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
Thursday, July 31, 2008
I had my walk study this morning. It is very telling when you do a physical test like this of the progress of lung deterioration. Today I really struggled to walk 522 feet and had to sit down a couple of times during the 6 minutes. Back in April I walked 900 feet and in October I was able to walk 1200 feet. We are hoping this may increase my lung allocation score to get me closer to transplant, we'll see what happens.
I still don't have results from the MRI, but did receive word that I will need an ultrasound of my liver tomorrow. It looks as though I will be here through the weekend, but I am okay with that, I just want to feel a little better.
Love to you all! Nancy
Wednesday, July 30, 2008
I don't know how many of you followed Randy Pausch's story, but I had seen him back in September on Good Morning America and had been following him ever since. For those of you unfamiliar with him, he was a Computer Science Professor at Carnegie Mellon University here in Pittsburgh who was diagnosed with Pancreatic Cancer several months ago and gave a "Last Lecture" at his University that spread across the country and world through YouTube. Randy passed away last Friday; I heard the sad news in the car on our way to Pittsburgh. I had been really praying that Randy would beat the cancer, both for his family and for all of the people he touched with his last lecture. Last night ABC aired a final tribute to Randy and when it was over, I just couldn't sleep. I finally sat up, opened my computer, and wrote down the thoughts I was having, I would like to share them with you.
A Message for those with Chronic or Terminal Illness:
Have you ever wondered why so many people are drawn to and moved by a Randy Pausch (The Last Lecture) or a Morrie Schwartz (Tuesdays with Morrie)? It is because these men have lived their terminal illness with dignity and joy. They did not constantly ask, “Why me?” but instead accepted what they were given and made the most of it. We are all going to die, but seeing someone who knows he is dying, yet keeps living life to the fullest, brings us hope and a sense of peace; peace despite the inevitability of death.
In the last several months I have had a lot of time to reflect on, and wonder about, the role chronic illness plays in God’s overall plan. I have come to the realization that we may be misinterpreting the reasons for chronic and terminal illness. So many of us feel like we are being punished or that life isn’t fair, but I would challenge you to re-frame this life experience. Could it be that we have been chosen? Perhaps we should feel honored and privileged. Through our attitude about, and ability to cope, with our illness, we can be a model and inspiration to others, a tool God uses to help them appreciate their blessing of health and grow into better people. What an extraordinary gift we can give by living honorably with our discomfort.
If we can each strive to be that role model for others, our experience of illness can become a better and more fulfilling one because we are living out God’s perfect plan for us. May those of us with chronic and terminal illness strive to emulate brave people like Randy and Morrie, learning to live our lives of illness without anger, but instead delight in the life we’ve been given.
Love to you all! Nancy
Tuesday, July 29, 2008
Dr. Pilewski was in this afternoon and we had a nice visit (he is such a WONDERFUL doctor!). He is going to order an MRI of my head to see if there are any signs of other problems, but if that comes back negative, I will probably need to have a Spinal Tap to test for Viral Meningitis. The bad news about this test is that it will most likely make me feel worse and there is no way to treat Viral Meningitis, but at least they would understand what is causing my fever and headaches.
All I can say is, please keep praying. Thank you! Nancy
So, I really don't have any new news to report, we are just hanging out here at UPMC. I'll keep you posted... Nancy
Sunday, July 27, 2008
Sorry it has taken me so long to post today, I have been asleep most of the day. I had a very difficult night with extreme head pain and a fever of 101.7. I was awake until after 3:30 am because of the pain, but was finally given enough pain medication to allow me to settle down and sleep.
In consult with the doctors, we have decided that the way I am feeling may be due to Sinusitus and not a lung infection. I had a CT of my sinuses about an hour ago, so hopefully tomorrow morning I will know what is going on. I am not used to such severe headaches.
Despite the discomfort I am in, I look around at others here and realize how lucky I am. Things could be so much worse. The man in the room next to mine is a quadriplegic. As I lay awake last night trying to deal with my own pain, I wondered how I would cope were I him. I have the ability to get out of my bed, walk to the bathroom, feed myself, and the list goes on and on. We don't have to look far to find someone whose suffering seems so much greater than ours; I prayed for God to bring this man strength and comfort and that when I am suffering to let my memory of him remind me how blessed I truly am!
May God bless you all! Nancy
Saturday, July 26, 2008
Title: Advances in Lung Transplantation for Patients Who Have Cystic Fibrosis: Clinics in Chest
What a great surprise to log on today and see so many wonderful and supportive posts, especially from some long lost friends! (Marybeth, Amber, Ruby... how awesome to reconnect with all of you!)
I am settled at UPMC Montefiore hospital and am just hoping the new IV combination will work and will help me to start feeling better soon. We arrived in Pittsburgh yesterday at 12:30 and were taken right to a room in the ER. I was moved to a hospital room by 3:30, so it wasn't a long wait which was wonderful! The crazy thing is that I am in the same room I was in back in April (It's a "small" hospital).
I have been having a lot of head pain, so hopefully they will be doing an MRI to check my sinuses, though I will not be able to have any kind of sinus surgery until after my transplant. I will feel better just knowing what is causing the pain.
I got a wonderful surprise today. I called to find out what room my friend Julie was in so my parents could stop by and visit her and her mom told me she was discharged on Wednesday and is back at Family House. She was in the hospital exactly one month, a much shorter stay than any of us anticipated. Miracles certainly do happen, she is a living example of this!
Please don't worry about me. I am mentally up and ready to scale this new mountain. With God by my side, there is nothing I can't do!
Love to you all! Nancy
Thursday, July 24, 2008
I started feeling lousy on Tuesday, before my IVs had even ended and by today, I am really down. I have been coughing a lot and am running a fever, so the decision has been made that I need to be hospitalized. My parents and I will leave for Pittsburgh first thing tomorrow morning. Please pray that I have not become resistant to the antibiotics I need.
Love to you all! Nancy
Tuesday, July 22, 2008
Monday, July 21, 2008
Friday, July 18, 2008
I had several visitors on Wednesday, my cousin Bridgette and her four children in the morning, they kept Hannah busy while the moms got to catch up. Then my friend Ruth came in the afternoon and took Hannah and me for a ride in her convertible, with a yummy stop for ice cream.
Yesterday, my dad took me out on the town for a trip to Staples, to Sherwin Williams (I finally picked a color for our bathroom) and a stop at Miller's Farm Market to enjoy the flowers. When we got home my sister-in-law and her family came over for a swim, then we all pooled resources and had a cook out together. What a wonderful few days!
Today is my day to rest, my parents are taking Hannah for a hike at Rock City, so I will have a quiet house all afternoon, hooray! It is very hazy and humid today, so the air conditioned house will be the best place for me.
I really needed the IV boost this week. I was very down and discouraged last week. I am often hesitant to share when I am down, but I think it is important for people to know that it is okay to feel sad, discouraged, and depressed some times. It doesn't matter how healthy or great your life is, you will still have times when you feel like this and it is normal and okay.
One of the things that got me through last week was reflecting on my many blessings. When we are down, we tend to focus on all the negatives in our lives, but by switching our focus to what we have to be thankful for, we can change our whole perspective. Believe me, I have much more to be thankful for than to complain about: I am loved and prayed for by so many people, I have a wonderful and supportive family, I have friends who genuinely care about me, I have a beautiful home that is bright and cheery even on the darkest days, I have a daughter who can make me smile when I am grumpy, I have a husband whose hugs and snuggles wrap me up and make me feel special... I could go on and on. I would encourage you, the next time you're feeling low, to start a list of blessings, you can't help but start to feel better!
My love to you all! Have a safe and wonderful weekend. Nancy
Monday, July 14, 2008
Friday, July 11, 2008
Thursday, July 10, 2008
Monday, July 7, 2008
By Chris TogneriTRIBUNE-REVIEWSunday, July 6, 2008
The nonprofit was founded in 1983 by doctors and civic leaders who said they were tired of watching patients' caregivers sleep in chairs in hospital waiting rooms. Donations and volunteers help to keep it running.
Because of the uncertainty around the surgery, her dad and sister stayed behind in Rodman.
Theresa Lewis said she and her mother are their family's only living members. In 1982, a plane crash in New Mexico killed her father and two brothers. "We're all going to die, but she can't die until I go because I'm the only one left," Theresa Lewis said. "I tell her that the day I die, she can go the next day."
"That feels more in line with our mission," Knott said. "Turning people away -- it's heartbreaking."
But that's not always possible, Bebenek said. For example, she recalled the day Trahan arrived.
"Meeting her -- it kind of choked me up," Bebenek said. "I had to look away. I try not to get close, but how can you help it? I admire these people. Everyone who comes in here is fighting for their life. Yeah, we lose sometimes. But we have many success stories here."
"When I'm married and have children," she said, "I want my children to see this place that gave me hope and the will to carry on, the place that cared for their mother when she needed it most.
"I think that will be a beautiful day."
Saturday, July 5, 2008
I hope you all had a wonderful 4th. We had a lovely picnic at my mother-in-law's and then, after a long afternoon nap, I was able to join my family to go and watch the fireworks. As others were setting up camera tripods, I was setting up an IV tripod; I think I was the only one doing IVs at the fireworks, but you know I always try to be unique! : )
Hannah, Simon, & Lydia had a great time running around in the grass before the fireworks. Boy do I wish I could bottle some of that energy! I think we all slept well last night!
This morning I got a special treat, I was holding Hannah's Guinea Pig, Oreo, and our kitty Jasper decided to join us. Normally Jasper is terrified of Oreo, but I guess he decided if he wanted love from me, he'd have to deal with Oreo. Here we are snuggling!