Rounds Inspirational Journeys

I am so excited to announce, Sweet Pea came home tonight! We had spent much of the day searching for her and I just happened to look out the front door this evening and there she was. We are all so excited and she is currently snuggled up in Hannah's arms. What a wonderful miracle for our weekend! I'll post pictures next week. All my love! Nancy

Just a quick post to let you know we arrived in Olean safely last night around 6:30. I am looking forward to a wonderful weekend! My love to you all! Nancy

Hello! Not much to report today, I am still in my jammies which feels like a luxury. We have spent the day organizing and packing things we won't be needing for the next couple of weeks to make the final move home a little easier. I can't believe I will be home tomorrow! I am looking forward to a wonderful weekend! Please take care, Nancy

Good Evening! Let me start with a Sweet Pea update. Still no sign of her. Scott made up fliers and distributed them around the area today. I just hope some family took her in and she is warm and safe. Things went well with my Endocrinology appointment. The doctor agreed that I am the ideal candidate for a pump and they were so accommodating to try to get my trainings in before we move back to Olean . I will return to their office next Tuesday (which will cut our home visit shorter) for a 3 hour insulin pump training class. I am really looking forward to getting a pump, it should help me keep my sugars much better regulated. I even had to take a test today to see how much knowledge I currently have about Diabetes, and guess what, I got 100% (Yeah ME!). Tomorrow we are planning to pack up some things so we can start bringing things home. It is so hard to believe we will be moving home in a couple of weeks. I DO believe in miracles! I hope you are having a good week! All my lov...

Well, we left the apartment at 7:00 a.m. and just got home at 6:00, I am so tired! All of my appointments went well and I am scheduled to get my feeding tube replaced with a button on February 9. In between appointments we took Cammi's mom Judy out to Eat N Park and had brunch. They are such a lovely family and I enjoyed getting to spend some time with Judy. When we returned her home, I was able to peak in and say hello to Cammi. She needs her lungs, please keep her in your prayers! Tomorrow I see an Endocrinologist to hopefully get set up for an insulin pump. Sweet Pea is still missing, I am a wreck, I hope she comes home soon!

Last night Hannah called in tears, Sweet Pea got out of the house and they have not seen her since.  It was only 10 degrees last night.  As of today, she is still MIA.  We are all very concerned about her and Hannah is a wreck!  Please pray that Sweet Pea comes home soon. Thank you!  Nancy

Hello friends! I hope you have all had a wonderful weekend! I was able to get to Mass yesterday with my mom and did some good exercising here at the apartment. I have also started working on my 3rd book. I might be crazy, but I am also excited. I plan for it to be very similar to my first book, A Journey Toward Spiritual Peace. We have a busy week ahead. I have several appointments tomorrow and Tuesday and we will be taking my friend Cammi's mom, Judy, out to lunch between appointments. Hopefully tomorrow I will get a button for my feeding tube. That will be so much nicer than the tube I have hanging out now. I am really hoping that we can head home to Olean on Thursday after my 11:30 ENT appointment. I can't believe we may be home at this time next week. I just hope nothing changes to disappoint me. I haven't even discussed it with Hannah because I don't want to disappoint her. I'll keep you posted as the week goes on. All my love! Nancy

I wanted to take a quick moment to wish my nephew Michael a Happy 8 th Birthday (yesterday was the actual day). I didn't want to post until I had a picture to share. Isn't he a cutie! I love you Michael and hope you had a wonderful day! Aunt Nancy

Hello! I did receive word that I was not chosen for the medication group of the study. I was disappointed , but the good thing is, if I start to show signs of rejection or they feel at any time I could benefit from the medication, they will switch me to that group, which is unusual for a research study. As with everything in my life, I realize God has a plan and for some reason I am not meant to receive this medicine at this time. I have accepted that and trust in my Lord. We have discovered a great movie theater near by that only charges $.99 (Can you believe it?). So, we have taken advantage this week and went to see 4 Christmases (Very cute!) and Australia (long, but good, I am not sure why the critics didn't like it). Australia was almost 3 hours long and my skinny little bum is sore. I need to remember to bring my special bum pad next time. Today was mismatch day at Hannah's school, what a wonderful day for a 9 year old, she could wear anything she wanted, hooray!

President Barack Obama giving his Inaugural Speech! In spite of the cold, it was a beautiful day and I was there! Nancy asked me to post pictures and an accounting of my experience on Inauguration Day.  All I will say here is that I was overwhelmed by the numbers of people who braved the cold, the lack of food or drink, the long lines, and the hours of standing.  I was impressed with every one's tolerance and patience and their desire to be a part of what was, for me personally, a historic event I chose to attend.  The smiles, the chanting, the singing, the "we are one" message of unity and hope was apparent everywhere I went in the most "crushing" of circumstances.  I never heard a curse word, no one was pushing or shoving, no one seemed angry or upset by the long delays and challenges in getting from one place to another.  It was a very proud moment to see the civility that is so often lacking in our society today.  It was truly amazing to be a part of somethi...

Hello Friends! It is my pleasure to finally introduce you to Dr. Pilewski , the greatest doctor EVER! I had an appointment today and everything continues to look good. I may even be able to take a quick trip home next weekend for a visit and should be able to move home in mid to late February, hooray! My Pulmonary Function Tests continue to improve and have gone from 64% two weeks ago to 72% today. This continues to be unbelievable and miraculous, but Dr. Pilewski told me he knew I would do great. So, my parents gave me an A for my feedback from today. I find out tomorrow what group I am in in the research study. (Pray extra hard for the medicine group!) Next week will be very busy, I have appointments with an ENT , Endocrinologist, and Gastroenterologist ; and if I am in the medicine group I will have to go in daily to be administered the drug. Dad got back safely today. I have asked him to post some of his pictures and an overview of his trip, so you can look forward to that soon. P...

I have to confess, one of the hardest parts of all that I have been through has been knowing my little girl was struggling. She never vocalized this and probably didn't even realize it, but before I left in December, she had become a different child. She was very clingy, weepy, dependant, on edge, and was experiencing fear and stomach aches at bedtime. How do you assure a child that everything will be okay when you don't know if that is the case? This past weekend my prayers were answered when I saw my little girl. She was happy, self-confident, fearless, and did not shed one tear until it was time to leave. The weight of the world has come off all of our shoulders, but I noticed it most in Hannah. A child her age shouldn't have to go through so much pain, stress, and suffering, but I am so thankful that the time has come when we can get back to our life, one full of health, happiness, and family activity. Thank you for all of the special prayers you said for my darling da...

Individual Donations: 35 Chronic Illness 150 Journey St. Mary's, Stephen Ministries: 10 Chronic Illness 10 Journey Family House: 4 Chronic Illness 10 Journey WCHOB CF Center: 10 Chronic Illness UPMC Lung Center: 4 Chronic Illness Catt. Co. Home Health: 3 Chronic Illness Our Lady of the Mountains Catholic Church: 1 Chronic Illness Dr. Witte, Olean Medical Group: 5 Chronic Illness Dr. Nick Koutrelakos, Oncology: 20 Chronic Illness Hillside Wesleyan: 2 Chronic Illness Buffalo AIDs Clinic: (by Jeanne S.) 12 Chronic Illness CF Clinic at Stanford Hosp.: (by Rosie P.) 4 Chronic Illness 4 Journey CF Center at Stanford: (by Cammi B.) 10 Chronic Illness Dr.s office in NC: (by Melissa) 1 Chronic Illness 1 Journey Southern Tier Child Advoc. Cntr.: 69 Chronic Illness (by First Presbyterian Church, Portville) UPMC Post-tranplant Dept.: 10 Chronic Illness 15 Journey Southpointe Towers: 5 Chronic Illness 10 Journey UPMC Research Studies: 3 Chronic Illness Olean General Hospital: 10 Chronic Illness...

Hello dear friends, I want you all to know that I had a wonderful weekend! Being with Scott and Hannah and being able to keep up with them was better than words can express. The joy and thankfulness I feel for my new lungs is immeasurable ! However, today I hurt inside. It is amazing how emotional pain can be worse than physical pain. Seeing them drive away this morning tore me up. I know we are counting down the weeks until I am able to go home, but it will be three weeks until I see them again and today that just seems unbearable. So, today I will have my sad day, but tomorrow I will wake up with a fresh start and a fresh attitude and I will move on. My love to you all! Nancy

Yesterday we spent the day at Station Square, a quaint little shopping area here in Pittsburgh. My family was so impressed with how well I did, we walked a lot and I did it all! I was sore last night and needed to take some extra pain medication, but it felt like we were a "normal" family again. Oh thank you God and my donor for giving me this amazing new lease on life. I have forgotten how wonderful it feels! Hannah & Me at lunch We rode an incline to the top of Mt. Washington to overlook the city. It was freezing cold, but the view is AMAZING from up here! Hannah & I rode the train at Station Square, she picked the caboose. We warmed up at Starbucks with hot coca and Chai. Hannah caught Daddy kissing me (what JOY!). Today we are off to see Bedtime Stories and then Scott and I are going out to dinner just the two of us. I am so enjoying every minute of this! All my love! Nancy

Hello friends! Today I have had two major milestones. First, I got to my appointment at the hospital without using a wheelchair (I walked the whole way, hooray!). Second, we had to take my dad to the airport to get a rental car (more about that in a moment) and on the way home Mom and I stopped at IKEA to do my walking for the day. I walked the entire IKEA store, BOTH floors! Please pinch me, this doesn't even seem possible. What a wonderful feeling! The initial study appointment went well. The study I am participating in involves the inhalation of an anti-rejection drug that is currently only approved for oral ingestion. If I am chosen for the test group, I will inhale Cyclosporine 3 times a week for 2 to 3 years. This is a phase three study, meaning it is a follow-up to other studies and the last step before FDA approval. I do not know if I am in the medicine or the standard care (no medicine, just monitoring) group. Early studies have shown significant reduction of rejection...

I know you have all been on pins and needles today wondering which stuffed animal Hannah would choose. And the winner is.... The Monkey!!!!!! Now, this decision was not based on my suggestion, but on Sweet Pea who seems to like the monkey more, oh well, I guess a kitten's opinion is more important than a Mom's. Hannah also had to share her new bunny slippers that she got for $2 at Old Navy, she is a bargain hunter just like her mom, I've trained her well (future husband beware!). We have had a quiet day here at the apartment. I walked my laps and did some Yoga, so I'm feeling sore. Tomorrow morning I start the study I told you about. I have to be at the hospital at 8:15 to sign the releases, have blood drawn, and do pulmonary function tests. Now, hopefully, I will be placed in the group that gets the inhaled medication. I hope you have a great night! Nancy

Good morning! Oh to have the dilemmas of childhood. Last night I received an urgent phone call from Hannah. Scott just returned from a business trip in Chicago and had brought home two stuffed animals, one for Lydia (our niece) and one for Hannah. Leave it to a guy to get two different stuffed animals and then give the child the opportunity to choose only ONE for herself. Hannah had to choose between a kitty and a monkey and didn't know what to do. She wanted me to help her and wanted to send me a picture right then so I could see the two stuffed animals. I was already in bed with my feeding tube connected, but I could tell this was very important to her, so I called my mom to ask if she could please bring my computer so I could see these two choices. How do you choose between two adorable stuffed animals? (I could feel Hannah's anxiety.) The rational adult in me suggested she choose the monkey because she already has several cats, but, of course, she was leaning toward the kit...

I have decided that the hardest thing post-transplant is conquering the fear. I have been sick and dependant for so long that now I am very unsure of myself and what I am able to do. I already shared how uncomfortable I was giving up my oxygen, but as of yesterday afternoon it is gone and I am FINE. A couple of days ago my mom brought up walking the mall to give me a break from the halls here at the apartment. I burst into tears, fearing I couldn't do that. Guess what, I did and I was FINE. Today we had to return some pants we bought for my dad to Sears. We headed back to the men's department and one minute mom was beside me, the next she was gone. I called out for her, but she didn't hear me. Then I started feeling like a small child who has lost her mom at the store. Two Sears employees walked by and asked if they could help me find something, I said "Yes, my mom." They must have thought I was nuts, but they did help me find her. (She was actually close ...

I believe a person's choice of shoes can say a lot about him/her. I have made two recent purchases (thanks to Sally S. who sent me a Christmas gift with the instructions to pamper myself) that I think reflect two sides of me post-transplant. The first purchase is a pair of fuchsia, fleece lined clogs. Why does this reflect a side of me? Well, two years ago, I wouldn't have been caught dead in these shoes (too ugly, too fuchsia, too attention getting in a negative way), but the last two years have changed me. During one of my hospitalizations, a nurse recommended I get a pair of Crocs for in the hospital because they are comfy, easy to get on and off, and can be cleaned and disinfected easily. I took her advice and ordered some Trellos from Land's End. They became my favorite shoes! They are very comfortable and that is really all that matters. In the last two years I have really had to put aside my vanity and just get practical and comfy. So this latest purchase reflects my...

I am so excited to tell you that I walked the mall today from one end to the other and back. I did great, I wasn't out of breath, and the only thing that bothered me was my feet, they feel bruised on the top of them. Of course, when you're mall walking, it is very tempting to do some mall shopping and to celebrate this momentous event, I made a special purchase for Scott (although it is really for me, but I have an easier time purchasing something if I think it is for someone else). I have been wanting this W illowtree for quite some time. Every time I see it I think of the beautiful relationship Scott and I share. I also picked up a couple of things at Aeropostale for Hannah to surprise her with this weekend. I could shop for her all day! My mental health is better today, thank you for all the kind words and prayers! Love you all! Nancy

Hello friends! Today had been a quiet, tired, down day. I miss Scott and Hannah, (but they will be here this Saturday) I feel exhausted and just want to sleep. All of this is normal, and until my medications get straightened out, I will have good and bad days. I keep telling myself that I need to take baby steps. It has only been a month and I can't expect to feel terrific yet, but it does feel good to look like a human again. I called my oxygen company to let them know I no longer need oxygen. This was very difficult, I still feel very attached to my oxygen, it is a security thing. I know I no longer need it and it is too expensive to hold on to when I am not using it, but I know it will be a bitter/sweet moment when they take it away tomorrow. (baby steps!) My port was pulled by the home health nurse today and starting next Monday I will go to a nearby lab for my weekly blood draws, no more need for home health to come and do it. That is a major milestone. I received a ter...

Happy Sunday! I was able to go to church with my mom today, Hooray! I haven't been able to go to church in such a long time that it felt just wonderful. I was fighting sleep the whole time and had to leave to use the restroom twice, but it felt great to be worshiping with other believers again. God is so good and deserves so much praise and thanks! I didn't tell you that I did get to the movie the other day. Marley and Me was really cute, but sad at the end. I would definitely recommend it, however. I only had to use the restroom 4 times while we were at the theater, I really got my exercise that day. Today I am down to 116 lbs., though my feet are still swollen, I think the weight loss can stop now. It is hard to believe I could have had 25 lbs. of fluid in my body, no wonder I have felt so miserable! I hope you have a wonderful rest of the weekend! My love to you all, Nancy

Hello friends! Yesterday was a long day, indeed. We got to UPMC around 11:30 for bloodwork and X-rays. I then had a Pulmonary Function test at 1:15. It was amazing for me to do that test without a struggle. My last PFT results were at 24% predicted, yesterday I was up to 68% predicted and according to Dr. Pilewski , my scores will continue to go up over the next several months, hooray! At my appointment with Dr. Pilewski I was able to meet my post-transplant coordinator, Leslie, who seems wonderful. The two of them answered all of my questions and put my mind at ease about a lot of things. Though my feet are still quite swollen, I am down to 121.5 lbs today, so the rest of my body is shedding the excess fluid, including my lungs which looked better this week than last. I also finally get to stop the IV antibiotics, that frees up 7 hours of my day, thank goodness! The only major concern is my Magnesium level which is extremely low. We considered going to the ER to have it administe...

Good night! I am too tired to post much, I had a full day of doctor's appointments. Just wanted you to know the reports were good. I will share the details tomorrow after hopefully a good night sleep (IV FREE!!!!). Love you! Nancy

Good morning ! Well, this morning I am down to 130 lbs., so obviously the extra Lasix is working. My hands are shaking something awful this morning, so I apologize if I make some typing errors. My friend John encouraged me to set up a Facebook account because several of our high school classmates are there. At first I thought, how can I manage another website? But then one of my cousins invited me to be his friend and the only way I could was to set up my own account. I figured that must be a sign, so I did. Wow, the number of friends I have re-connected with is unbelievable! It has been so fun to go to high school friends' websites and see the pictures of them and their beautiful families! It has really made the last two days a lot of fun! We also made a very exciting decision yesterday. I booked a room in Ocean City for Hannah, Scott, and me in July. Ocean City, MD is our favorite vacation place and I have not been well enough to go there since 2006. It was so exciting to make ...

Good Morning! I wanted to share this picture of Hannah taken last night. Scott got her on the slopes for her first ski adventure of the winter. She took a lesson and then the two of them skied/boarded together. Scott reported that she has improved a lot! Wish I could have been there. I woke up with horrible back pain around 5:00 this morning and fitfully rested after that. I can't wait for the pain to subside. I spoke with my coordinator last night and they added more Lasix, hopefully that will help the swelling. I can't remember if I had shared, but I went into surgery weighing around 115 and now weigh 137. As my coordinator put it, I am JUICY! I am not feeling very well today, so I don't think we will be having any outings. That is okay, I am finally able to read for small stretches, so perhaps I can finish some of the books I have started. I want to thank you for your many e-mails. I hope you all understand that I use this blog as my way to respond and keep you updated, ...

Well, you can all be proud of me, in the last three days I have had three outings. I already told you about the light show (beautiful!). Yesterday I went to Sears to return a pair of slippers I had ordered from Land's End and ended up buying these cute slippers instead. (Any question of my love of cats should officially be put to rest!) Unfortunately, I still need the wheelchair, but once the swelling in my legs goes down I should be able to walk the mall on my own, that will be amazing! Today I got my hair cut, hooray! I donned my medical mask and hit the local Cost Cutters. To make things even better, Tuesday is their sale price hair cut day, so I got a great bargain. (Thank you to my mom for treating me to a new do!) Here are some before and after shots. The front view doesn't look much different, but the back made a terrific recovery! That hair wash was heavenly! We ended our outing with a trip to Sheetz to make our own milkshakes, yum! Hope you are having a great day as...

For those of you who know me well, you know I am a collector of angels. Willowtree are my downfall and I have collected quite a few of those. For Christmas I received several new angels that I simply adore (along with two wonderful new nativity scenes, one shown above and one in a shakeup ball). This morning I was thinking of those angels and realized that I am surrounded by real life angels every day, we all are. There are so many kind, loving, generous, and compassionate people out there. As I read the entries to my guestbook, I am amazed by the people who have signed. Some are current friends, some I haven't seen for years, and others I have never even met. You are all angels to me. Your prayers for my miracle of new lungs were heard and, PRAISE GOD!, answered. I couldn't have done this without all of you and I know you will continue to be by my side as I re-gain my strength and overall health. I have a whole collection of human angels who love me, pray for me, and ...

Last night we went for my first adventure post-transplant. We have been seeing ads for a Christmas Light Show and since last night was the final evening, we decided to check it out. We piled in the car and headed out for a 45 minute drive. We stopped to eat dinner in the parking lot of a Burger King (yum, yum : ( ). I am still not up to going out to a restaurant, nor should I be out in a crowded public location, so that had to do. I didn't know what to expect, but it was absolutely amazing and beautiful! These pictures can only give you a small idea, I had to take them through the window and it was raining. Though I fought to stay awake and did fall asleep on the way home, it was so worth it! I wish Hannah could have been with us, she would have loved it! The Home Health nurse will be here at 8:30 to take my blood, so I need to go for now. I know many of you are back at school and work today. I hope you can start this new year with a fresh start and a new found sense of energy! ...

Well, I woke up this morning freezing cold, sweat-soaked through my PJs and sheets. It has taken me two hours to start to recover. It takes my body a while to adjust to new medications and some days it really struggles. One plus is, the facial swelling is usually gone by early afternoon having been sitting up all morning. Post-transplant poses a whole new set of challenges and responsibilities. The nurse coordinator who removed my staples and stitches on Tuesday told me the major reason people have rejection and problems maintaining their new organs is lack of compliance. I can see how that could be a problem for some people. Let me share my current daily schedule with you so you can get a sense of how responsible a transplant patient must be. A.M. 7:00 Take Oxycodone , check weight, check temperature. 8:00 Take Oxyconton , check blood pressure, check blood sugar. 8:30 Eat breakfast and take insulin. 9:00 Take morning medications (30 pills) 9:00 Run IV Zosyn 9:30 Do breat...

Once again my friends at Portville Central School have sent a special surprise for me. Hannah brought me this huge poster signed by students and teachers. We hung it up in my bedroom to remind me how much my community loves me. Thank you all so much! Hannah and Scott are getting ready to head home this morning. I am feeling sad, but will look forward to their next visit hopefully in two weeks. Please pray for their safe travels. I hope you all have a wonderful weekend! Love, Nancy

Well, I woke up this morning with a face like a balloon. Yesterday my entire legs and lower abdomen were swollen. I called my post-transplant coordinator and she told me to start the Lasix again and to decrease my Prograf (the main anti-rejection drug). My family has been laughing at me all morning, not very nice, huh? Scott arrived yesterday and I have been really enjoying having him here again! That is the only update this morning. I hope you have a wonderful Friday! Love you! Nancy

Happy New Year, friends! I hope you all had a safe and happy evening. Only Dad made it to 12:00, the rest of us were in bed long before. Rose and Haley made it home safely. We really enjoyed their visit and were sad to see them go. Thank you for coming to visit us! Yesterday Hannah and Granddaddy had a wonderful time at the Science Center with Reilly, Carter, Lance, and Dennis. Here are some pictures of their fun experiences. Scott is on his way to Pittsburgh. My mother-in-law and my niece and nephew are sick, so my in laws will not be able to visit this weekend, Scott is coming instead. My love and wishes for a wonderful and blessed New Year to all of you! Nancy