Rounds Inspirational Journeys

Dear friends, Hannah came home from school yesterday with sad news. The nurse at her school, Jean Feely, had been killed in a car accident on her way to school that morning. What a difficult day for the staff and students at Portville Central. Please keep Jean's family and friends in your hearts and prayers, this will not be the happy Thanksgiving they had hoped for this year. Jean, however, will be celebrating Thanksgiving with God, what a lucky lady! Please be sure to take the time to reflect on all that you have to be thankful for and to praise and worship the God who has given you life, love, and family. May God bless you all and may you have a Thanksgiving full of blessings! Nancy

For the last several months Hannah and I have been counting down to an exciting (for us) event. The release of New Moon, the movie to the second book in Stephenie Meyer's series Twilight. This past Friday New Moon opened in Theaters and on Saturday, Scott, Hannah, and I stood in line for 45 minutes to get in to see the film (I bought our tickets a month ago, knowing this weekend would be sold out.) I don't think I have been that excited about something in a long time. I enjoyed the movie a lot, it was very true to the book, but I have to admit I am still processing it. I think Hannah and I are going to try to go again this Wednesday, maybe then I will have a more concrete feeling about it. I don't believe I have ever mentioned my love for the Twilight Saga here on my blog, which is surprising considering Scott thinks I am obsessed, but I need to explain why this series means so much to me. Do you remember last year when I returned from Pittsburgh? After my parents left I w...

I recieved an e-mail from my CF Center in Buffalo today about this recall. I have B. Cepacia and don't want any other CF patients to have to suffer the consequences of a B. Cepacia colonization. Please read this carefully if you use Vicks Spray. Nancy The Cystic Fibrosis Foundation wanted to notify you of this important recall concerning B. Cepacia in Vicks sinex nasal spray. The Procter & Gamble Company today initiated a voluntary recall of three lots of its Vicks Sinex nasal spray in three countries: the United States , Germany and the United Kingdom . The company issued the recall as a precautionary step after finding the bacteria B. cepacia in a small amount of product made at its plant in Gross Gerau, Germany. Voluntary Recall of Vicks Sinex Nasal Spray by Proctor & Gamble November 19, 2009 The Procter & Gamble Company today initiated a voluntary recall of three lots of its Vicks Sinex nasal spray in three countries: the United States, Germany and the United Kingdo...

Dear friends, I got some exciting news this morning, a new friend of mine, Bill, who also has CF got his call for lungs and is having his transplant today. He has a daughter, almost Hannah's age, and a wonderful wife. Please keep him and all of his family in your prayers. May his surgery be successful and may he recover quickly with as little pain as possible! God is GOOD! He hears us calling and He answers us. Thank you for your kindness and mercy oh Lord! All my love! Nancy

(Picture taken in Ellicottville, NY at the Beer and Wine Festival. I was the Designated Driver for Scott and our friends Holly and Bryce. This was Scott's 4th year in attendance, but this was the first year I was healthy enough to go. We had a blast!) You know I have always tried to be honest here on my blog, so I thought I would share with you my latest struggle. It is a total vanity issue and is so silly, yet is causing me a lot of grief. When my friends and family look at the above picture, they are so sweet and supportive and tell me I look great and healthy. When I look at the above picture I think, "Oh my, how much fatter can my face possibly get!" It seems as though every picture of me taken, my face gets a little bit rounder. Now, this shouldn't bother me. I am healthy, happy, doing things I never dreamed I would do again, yet it is a major thorn in my side. I know I have absolutely no control over it, it is caused by the Prednisone I am taking and will pr...

Hope continues to grow within the CF community. I do believe I will see a cure for CF in my lifetime, now that I have been given a chance to live on! -------------------------------------------------------------------------------- Drug could stop mucus production in cystic fibrosis sufferers Health » VX-770, in final stage of trials, may add decades to lives and shorten daily medical routines. By Sheena Mcfarland The Salt Lake Tribune Salt Lake Tribune Updated:11/16/2009 12:56:50 PM MST -------------------------------------------------------------------------------- Somer Love's typical day is a lot different from most people's. Yes, she runs errands, hangs out with her family and friends and plays with her two pugs, Oscar and Lily. But her day also includes taking more than 50 drugs and supplements, and dedicating nearly three hours to treatments that keep down the level of mucus that can fill her lungs because of cystic fibrosis. "Most girls wake up early to curl their ...

Well, after I posted this morning, I contacted one of the nurse's at UPMC because my swollen glands were really bothering me and there was no mention of swollen glands as a side effect from the bronch. Sure enough, that isn't a side effect, so they sent me to the ER for a CT of my throat and chest. Luckily nothing showed up. They also did a strep and mono test. I am a little nervous about the mono. I have been feeling very tired for several days. I probably won't get results from those test until Monday. So, my day of rest was spent at the ER where for $50 I got a bed, a mask, an IV and a couple of good hours of reading, what a bargain!( I didn't count the CT, because that bill wil come later : )) Hope you all had a better day than that! Nancy

Hello! All went well with my procedure and they were able to open the space with a balloon alone. I will probably have to go back for this procedure again, but at least this first one worked. I am very tired and sore today, my glands in my throat are quite swollen and painful. My throat is also sore, but that is because they had to intubate me during the procedure because of the anesthetic they used. It sounds like there was already quite a bit of mucus build up behind this opening, so I need to get that out as soon as possible, but hopefully with the full opening I will be able to dislodge and cough it out. Thank you for all your prayers. I am going to just take it easy now. All my love! Nancy

Hello! I continue to not feel very well. I am very tired and want to sleep a lot. I slept for 4 hours yesterday when we got home from Buffalo and slept until 10 this morning. Hopefully this will pass soon. It is stressful to feel like this. It brings back too many bad memories. I keep telling myself that this is part of life, I will get sick from time to time, but it will not last like before. I will certainly be relieved when I start to feel better. We will be heading back to Pittsburgh on Wednesday and I will have the procedure to open my airway on Thursday morning. We are hoping this problem is what has been causing the cough I have been struggling with for several months. Please pray that is the case and it will be resolved after Thursday's procedure. I hope you are all well. P.S. If you haven't voted for my blog on Wellsphere yet, please do. I have dropped from 5th place to 12th place in the last week and would love to get back into the top 5, only you can make ...

Hello! I received an e-mail from my doctor today, and I promised I would share: There was a 50% narrowing of one of the segments (branches) of the right lung. Dr. Johnson thought that you should have a balloon dilatation of this (basically another bronchoscopy with anesthesia to put you a bit more asleep). We can arrange this for when it's convenient. This is a common problem that usually resolves after the airway is opened towards normal. The biopsy was negative for rejection. Cultures are negative so far. This is good! We'll be in touch to find a date for you to return, sometime in the next month. I feel better having heard from him, it doesn't sound like this will be any big deal to resolve. I don't want to scare any of you who are planning to get the H1N1 vaccine, because I think it is very important, but I am feeling awful today. I don't normally have reactions to the flu vaccine, but I think that is what this is. I am exhausted and very nauseated, both possib...

You all must be wondering if I dropped off the face of the earth or something. My body certainly feels like it! What a crazy several days! Our trip to Pittsburgh went well. My Pulmonary Functions continue to stay at 92%. There was some concern after my bronch. about the main opening between my trach. and my lungs. That is where my new lungs were sown and the scar tissue seems to keep growing. At this point the opening has closed up 50% since transplant. Obviously, if that were to close too much, I would begin to have trouble with infection, breathing, etc. I am waiting to hear what the plan will be to deal with this, I will keep you updated. We had two wonderful visits, Wednesday evening with our friends Scott & Christina and their 5 children, then Thursday evening with Cammi and her husband Lance. Cammi looks great and is getting better every day. She is struggling with many of the same issues I did post-transplant, so continue to keep her in your prayers. We got home Friday after...