Something to Consider...

Dear friends and family,

Tonight I would like to encourage you to think about becoming an organ donor if you are not already one. Until I needed lungs, I have to be honest, this was not something I spent much if any time thinking about. I recently checked my Driver's License to see if I had designated myself as a possible donor and was shocked to realize I had not. I immediately added this to my Living Will and made sure my family knew my desire to donate any organs or tissues that could be used if something were to happen to me.

None of us likes to think about this, because it means we have to acknowledge our own mortality, but the fact is, we are all going to die eventually. Do you have the courage to allow your death to change the lives of others? What a beautiful gift organ donation is and I would ask you to at least consider adding it to your license.

If you don't have a current Living Will, Power of Attorney, or Health Care Proxy, I would also encourage you to set up one or more. That is a gift you will give your loved ones to let them know your wishes if you are unable to speak for yourself.

I so appreciate you at least taking a moment to think about this option, it is a purely personal decision that only you can make.

All my love! Nancy

Home from Pittsburgh

Hello!

I have a lot of updates to give you today. We returned from Pittsburgh last night. It was a good trip. We have decided that I was having a bad allergic reaction to the inhaled Fortaz antibiotic and that is what was causing me to feel so poorly last week. We have discontinued that for now and are holding on IV antibiotics to see if I will continue to feel better without breathing that in. Though my white cell count was elevated, I do not have pneumonia, thank you God!

There has still been no movement on the list. According to Dr. Pilewski, if I was 6 ft. tall I would be golden, but unfortunately, I need smaller lungs. At this point, we will not return until August, unless things change on the list.


Julie's surgery went well. She received three new organs: a stomach, pancreas, and small bowel. She was awake 5 hours after her surgery ended which is quite amazing. According to her mom she is doing well and I saw a picture of her taken yesterday.

Scott and I made our trip a celebration of our 12 year wedding anniversary which is tomorrow. We enjoyed our time alone, we haven't had much alone time in a while.

Finally, I wanted to share pictures of Hannah on her last day of school (with a brand new haircut, too!). She is now officially a 4th Grader, Oh my!



I am hoping I will have some pictures to share from the Music in the Park shortly. What a wonderful evening that was. I am not sure what the grand total raised that evening was, but it was a lot more than any of us expected. What a wonderful community we live in! More to follow on this later.

Love to you all! Nancy

Wonderful News!

I received word this morning that my friend Julie, from Family House, got her transplant call. It is a day for miracles! Please pray for Julie today as she undergoes this major surgery. Please also pray for Julie's mom, Mary. Bring her peace and hope while awaiting news of Julie's successful transplant. God hears our prayers and is merciful, thank you dear Lord!

The weather looks like it will be beautiful for Music in the Park this evening. I am not sure if I will feel up to attending, but Hannah and my mom will definitely be there.

Dr. Pilewski is planning to re-start the IV antibiotics, so I am awaiting a plan, whether it be to try to start them here today or tomorrow in Pittsburgh. Scott and I will leave tomorrow morning for Pittsburgh and hopefully return home on Friday, unless I need to be hospitalized.

Thank you all for your wonderful prayers! All my love! Nancy

Monday

Hello friends,

I hope you all had a wonderful weekend! I have to admit, I have been struggling. I feared that once my IV antibiotics got out of my system I might have a hard time and I guess I was correct.

I am trying to keep my chin up and follow my own advice, to just take things one day at a time. Scott and I travel to Pittsburgh on Thursday to see Dr. Pilewski, maybe there is something that can be done to help me feel a little better, I can't continue to be on IVs forever. Please pray that my body can stay strong and I can fight off infections on my own without the IV antibiotics.

Thank you all so much for your love and continued prayers! Nancy

Picnic in the Park

Today I got to have a picnic with Hannah and her friends at their 3rd grade field trip. Though I really wasn't feeling up to this outing, I am glad I went. I haven't been able to do anything with her class this year and I have missed that! Seeing the kids running around having so much fun was just wonderful. It is these little things we forget to appreciate!

I haven't been feeling very well the last few days. Yesterday, I went to Aldi with my mom (for those of you not familiar with Aldi, it is a little tiny grocery store) and decided to walk instead of use my wheelchair; I considered it my Pulmonary Rehab. for the day. It is amazing how much more difficult it is to walk around a little store than to walk on a treadmill. By the time we got back to the car I was totally exhausted and slept for three hours when we got home. Even after waking from my nap I didn't have the energy to get off the couch. Again, a huge reminder to appreciate all that you are able to do. It doesn't seem that long ago that I could work all day, grocery shop at 5:00, and then come home and make dinner. I know I didn't appreciate then the ability to do so much!

I received my list of Angel Flight pilots today, so that is one less thing to worry about. We should be ready when we finally get the long awaited transplant call.

Enjoy your weekend! Love, Nancy

Save the Date

Next Wednesday, June 25, at 6:30 Scott's acoustic band, "Cuzin Freddy's Glass Eye" will be playing at the Park in Portville. Tim Emley was kind enough to invite them to play and any donations that evening will be donated to my medical fund. I am hopeful to be able to attend, if nothing changes with the status of my transplant, so I hope I will see you there. Pray for sun and a little warmer temperatures!

I wanted to share a couple more pictures from the benefit with you. My dear friend, Ashleigh, sent them to me. I have to admit, I have been worn out this week, but it was SO worth it!

Love to you all! Nancy

The Benefit was a HUGE Success!

Thank you to my friends and family in the Olean, Westons Mills, and Portville Communities!

(Double click on the pictures if you would like to see a larger image.)

Saturday's benefit was a huge success! It was wonderful to see so many people coming out to support me and my family. I was thrilled to be able to attend for some of the time! Over $7000 was raised. God bless you all!!!!

Thank you so much to everyone who made donations, who bought my book, and who came to support us. If any of you have pictures you would like to e-mail me, I would love to post them. These are some of the pictures my dad took that day.




I want to say a very special thank you to Ruth and Amy for planning and putting together such an awesome event! I am so blessed to have such wonderful friends.

I would also like to thank:

Uncle Tom & Aunt Debbie Weatherell (Mickey's) for the wonderful Pork BBQ dinners!

Aunt Judy Bell for her help in coordinating donations and baskets.

Jon and Catie Farleo for coordinating the 50/50 Raffle.

Keith Miller for donating all of the beautiful flower baskets and flats.

Sysco (and especially Rob) for donating food for the event.

Rick, Angie, and Grace Emley for their terrific music (you guys rocked!)

Katie Duggan and the Olean Irish Dancers for their wonderful performance!

Josh, for driving all the way from Penn Yan to DJ.


Thank you, also, to all of the people who donated their time to help with selling raffle tickets, working the food table, and helping in the kitchen!


Sunday was a day of much needed rest! We celebrated Father's Day with Scott and my dad and enjoyed a special family dinner with my mother-in-law, Gail, and Leslie, Jeff, Lydia, and Simon Szymanski (Scott's sister and her family).

Happy belated Father's Day to all of you Dads! You are wonderful, special, and loved dearly!

All my love! Nancy

Benefit Tomorrow

Dear friends,

I am getting very excited about tomorrow's benefit. I never dreamed I would be home to be able to attend. For those of you who are hoping to see me at the benefit, I am hoping to be there from 12:00 to 2:00, then I will need to go home and rest, I hope to return around 5:00 so I will be able to see the Irish Dancers at 6:00. Of course, everything will depend on how I feel.

I want to say a special thanks to Ruth and Amy for organizing the event. I know so many of you have helped and I appreciate it so much! I hope I will get to thank you all in person at some point! I am greatly blessed to have so many "old" and "new" friends! Nancy

Tied Up Grama

When I awoke from my nap today, I found a CRAZY sight. My poor little mother was tied up in a chair, tape over her mouth and all. I guess at the mention of a much needed bath, Hannah mutinied; she must be starting to feel better. : )

See all the fun I was missing in Pittsburgh? I have started a new inhaled antibiotic to hopefully keep my lungs infection free without the IVs. The only negative to this new drug is that is smells and tastes like cat pee (or at least what I imagine cat pee would taste like). Lucky ME!

Hope you are having a great day today! Nancy

Hannah's Irish Dance Recital

Here are the pictures I promised. Unfortunately, Hannah got sick last night and is still not feeling well. We think she has strep, so she will be starting on antibiotics. I have been spraying a lot of Lysol and am sure glad to have Grandma and Granddaddy here to help out.

It has been so wonderful being at home. There truly is no place like home!

Love to you all! Nancy

We're Home

Hello! Sorry to keep you all hanging. We did come home yesterday and even made it in time to see Hannah perform in her end of the year Irish Dance recital (she did a great job and got an award for "Most Improved Dancer"). I will post some pictures of the recital soon.

I spent today resting, I am very tired, but it feels so good to be home, even if it is only temporarily.

I will keep you informed of any changes in my transplant status.

All my love! Nancy

Decision Made

After some prayer, careful thought, and discussion with my family, I have decided that we will stay in Pittsburgh until Monday, but if there is no change in my status, we will drive home Monday afternoon. I was able to speak with Angel Flight and they do feel they could accommodate me out of the Bradford, PA airport, so that helped my decision greatly.

My coordinator, Paul, will contact me as soon as the other person is transplanted and if, per chance, that happens this weekend, we will stay put. If not, I will at least get a little time at home with Scott and Hannah. who knows, maybe I will even be able to attend the benefit next weekend, wouldn't that be wonderful!

I will let you know if anything changes, but if not, I hope you all have a wonderful weekend.

All my love! Nancy

Tough Decision

Well, I have a difficult decision to make. According to Dr. Pilewski, there is still one person ahead of me on the transplant list who needs the same size and blood type lungs. This woman has been waiting for the last five weeks, just like me. Obviously, there is no way to know how much longer her lungs will take, but I won't be transplanted until after she is. I am trying to decide whether or not to go home for a little while. I hate to think of waiting several more weeks away from Hannah. Please pray for my guidance. I am looking into the option of Angel Flight, which provides free air transport for people who are in need of transplants, but I am not sure if there are any pilots in the Olean area. If that was an option, it would make my decision a lot easier, because I would be able to get to Pittsburgh from Olean when I receive the call.

I will be ending IV antibiotics tomorrow, as well, which is also a little nerve wracking. I am hopeful my body can continue to fight without them, because I can't continue to be on them indefinitely.

I am going to try to put this big decision in God's hands. Hopefully I will be able to get more information on Angel Flight tomorrow. I will keep you posted.

All my love! Nancy

Thursday, June 5

Hello!

Just a quick update. I have an appointment at 4:00 with Dr. Pilewski, so I will have more to share this evening. Yesterday was another good day at rehab., still no bleeding, but I was worn out when we got home.

We just got proofs of Hannah's Spring school pictures, I thought I would share.

I also wanted to say Happy 10th Birthday to my niece, Amber! I love you sweetie!

I hope you're having a great day! Nancy

Sleepy Day

Well, today has been a sleepy day for me. I am still trying to recover from the fun of the weekend. The good news is, I did not have any bleeding after rehab., thank you God!!! Back again tomorrow.

I have spoken of my new friend, Julie. I wanted to post her picture because she needs your prayers. She has been really struggling. Thursday she has an important test that will determine whether she will be able to have the transplant she so desperately needs. Please, add her to your prayer list if you haven't already. She needs good news on Thursday.

Thank you for your continued prayers and love! Nancy

The BEST Weekend!

I had the BEST weekend! It was so great to have Scott and Hannah here. My parents were kind enough to move over to another Family House so my little family could have time together. We went to IKEA, (and the magic was back!) did some shopping for Hannah and me, (we got matching t-shirts, at 8 it is still cool to wear the same shirt as your mom) and had two nice dinners out, one with my parents and one just the three of us. It was hard to see them leave this morning, but their visit gave me a much needed boost.

I went back to Pulmonary Rehab. today, so I am just praying I don't have any lung bleeding this afternoon or evening.

As always, thank you for your continued prayers and support, they mean so much to me!

All my love! Nancy