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


Friday, February 27, 2009

My parents left this morning

I don't think I need to say more. I will be okay, but it sure does hurt after almost a year of non-stop companionship. This is a true sign that my new life has begun, and that is a good thing.

My love to you all! Nancy

Wednesday, February 25, 2009

Home Sweet Home

We made it home last night around 8:30, I was very tired, but so glad to finally be home for good. I can unpack and not live out of a suitcase!

Look at the wonderful welcome I got thanks to Hannah and our friends the Ruffners.

Lots of unpacking to do. Thank God for moms! My parents will be leaving to go back to Wyoming on Friday, what will I do?

Thanks for your prayers for safe travel! Love, Nancy

Monday, February 23, 2009

I'm on my way, Home Sweet Home!

Hello friends!

This will be my last post from Pittsburgh, the next time I write it will be from Westons Mills, NY, hooray!  The apartment is a wreck, we are getting very excited, and I have less than 24 hours to learn all I can about my new pump (it arrived today!) before my last class tomorrow morning.

I know you will pray for our safe travels.  I can't wait to be home!

Love you!  Nancy

Sunday, February 22, 2009

And the Oscar goes to...

My dear mother looks forward to the Oscars as others look forward to the Superbowl, so we have been planning our Oscar party all week.  We have the newspaper clipping with all the nominees, the snacks and ice cream ready, and wardrobe choices made to fit right in on the red carpet.

We took a trip to the mall today to walk, but as usual, we found some bargains we just couldn't pass up.  Very fitting for our Oscar celebration.  What do you think of our purchases, will we be red carpet worthy?

I actually never intended to purchase a dress today, but it was 50% off and I needed a new dress for a wedding we will be attending this summer.  Truth be told, I fell in love with it!  I hope you like it too.

GOOD DAY, hooray!  Love, Nancy

Saturday, February 21, 2009

Lost a Day

Sorry I missed a day writing.  Yesterday I spent the day either crying or sleeping.  I haven't shared with you one of my on-going challenges, but it had a lot to do with the crying.  

As of September, I became eligible for Medicare.  I thought this would be a good thing, but it has been a true nightmare!  It got to the point that I had to ask two different Congressmen to help me get Part B processed so I wouldn't totally lose my health insurance.  Finally, with the help of Randy Kuhl, I did get Part B, but Medicare just doesn't offer the same quality of insurance I have been receiving through private insurance and because Scott's company employs fewer than 20 people, I have no choice but to take Medicare.

To make a very long story short, I needed to have my mediport needle changed yesterday for my IV antibiotics.  In the past a home health nurse has always come and done this for me, but I was informed on Wednesday that because I am not literally home-bound Medicare won't cover this.  What I was going to have to do instead was go UPMC, register at the hospital, be admitted, have this procedure performed (it takes maybe 5 minutes max) and then be discharged.  CRAZY!  I started to make some calls myself and was told by the insurance that they would cover home health, but when I spoke again with one of the UPMC coordinators she got upset with me, telling me it was 4:00 and she was all alone and how was she supposed to arrange all of this.  I apologized, hung up, and burst into tears.

We have to be so careful how we respond to other people.  I know she was having a bad day and was stressed out, but she decided to take that stress out on me and ruined both our afternoons.  I know I have done that to others myself in the past, but it is totally uncalled for.  The next time you are stressed, think before you respond in a negative or hurtful way to an innocent other.

When I finally spoke with my coordinator, Leslie, on Friday she was not upset with me and we decided I would wait until Tuesday when Jeff, my brother-in-law, can change my needle.

So, after all that, I am feeling better today.  My parents took me out to The Olive Garden for lunch and Mom and I even got dessert.  We have started packing up and are planning to move on Tuesday, Hooray.

Sorry I went on and on, the last few months have been so stressful with this medical insurance issue, but I know it will all work out.

My love to you all!  Nancy

Thursday, February 19, 2009

Quiet Day

Well, today I feel like I was hit by a bus.  My stomach is a mess from all the blood I swallowed, my head feels like it has been through a war, and I'm just plain tired.  So I sit here in my robe doing nothing, as instructed by my doctors.

May you have had a much more pleasant and eventful (in a good way) day than mine.  Believe me, though, I am not complaining, this is so much better than after the transplant that I could jump for joy!

All my love!  Nancy

Wednesday, February 18, 2009

Home at the Apartment

Taken yesterday when I first got to my room.

Hello friends!  I am starting a new fashion craze, gauze under de nose, isn't it attractive?

I was released from the hospital around 1:00 and am home relaxing.  The doctor said I shouldn't be doing ANYTHING for 36 hours, so I am following those instructions to the best of my ability.

I am sore and feel pretty crummy, but all went well, thank you God!  Hopefully this is the last hurdle before we go home.

Thank you for your prayers for a successful surgery, your prayers are VERY powerful!

All my love!  Nancy

The new button

a couple of weeks ago and had promised some pictures.
This is where the feeds go at night, I attach tubing and the feeding cans run through it.

The old button (my elephant trunk).

I never got a chance to share these pics because my computer bit the dust.

Tuesday, February 17, 2009


The surgeon just came in to tell us that she was able to completely clean out all of Nancy's sinuses and that everything went well.  She is in recovery and will later be moved to the transplant floor over in Presby Hospital where she was on the 9th floor post transplant.  She will spend the night there and will be released tomorrow.  Her post op appointment will be on Tuesday of next week.  The surgeon will turn her care back over to Dr. Pilewski (sp?) for post op care decisions.  

Nancy will likely not be too chatty this evening, so just consider that no news is good news until she is able to post again!  

My guess is we are still on track for taking her home to Portville sometime late next week!  Thanks for all the support and prayers for her, you've all been a lifeline for her through these past two months and I know how much it has meant to all of us, but to her most of all!

Nancy's Dad

Sunday, February 15, 2009

Back to PA


We are back at the apartment in Pittsburgh after a few terrific days at home.  I had such a wonderful visit and felt better this time around.  We are wondering if part of my difficulty last time was my sinus infection.  I wasn't nearly as tired this time around and didn't let myself worry about visiting people; I can do that when I am home for good in a couple of weeks.

I can't begin to describe to you the amazement I feel each day.  Two months ago I wasn't sure I was going to survive and now I am planning for the summer.  This visit at home I was able to help make a special Valentine brunch for my family and to help fix dinner last night.  It is so incredible to be able to participate in life again.  I have been blessed and am greatly appreciative of this second chance I have been given!

This will be a busy and uncomfortable week.  Tomorrow I have to have bloodwork and a sinus CT.  I am the first surgery on Tuesday morning, so we will need to be at the hospital around 6:00 a.m.  They will keep me at least one night depending on how I do, so let's hope I do well, you know how much I "love" the hospital.

One last piece of good news.  Though my computer is ruined, Scott was able to recover all of my documents, pictures, and programs, so once I am able to replace it I can restore all of my old settings, hooray!

I hope you all had a wonderful weekend!  Someone will post after my surgery to let you know how it went.  My love to you all!  Nancy

Friday, February 13, 2009

Wonderful Evening

Scott & I had the most wonderful date last night. We went to The Bistro and had a delicious and romantic meal! I wore my new outfit that I have been dying to wear (minus the heals, it was very icy last night). Though I froze, it felt wonderful to be dressed up and feel beautiful again.

Since I spent alone time with Daddy last night, today is Hannah's day. She only had a half day of school, so she and I have been hanging out. We just finished a rousing game of High School Musical 2. This has been such a comfortable and wonderful visit so far!

I hope you all have a Happy Valentine's Day! XOXO Nancy

Thursday, February 12, 2009

Good to be Home!

We made it home safely on Tuesday afternoon and everything is going great here. I am trying to take it easier this time around so I don't get so worn out. Scott and I are going out for a romantic Valentine dinner tonight. I can't wait to get dressed up! I'll be sure to post pictures.

I hope you are all having a great week! Love, Nancy

Monday, February 9, 2009

My Bronch. showed NO REJECTION!!!

The best news I received today was that things on my bronch. looked good and there is no rejection!  The lab results aren't back yet, but at least the most important info. came back positive.

I am also the proud new owner of a button that is much smaller and nicer than my previous PEG tube.  I will send a picture eventually, but it is looking a little scary right now, so I will wait until it heals up.  It was painful, but you all know how tough I am, so I got through it with flying colors.

Well, the Geek Squad could not do anything for my computer, they said it was ruined.  Now I just have to hope all of the info. on the hard drive can eventually be transferred to a new computer.  I still feel sick about it, but it is done and there is nothing I can do about it, so I just need to start saving up for a new one.

You won't hear from me tomorrow, it will be a busy day with appointments and then the trip home, but I'll try to post some updates from home.

Please take care and enjoy your week!  Nancy
I thought perhaps taking a picture of me with my new purse would help me feel better about this whole computer nightmare, unfortunately, it did not, but at least you can get a sense of the size of my new bag (I think I could almost squeeze into it if I really tried).  Today it will get its first test run to the doctor's office, I hope it does well.

My dad is taking my computer to the Geek Squad at Best Buy this morning.  Now even my cursor won't work.  I am trying to just roll with this, but it isn't helping my anxiety.

On a positive note, yesterday my mom and I walked around this big building twice, outside!!!, and it was wonderful.  This morning we walked over to the lab to get my blood drawn.  It is so amazing, still, to be able to walk places again.  It makes me feel so proud and accomplished!

This afternoon I get my feeding tube replaced with a button.  I know it is not going to be very pleasant, but I hope it will be worth it to not have the long tube coming out of my stomach.  If possible, I will take a before and after picture so you can see the improvement.

Well, I need to start packing for our trip home.  I hope you all have a wonderful Monday!

All my love,  Nancy

I also wanted to wish my friends Rose and Greg a VERY happy Birthday!  I hope you two spoil each other today.  I love you both very much!

Sunday, February 8, 2009

Good Sunday Morning


It looks like it will be a beautiful day here today. It has been SO cold, so a few days in the 50's seems like HEAVEN! I am hoping to get out to church with Mom this morning, but it will depend on how long my IV runs. I certainly didn't miss getting up in the middle of the night to take an IV, oh well!

Yesterday we took a trip to Target. This was only my second time in a Target, but my friend Cammi loves it, so I thought I should check it out. Please correct me if I am wrong, but it seemed kind of like Walmart, is that the case or am I missing something? I did purchase a great new purse with lots of compartments to organize all of the things I have to carry around with me every day.  I thought I had to carry a lot when Hannah was a baby, now I have just graduated to an adult "diaper bag".

A horrible thing happened while I was writing this post, I threw up on my laptop (sorry to be gross!)  My lungs have been irritated since the bronch and out of the blue I coughed and brought up breakfast.  I am just sick because it appears as though my keyboard is ruined, it isn't typing correctly, I just want to cry.  I keep hoping that when it dries it will work again.  I can't imagine not having my computer, it is my life line.  Dad was kind enough to let me finish this post on his computer.

I have a lot saved on that computer including both of my books and the beginning of book 3, please pray I didn't ruin it!  Thank you!  Nancy

Friday, February 6, 2009

My bronch went well.

After a long day of sleep I can finally post that my bronch this morning went well. We won't know the results until next week, but it sounds like things looked good. They obviously gave me a good dose of medicine, because I slept most of the time we were at the hospital and I went right to bed when we got home and slept until my mom woke me up at 6:00p.m.

I have a tentative date for my sinus surgery, February 17. That gives us a full week of no appointments, so we may choose to go home for another visit after my insulin pump appointment this coming Tuesday. We'll see if any other appointments crop up between now and then.

I'm still pretty tired, so it will be early to bed tonight. I start back on IV antibiotics tomorrow to treat the sinus infection. It was fun to be IV free for a few weeks anyway!

I hope you all have a wonderful weekend! Love, Nancy

Thursday, February 5, 2009

Long Day...

Hello! We have just returned home from a long day at the hospital. We got there around 11:30 and didn't leave until after 3:30.

My appointment went well. Everything continues to look good and my pulmonary function tests are stable. I have been experiencing a lot of tiredness and anxiety. They assured me this was normal. My coordinator reminded us that even though I look great, it will be at least a year before I will be totally back on my feet. Everyone just needs to be patient and not push too hard (me included!).

I am going to need to have sinus surgery, so we are hopeful that can be done next week. That will put off our move home a little, but as I've said, I want to get everything done before we come home. I will let you know when the surgery gets scheduled. I'll have to stay in the hospital for a day or two after the surgery.

That is all I have to report. I am really tired and need to lay down for a while. We need to be at the hospital tomorrow morning at 7:00 a.m. for my bronchoscope, please pray that goes well.

My love to you all! Nancy

Tuesday, February 3, 2009

A weekend Recap.

Hello friends!
I had a busy morning, but learned a lot at my insulin pump class. It was a three hour training and it was only me and another young woman, so we got a lot of individualized attention. I will go back for a one-on-one training next Tuesday. I am really excited about getting a pump and can even get a pink model (to match my cell phone and mp3 player).

Tomorrow we get a day off, then Thursday I see Dr. Pilewski and Friday I have my second Bronchoscope. I heard from the ENT and I do have sinusitis, but I may be able to get away with just antibiotics and not surgery, I'll get Dr. Pilewski's thoughts Thursday.

I promised you some more pictures from the weekend. We got so much fun family time, it was wonderful! Hannah taught me how to play several of the Wii games, we did a lot of snuggling, and I watched as Scott and Hannah sledded and made a wonderful snowman!

We snuggled a lot!

We played lots of games!

I directed the snowman making from the warmth of the kitchen.

I wasn't the only sleepy girl at the end of the weekend!

Monday, February 2, 2009

Back to Pittsburgh

We arrived back in Pittsburgh safely at around 2:30. It was awfully hard to leave, but at least I know this time, it won't be too much longer!

It was a great weekend, but it was also an eye-opener for me. I am doing well, but not as great as I thought. I was worn out at home and had to disappoint several people who had hoped to get a visit in over the weekend. Again, my family reminded me it hasn't even been two months yet, I need to be patient and give myself a break. I just hate to let anyone down. In a few weeks, though, I will be able to have plenty of time to catch up with friends and family.

I will share more pictures from the weekend when Scott e-mails them to me, but for now, here are some Sweet Pea reunion pictures. What an awesome thing to have happen while I was at home. Hannah and I had both been feeling quite heartbroken by the loss of our little kitty.

My love to you all! Nancy

The Miracle of Transplantation

Pause the music player before watching.