.
Wednesday, September 10, 2008
Love to you all! Nancy (We all have to try to keep a sense of humor, don't we?)
I had to include this cute picture of Hannah taken this morning. She absolutely loves 4th Grade, Hooray!
Tuesday, September 9, 2008
As you can see from the pictures, she is my lap buddy a lot of the time, my bed buddy at night and in the afternoons, and all of the rest of the time a little menace (at least that is what our two boys, Cracker and Jasper, would tell you). But we all love her very much!
I continue to sleep A LOT, it just doesn't seem like I can get enough rest. The good news is, I am still infection free and I am going on two weeks without IVs, boy my little body is fighting for all it is worth, GO ME!
Although I am looking forward to seeing my friends in Pittsburgh on Thursday, I dread the trip, knowing how much it will take out of me. I am hopeful Dr. Pilewski might have some ideas to help with my exhaustion and nausea; my quality of life just keeps deteriorating.
Just keep those prayers coming, they help me more than you could ever know!
All my love! Nancy
Sunday, September 7, 2008
I am so excited to be able to post a video of Hannah dancing. She performed with the Olean Area Irish Dancers over the weekend at the Irish Festival here in town. I did not feel well enough to attend, so Scott took some video with our camera. I had no idea I could actually post this, but started playing and there it was. I hope you enjoy watching her dance as much as I did!
I hope you all had a relaxing weekend and are ready for the start of a new week. Don't forget to live well this week, for me, but more for YOU!!!
Love you all! Nancy
Friday, September 5, 2008
I have been trying to think of a positive way to explain how I have been feeling this week, but I honestly just don't know how. All I can think about is sleeping, from the moment I wake up until I go to bed at night. I have been trying to make myself stay awake for small stretches during the day, but this has almost become painful. I realize my body needs sleep now in order to maintain the energy to fight on its own, but it is discouraging to sleep each day away, especially when the weather has been just beautiful.
I do a lot of praying, especially for others who I know are suffering. This gives me a purpose and a distraction from my own struggles.
I would ask each of you to live for me, today, tomorrow, and next week. Enjoy the things you are able to do. Appreciate EVERYTHING, even that trip to the grocery store and cleaning the bathroom. What I wouldn't give to do those things again!
Please do not feel sad for me, I am living the life I have been given and will continue to fight until it is my turn to join my heavenly Father. I know there are two kinds of miracles that could await me, one of them will bring earthly life, but the other will bring eternal life; either way, I will continue to be greatly blessed!
I love you all so much! Nancy
Wednesday, September 3, 2008
I had blood work done yesterday, and my white count, though climbing, is still okay, so we are going to continue to hold on new IV antibiotics. This is good, yet hard on me, because without the IVs to help, my body is fighting so hard it can barely function. We go back to Pittsburgh next week, so hopefully I can at least stay infection free until then.
Hannah had a wonderful first two days of school. She really likes her new teacher and it seems like she will have a terrific year!
Love to you all! Nancy
Tuesday, September 2, 2008
Yesterday, Scott asked me to go for a ride on his motorcycle with him. I don't remember the last time I rode and honestly didn't feel well enough to go, but knew it would make him happy. I took a pain pill, strapped on my oxygen, and we hit the road. I am so glad I went!
It was a beautiful day, there was very little traffic, and we rode on some of the most lovely wooded back roads in our area. I felt so alive. While we were on that bike, all I could do was drink in the wonderful surroundings, feel the wind wash over me, and thank God for all that He has given me. I forgot how sick I have been feeling, how tired, how low, and basked in the glory of the day and the feeling of my husband close by and protective. I never wanted that ride to end.
Please, take the time in your own lives to find that release; to escape from your everyday cares and worries and just enjoy life and living! It will bring you a renewed sense of energy and strength to face the struggles of tomorrow.
Love to you all! Nancy