Rounds Inspirational Journeys

I saw this link on my friend Jamie's website and had to pass this video along. It moved me to tears. What a lovely example of a father's love! I would encourage you to watch it. http://www.godtube.com/view_video.php?viewkey=8cf08faca5dd9ea45513 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

Hello! We still do not have a diagnosis, but I did have a CT of my chest last night and an MRI of my head this morning, so hopefully the results of one of those will give the doctors a clue as to what is going on; I dread the alternative of the spinal tap, but I will do what I have to. 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 ...

I got this picture in an e-mail today from my friend Terry and thought it was too cute not to pass along. It also brings a little fun and cheer to my blog. 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

Well, I feel like I am on an episode of House (luckily, House isn't my doctor though, if he were I'd be in tears all of the time!) We are having difficulty figuring out what is going on with me. Although I do have some signs of sinusitis in my upper sinuses, no one is convinced that is the cause of my fevers and headache. I did have an ENT evaluation yesterday and my sinuses were swabbed, but the results of those test won't be back for 2 to 3 days. The fever has returned, along with the headache each evening. Today they are going to test my CO2 levels and I am going to repeat the 6 minute walk. 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

Hello friends, 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 ...

I have been searching for a good article that gives a comprehensive overview of CF and transplantation. I think this one does a great job. It is from a medical journal, so it is lengthy and uses some medical terminology, but if you are interested in learning more, I recommend you read it. Title: Advances in Lung Transplantation for Patients Who Have Cystic Fibrosis: Clinics in Chest MedicineURL: http://www.mdconsult.com/das/journal/view/0/N/19487109?ja=581041&PAGE=1.html&issn=0272-5231&source=

Hello! 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 vi...

Dear friends, 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

Dear friends, Would any of you be willing to donate some time running a table at Farm City Days or Rally in the Valley?  Ruth Palmquist has reserved a table at these events to sell my book, water, pop, and snacks, all to help with my medical fund.  If you would be interested, the times she needs volunteers are: Farm City Days:            August 2 from about 9 to 5 Rally in the Valley:            August 15 from 5 to 11            August 16 from 11 to 11            August 17 from 11 to 6 I would appreciate any help you can offer.  To volunteer, please contact Ruth at 372-6369. Thank you so much!!!!!!  Nancy

(Hannah & Me at Icecream Island in Portville taken by Ruth Palmquist ) Happy Monday to you!  I hope you had a wonderful weekend.  We did some partying this weekend with my sister-in-law and her family.  Saturday they had a party for the Olean General Hospital Emergency Room, Jeff is a PA there, and we were invited (that seemed only fitting since I keep them in business).  Leslie and Jeff outdid themselves with the food; I told them they should go into catering.  Sunday, we were invited for a repeat of leftovers that were just as good as the day before.  I was so thankful that my appetite has returned thanks to the IVs. I took a trip to Walmart with Scott last night and used one of their scooters.  I couldn't tell you the last time I was in Walmart and it seemed so nice to be able to just buzz around and look at things on my own without someone pushing me.  Today is my last day of IV antibiotics and I must admit, I am dreading what this week is going to bring.  I am just gr...

Happy Friday! It is hard to believe another week has gone by. I have been lax in posting this week for a very good reason, I have been too busy. With the IVs finally doing their job, I have been able to function again and it has been wonderful! I enjoyed a "walk" with my family at dusk the other evening through the woods. It was amazing how well my scooter handled the trail. 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 wonderf...

Hello! I hope everyone had a good weekend.  My parents went to Niagara Falls, so we had a quiet family weekend. My IV antibiotics have been extended another week, to my relief.  I really do so much better when I am on them, even though I feel like all I do is sleep and run IVs. I spoke with Julie today and she continues to do well.  The major issue for her right now is her liver which has some clotting forming around it.  The doctors are afraid to open her up this soon to remove the clots, so they are hoping her body will absorb them, please pray that occurs.  It also sounds like she is going to need a liver transplant at some point.  When they got in there for surgery, her doctors realized her liver was worse than they had originally thought.  But, one thing at a time.  For now she is upbeat and doing well.  Her drainage tubes were removed today, so she has more freedom and she seemed very happy about that. Enjoy the rest of your day!  Nancy

I am so glad to let you all know that my smile made a return trip to my face yesterday and hasn't left since. The humidity was down yesterday, so I was able to actually go outside and watch Hannah jump on the trampoline and swim in the pool. We even went for ice-cream last evening. To top yesterday off, I got a call from a friend of mine in CA who is also a mo m with CF awaiting a lung transplant at UPMC . We have been communicating via e-mail, but this was our first phone call. It helps so much to be able to speak with someone who is going through the same thing you are and to be able to openly share fears, struggles, and dreams of what is to come. Cammi, you truly brought a smile to my face! Today, Scott brought home a special treat. He and the guys at his company fixed up this little scooter for me. It is able to drive down our bu mpy driveway and all over the lawn. It is so much fun and will give me the freedom to go next door to my mother-in-law or sister-in-law's with...

My dear friends, I know you worry when you don't hear from me for a few days and I apologize for leaving you hanging.  Although the IVs are making me feel better (no more fever and a better appetite), I have been extremely exhausted and have been sleeping quite a bit.  I have to be honest, it is discouraging spending such beautiful days sleeping, but my body is tired and obviously in need of extra sleep.  I have a hard time staying mentally up when I am so tired, but I pray each day for continued strength and patience. I wanted to thank you all for the positive responses you gave to my posting on becoming an organ donor.  I am so proud of you for taking this issue so seriously and was thrilled to hear that some of you had also added organ donation to your licenses.  What a beautiful gift you are giving to those of us in desperate need! I hope you are all well.  Please know that you are in my heart and my thoughts daily!  Nancy

Thank you to my friend Pat for sending me the link to this article, I wanted to share it with all of you. Pittsburgh Tribune Review Family House comforts, strengthens patients By Chris Togneri TRIBUNE-REVIEWSunday, July 6, 2008 Julie Trahan was scared and homesick. She had not eaten solid food in 18 months. Her weight plummeted to just under 70 pounds. Several organs were failing, and she was too weak to get out of the car. But as her mother went inside Family House Shadyside and signed papers clearing the way for an indefinite stay in Pittsburgh, Trahan, 28, of Rodman, N.Y., got a good feeling. "From where I sat in the vehicle, I could see little lamps and paintings through the windows," she said. "I thought, 'What have I stepped into? This is going to be good.' "I kept thinking about Christmas for some reason," she said. "I thought, 'Well, if I'm still here, I'll dream about walking down the stairs to a Christmas tree.' We would ...

I hope you all had a wonderful 4 th . 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!

Good Morning! For those of you who know me well, you know not getting an update from me for a couple of days is probably not a good sign.  I have been feeling pretty lousy and sleeping quite a bit.  At first I thought it was just the exhaustion of our trip to Pittsburgh, but by Monday I realized I was just plain sick.  I was able to start IV antibiotics on Tuesday, so I am hopeful things will be looking up.  I just can't seem to function without the assistance of IVs. I do have some wonderful news to report, however.  I had a lovely talk with Julie this morning.  She is doing GREAT and is out of ICU.  She has been receiving Enteral feeds through a feeding tube like mine and has been tolerating that well, so hopefully in the next couple of days she will graduate to a liquid diet.  She told me she was able to get out of bed and walk around her room yesterday.  She sounded strong and happy and I couldn't help but cry with joy for the miracle that has happened for her! Keep up tho...