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
Saturday, January 31, 2009
I'll post pictures next week. All my love! Nancy
Friday, January 30, 2009
Wednesday, January 28, 2009
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
Tuesday, January 27, 2009
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 love, Nancy
Monday, January 26, 2009
Sunday, January 25, 2009
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
Friday, January 23, 2009
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!
In spite of the cold, it was a beautiful day and I was there!
Thursday, January 22, 2009
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.
Please take care! Nancy
Wednesday, January 21, 2009
Monday, January 19, 2009
St. Mary's, Stephen Ministries: 10 Chronic Illness
Family House: 4 Chronic Illness
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
CF Center at Stanford: (by Cammi B.) 10 Chronic Illness
Dr.s office in NC: (by Melissa) 1 Chronic Illness
Southern Tier Child Advoc. Cntr.: 69 Chronic Illness
(by First Presbyterian Church, Portville)
UPMC Post-tranplant Dept.: 10 Chronic Illness
Southpointe Towers: 5 Chronic Illness
UPMC Research Studies: 3 Chronic Illness
Olean General Hospital: 10 Chronic Illness
The Warming House SBU: 5 Journey
5 Chronic Illness
St. Elizabeth Motherhouse: 5 Journey 5 Chronic
St. John's Roman Catholic Church: 5 Journey 5 Chronic
The Landmark, Fall River, MA: 5 Journey 5 Chronic
Total Chronic Illness Donations: 238
Total Journey Donations: 230
Grand Total: 468
Thank you for helping to make this possible! I still have several organizations I plan to donate to, but I need to wait for December's proceeds to be deposited in my account.
If you donated books to a specific organization that I did not mention, please let me know and I will add your donation to the list. Thanks! Nancy
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
Sunday, January 18, 2009
It was freezing cold, but the view is AMAZING from up here!
We warmed up at Starbucks with hot coca and Chai.
Hannah caught Daddy kissing me (what JOY!).
Friday, January 16, 2009
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 in individuals who used inhaled Cyclosporine, so please pray I am chosen for the medicine group. I will find out which group I have been assigned to next Friday.
I am excited to report that I approved my latest book today, My Quest for New Lungs, which is an unedited transcript of my blog starting in April and ending December 31, 2008 and including all posts, pictures, and comments. As I mentioned before, I made the book for myself so I would have a record of my blog, but several of you have asked for copies, so I will put it online for you to purchase if you would like. The price I need to charge in order to break even is $20, the book is 824 pages! If you would be interested in ordering you can go to:
https://www.createspace.com/3369179 . It will also be available on Amazon in about 10 days.
I mentioned bringing my dad to get a rental car, well, let me tell you why. He is on his way to Baltimore to attend the inauguration events in Washington. Now, I have never mentioned politics on my blog, that isn't my focus, and I certainly don't want to offend anyone, but I must tell you how excited I am about the swearing in of Barack O'Bama. Having read both of his books and following him closely through the election, I think he is an amazing man who will do great things for our country. I am thrilled that my father has the opportunity to be there (whether he can see anything or not); what a historic and momentous day for our country!
Well, I have written enough. Hannah and Scott are on their way, so don't be concerned if you don't hear from me for a few days. I will share all about our visit when they leave on Monday.
God bless you all! Nancy
Thursday, January 15, 2009
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.
Scott also sent me a picture of my little Sweet Pea, so I thought I would share that as well. I miss my animals a lot! They have been wonderful companions while I have been home bound with my illness. Pets are GREAT!
Wednesday, January 14, 2009
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 by, I just couldn't see her.) As soon as I got to her I burst into tears, yet again. I was scared of being alone in the mall, a 34 year old mother was afraid to be without her mommy! She of course felt awful, but I assured her it was just me over-reacting.
Fear is a powerful force that needs to be confronted as soon as possible. I can see where some people post-transplant would become fearful to leave their homes. This is all a new adventure, but by taking baby steps, we can all overcome our fears.
May you never let fear control or limit the life you are leading! Nancy
Tuesday, January 13, 2009
Monday, January 12, 2009
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 terrific surprise in the mail today, a proof of my blog book: My Quest for New Lungs. Many of you had mentioned to my dad how great it would be to get a copy of my blog to keep for memory purposes. For me, it has been my journal and connection to the world. I have poured my love, hopes, dreams, challenges, fears, and faith into the blog. I wanted to have it in book form to keep forever and so, a few months ago, started working on a blog book, a transcript of my blog with comments. I recorded all of the blogs from April to December 2008. It is a HUGE book, 824 pages, but it was so fun to look through my proof copy today, it turned out great. I just have to fix the cover a little and then I will make it available to any of you who would like a copy. I do not plan to make any money off this new book, so I am selling it for my cost, $20 (it is more expensive because of the pictures and the number of pages). I will let you know when it is available for order.
Have a great evening! Nancy
Sunday, January 11, 2009
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.
Saturday, January 10, 2009
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 administered by IV, but decided to increase my oral dose over the weekend and see what the blood tests show on Monday. The lowered Magnesium is probably what is causing me to feel lousy and super tired all of the time.
The other things we are planning to do include: An appointment with an ENT to assess any vocal chord damage that may have happened during surgery; an appointment with Endocrinology to discuss an insulin pump; and an appointment with Gastroenterology to see if I can get a button for my feeding tube (I currently have a long tube that comes out of my belly and I HATE it!).
I have also enrolled in several research studies to try to help others in the future. I had to meet with two different researchers yesterday and one of them told me about a new study looking at the life extension of patients who use an inhaled anti-rejection medication called Cyclosporine. I am seriously considering signing up for this study even though it may require several visits to UPMC in the future.
That is all I can think to report right now. I am looking forward to a quiet day of rest! Nancy
Friday, January 9, 2009
Thursday, January 8, 2009
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 that reservation! What a fun thing to look forward to, a family vacation after three years. My next big reservation will be for a trip home to Jackson, but I am not sure when that will be.
We are hoping to go see Marley and Me today, but it will depend on how I am feeling. I'll let you know if we go.
One last thing, I am updating A Journey Toward Spiritual Peace with a crisper cover and an update about my transplant, so it will be unavailable for order for a couple of days.
I hope your week is going great! All my love and friendship! Nancy
Wednesday, January 7, 2009
Tuesday, January 6, 2009
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 support me; I am GREATLY BLESSED!
Please have a wonderful day! All my love, Nancy
Monday, January 5, 2009
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!
My love to you all! Nancy
Sunday, January 4, 2009
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.
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 breathing treatments (Xopenex & Colistin)
10:30 Run IV Meropenum
11:00 Take Oxycodone & Magnesium
12:00 Check blood sugar, eat lunch, take insulin
12:30 Take noon medications (11 pills)
3:00 Take Oxycodone & Magnesium
3:00 Run IV Zosyn
6:00 Check blood sugar, eat dinner, take insulin
6:30 take evening medications (9 pills)
6:30 Run IV Meropenum
7:00 Take Oxycodone & Magnesium
8:00 Take Oxyconton
8:30 Do breathing treatments (Xopenex & Colistin)
9:00 Run IV Zosyn
9:00 Take night time medications (20 pills)
9:30 Check blood sugar & take insulin
11:00 Take Oxycodone
2:30 Run IV Meropenum
3:00 Run IV Zosyn
3:00 Take Oxycodone
Are you feeling overwhelmed yet? I have also been trying to get out and walk each hour in the afternoon/evening. Because of the swelling in my feet and legs I can only tolerate one lap at a time, so I have been trying to do one lap several times a day. I also try to do sets of stairs frequently to build my leg muscles.
This will all be worth it, especially when the swelling subsides and the pain in my chest and back retreat. It certainly is a lot of work, however.
I hope you have a wonderful Sunday! Love, Nancy
Saturday, January 3, 2009
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.
Friday, January 2, 2009
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
Thursday, January 1, 2009
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.