You've Been Given the Gift of Life, Give it Back!

Welcome friends and family!

Thank you for visiting my blog. It documents my amazing journey from pre to post double lung transplant. I am a 37 year old mother and wife with Cystic Fibrosis who has been more greatly blessed than I could ever imagine possible!

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.

If you are a first time visitor, please take a moment to watch The Miracle of Transplantation video below. To me, pictures speak a thousand words.

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.

Please feel free to contact me with questions or feedback, I would love to hear from you!

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


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Wednesday, April 29, 2009

Hannah finds a friend!


Hello! I thought you would like to meet Hannah's latest "pet". I say that loosely because it is not allowed in the house and is remaining in its own habitat in front of our house. She is a much braver girl than I was (and still am, though I did "pet" it).


I spoke with my Transplant Coordinator today and we are trying to schedule my Bronch. for Monday. That will work well because Scott will only have to miss one day of work that way. When I expressed concern about how anxious I have been feeling ALL of the time and for NO particular reason, she didn't seem the least bit surprised and said several of my meds cause anxiety. Unfortunately, the alternative is medication that causes hair growth, anxiety vs. a beard, I think I'll have to suck it up and take the anxiety.


My parents are on their way to Tahiti today for 4 days. They sure do deserve it after this last year. I hope they have a wonderful time and wish I could stow-away in their bags.


I have to get back to laundry. Have a great evening! Love, Nancy

Tuesday, April 28, 2009

Hannah bought a Slip & Slide over the weekend and she and her cousins have been really enjoying playing in the water. Thought you might enjoy seeing some of the action. We had temperatures in the 80's yesterday. It is supposed to cool down for the rest of the week.

video

Happy 38th Birthday to my Scotty today. Hannah and I are going to make a big deal about it tonight for sure!

I am doing a little better. The medication seems to be helping the depression and I am not sleeping as much, which is a relief. I am still struggling with a great deal of anxiety, but that should eventually pass, it is probably mostly from my elevated blood count numbers.

I am still waiting for my Bronch. to be re-scheduled. My white blood count was up high enough to do it, so I am just waiting for an appointment.

I hope you are having a wonderful beginning of the week! All my love, Nancy

Saturday, April 25, 2009

Thank you for being here!

I can't tell you how touched I am by all of the support I have received since my last post. Though your loving messages caused many a tear, it was because I know how loved I am and I am so grateful to have so many angels out there rooting for me. I do need you all right now, almost more than ever. I know you will continue to pray and I so appreciate that!

All my love! Nancy

Friday, April 24, 2009

I apologize

I have to apologize to all of you because I haven't been honest with myself or you, something I promised myself I would do with this blog.

I have recently acknowledged that I am severely depressed right now and have reached out for the appropriate help. By reaching out I have discovered that this is a common experience for people who have had a transplant. I was sick for so long with one thing keeping me going, the thought of a transplant. When the transplant occurred, I experienced a temporary high, but then I got dropped back into reality and instead of landing on solid ground, I dove down deep under water and I'm struggling to swim out.

My whole life has changed and I don't know how to handle it, what I'm meant to do now, or how I begin to move forward again. This is very scary producing a great deal of depression and anxiety.

These last few weeks I have tried to keep a positive spin on the blog, showing you the fun things we have been doing, but that has been a way to mask the hurt and sadness I have been feeling. I have felt extremely guilty about this, believing I should be happy and thrilled with my new life, but between the physical and emotional issues I am dealing with, that just isn't possible and it isn't my fault either.

All I can do is ask for your prayers and to please not be disappointed with me. Thank you! Nancy

Monday, April 20, 2009

Fishing

Yesterday morning my family headed out bright and early to fish. I don't have a pole or a license, so I just went to enjoy the beautiful morning. We had a great time, even though not one fish nibbled on their lines. It was just wonderful being out and enjoying the glory of God's wonderful morning. The only bad thing was it tired me out enough that I had to go back to bed instead of to church, which I hadn't intended. But I certainly had time to praise and give thanks while we were out enjoying nature.


Saturday night we were invited to a BBQ at our friends Joe and Kim's camp. I haven't been out to a friend's house for dinner in a very long time, so it was really special to just hang out with friends.

I hope your Monday was good and uneventful. With my love, Nancy



Saturday, April 18, 2009

An Update from UPMC

Hello friends!

I was finally able to get in touch with my transplant coordinator yesterday. Unfortunately, my white blood cell count is still too low to even consider a Bronch. So, I am back on shots of Nuepogen to try to get my bone marrow to start doing its job. I will give myself three shots then go in for blood-work on Wednesday. At the rate we're going, it will be a couple of weeks before I have my Bronch. re-scheduled.

My other blood results are improving, yet still need some work, so we made some medication changes to try to get them back on target.

It is beautiful here today. Scott and several of his friends have been riding motorcycles on his track and I have enjoyed just sitting and watching them. I hope you are enjoying your Saturday as well! Love to you all! Nancy

Friday, April 17, 2009

Ice cream!

We took our first trip to Hi Ho, the local seasonal ice cream parlor. That is a sure sign that nicer days are to come. Today is a beautiful day and Hannah and I have just been relaxing and enjoying each other.

If you get a chance, treat yourself to ice cream tonight, you deserve it! Love, Nancy

Thursday, April 16, 2009

Sunny Day!

Just wanted to show you where I will be spending my afternoon. It is absolutely beautiful here today. What do you think of our new back porch? We had an uncovered deck, but now that I have to be so careful about sun exposure, we decided to use our tax return to put on a covered porch. I have always dreamed of having one on our house and now it is a reality. All those medical expenses paid off and I will have a safe place to enjoy the outdoors this summer!
Wish you could join me on my new porch, but I'll be thinking about you! All my love! Nancy
P.S. I still have not received a report from Pittsburgh about when my Bronch will be rescheduled for. I called yesterday and the blood report had not come in yet. I will keep you posted.

Wednesday, April 15, 2009

Pampered

Today I treated Hannah to a salon day. We each got our hair trimmed, had a protein treatment, and got highlights. Her highlights are quite bold and I'm not sure how I feel about them yet, but she loves them.

Here I was worrying about how I was going to keep Hannah entertained, but we have had a wonderful break together and I will hate to see it end. She is growing up to be such a lovely young lady and she is so much fun to be around. We have had some special dates this break and I hope we can continue to have special dates (just the two of us).
I hope you are all having a great week! All my love! Nancy

Tuesday, April 14, 2009

Hello friends,

Today I have had a little more energy which is greatly appreciated. It seems like I have been in a funk for weeks now, so unmotivated and tired. It has been very discouraging and disheartening. I have been reflecting on what I thought post-transplant would be and it is so much different. I guess, like many of you, I thought once I recovered from surgery I would become healthy and "normal" again. Though I am breathing (hooray!) I am still struggling and that adds to the overall discouragement. Please don't think I am not grateful for all I have and the miracle I have received, I am just not being patient enough with my expectations of how I should be feeling.

I had told you I was working on my third book, but the last month or so, I just haven't had the umph to work on it. I think it is important for me to write, however, because no one warned me about what things would be like after the transplant. The fear, the anxiety, the tiredness, but also the mixture of extreme joy and thankfulness. I hope my new book can help other transplant patients to better prepare for life after transplant, but also to help people who have not had a transplant appreciate the lives they have been given.

Please pray for a renewal of my inspiration to write and also for energy, I desperately need some.

Thank you all for continuing on this journey with me. I can't wait for the day when all I have to report is wonderful news! All my love, Nancy

Monday, April 13, 2009

Hello! I hope you all had a blessed Easter! We had a wonderful day, starting with an Easter egg hunt, followed by Easter Mass, and a lovely dinner at my Mother-in-law's house. It was a great day for all of us!
Hannah with her Easter basket.
Jasper put on his Easter best.

My family!






We also had a lovely weekend. On Saturday we had some friends over for a cook-in. We haven't entertained in a long time, so it felt wonderful to welcome friends into our home.
One of Hannah's Easter gifts was a ticket for a movie date with Mom, so she and I just returned from the Hannah Montana movie. It was very cute and a nice way to spend an afternoon, on a date with my daughter.
I had my Monday blood draw this morning, so I am just waiting to hear when I will need to return to Pittsburgh to complete the Bronch. I dread having to turn around and go back.
Well, Happy Monday! Love, Nancy





Saturday, April 11, 2009

Easter Egg Coloring

We decorated our Easter eggs last night. Hannah picked out a really fun kit that you rub glittery paper on the eggs after they are colored. We had a lot of fun! Hannah is concerned that the Easter bunny will be hiding the eggs in very difficult places this year since she is getting older, we'll see how hard they are to find tomorrow.












I wanted to share something kind of neat that is happening with my finger nails. People with CF have clubbing and discoloration of the nails due to the lack of oxygen. As my nails are growing out post-transplant, they are a nice light pink color and are no longer clubbed. There is an obvious line where the new growth meets my old nails. They are going to be so pretty when they finally grow out, it is very exciting!
May you enjoy this beautiful Saturday before Easter! All my love! Nancy



Friday, April 10, 2009

Home from UPMC

Hello!

We are home earlier than expected today. My Bronch. had to be post-poned because my white blood cell count is extremely low and doing the procedure would have put me at risk for developing pneumonia. The doctor prescribed Nupogen which is an injection I give myself for 3 days that should help to regenerate the white cells. We'll see what the numbers look like on my Monday labs and then they will re-schedule me for a day next week, ugh, back to Pittsburgh.

Many of my levels are still off whack and I continue to be pretty anemic which is why I have felt so droopy and tired lately. I am on iron and an injected medication for that as well.

All of my other appointments went well. My ENT said my nose looked beautiful, my Endocrinologist complimented my quick learning of controlling my sugars with my pump, and I had gained 5 lbs which made my Gastroenterologist proud.

Now I am ready to gear up for Easter, I can't believe it is coming on Sunday!

May today be a day of quiet and reflection in preparation for the rising of our Lord. Nancy

Tuesday, April 7, 2009

A Big Accomplishment

Well, this may sound silly, but I took a big step today and went alone with Hannah to both Walmart and K-Mart. I have been terrified to go without Scott, but knew I needed to be able to go alone. We didn't need much, so it was a good first try and I feel better knowing I CAN do it.

We celebrated my niece Lydia and nephew Simon's Birthdays over the weekend and I wanted to share a couple of pictures with you. The kids had a ball, it is hard to believe they are 5 and almost 3!

We head to Pittsburgh tomorrow for several appointment and won't be home until Friday, so don't be concerned if you don't hear from me until over the weekend.

Enjoy this week of preparation for Easter. All my love! Nancy

Monday, April 6, 2009

Busy Weekend


Hello!

Well, we had a pretty busy weekend. Hannah was invited to a tea party at her friend Grace's house and we didn't have a dress. We headed to the mall to look for a tea party/Easter dress and found many adorable ones, but picked this black and white one.

We then decided to give Hannah an early Easter present, so we headed to Claire's to get her ears pierced. She was super nervous and excited all rolled into one. She did a great job and has repeatedly told us that it didn't hurt. She can't seem to stop touching her ears and admiring herself in mirrors.
To top the weekend off, I got to go to Palm Sunday Mass. This was my first trip to Mass since I returned home and it felt great to be there!


I am still dragging. I am not sure if it is my low red blood count or what, but I am hopeful I will get some assistance when we go to Pittsburgh on Wednesday.


I hope you had a wonderful weekend! Nancy

Friday, April 3, 2009

It's Friday!

Well, it is a rainy Friday, but that isn't stopping Hannah and her friend Kelsey from jumping on the trampoline, they are having a great time as I watch from the comfort of the living room.

I took a second trip to the Chiropractor this morning and should be good for awhile. The pain seems to have resolved and I am just sore now. I also got in the mail a medication that I have to give myself as a shot once a week that should help with my anemia. I am hopeful that if we can get the anemia under control I might get some umph back. It is tough to drag through the day.

Spring break has started. Some of you e-mailed me some great ideas to do with Hannah, thanks for your help!

I hope your having a great Friday and have some fun weekend plans to look forward to! My love to you all! Nancy

Thursday, April 2, 2009

I Need a Little Umph!

Hello!

I keep hoping I'm going to wake up one morning and just feel great, hop out of bead ready and raring to start the day. So far, no such luck, but I am not giving up on that dream.

I had a visitor today, my friend Ruth, which always brings me joy. My mother-in-law cleaned the bathrooms, so that made my day as well, nothing like a clean bathroom!

That is all to report. Hannah and I are on our own for dinner, so I have to come up with something good for us to eat, oh the pressure!

Hope you had a great day! Nancy

Wednesday, April 1, 2009

BIG FOOT

Okay, I am starting to feel like the Pillsbury Dough Girl, but please don't poke me in the stomach, I can guarantee I will not giggle!

I continue to feel better each day. I took a trip to see my Chiropractor today and am hoping he can work some of the kinks out of my back to give me more relief. I was always fearful of Chiropractors, but it is amazing how much they can help when you are in pain and the doctors are only providing heat and pain meds as a solution.

Hannah is counting down the days to Spring Break. They have off for two weeks starting Friday at 12:00. How I am going to keep her busy is beyond me, any helpful ideas would be appreciated. We return to UPMC next Wednesday for a brutal three days of appointments, so I am trying to get some good rest to build up for that adventure.

Please don't forget to send in your checks for Great Strides ASAP if you would like to participate. A special thank you to those of you who have sent in donations.

I hope your week is going great and please don't be afraid to introduce yourself if you see me out, it is so nice to put faces with all of the love and prayers I have been receiving! All my love! Nancy

The Miracle of Transplantation

Pause the music player before watching.