Back to Pittsburgh

Hello!

I continue to not feel very well. I am very tired and want to sleep a lot. I slept for 4 hours yesterday when we got home from Buffalo and slept until 10 this morning. Hopefully this will pass soon. It is stressful to feel like this. It brings back too many bad memories. I keep telling myself that this is part of life, I will get sick from time to time, but it will not last like before. I will certainly be relieved when I start to feel better.

We will be heading back to Pittsburgh on Wednesday and I will have the procedure to open my airway on Thursday morning. We are hoping this problem is what has been causing the cough I have been struggling with for several months. Please pray that is the case and it will be resolved after Thursday's procedure.

I hope you are all well.

P.S. If you haven't voted for my blog on Wellsphere yet, please do. I have dropped from 5th place to 12th place in the last week and would love to get back into the top 5, only you can make that happen! Thank you!

Nancy

Update from Dr. Pilewski

Hello!

I received an e-mail from my doctor today, and I promised I would share:


There was a 50% narrowing of one of the segments (branches) of the right lung. Dr. Johnson thought that you should have a balloon dilatation of this (basically another bronchoscopy with anesthesia to put you a bit more asleep). We can arrange this for when it's convenient. This is a common problem that usually resolves after the airway is opened towards normal.

The biopsy was negative for rejection. Cultures are negative so far. This is good!

We'll be in touch to find a date for you to return, sometime in the next month.


I feel better having heard from him, it doesn't sound like this will be any big deal to resolve.

I don't want to scare any of you who are planning to get the H1N1 vaccine, because I think it is very important, but I am feeling awful today. I don't normally have reactions to the flu vaccine, but I think that is what this is. I am exhausted and very nauseated, both possible side effects. Please pray that is all this is!

It is snowing right now, HUGE flakes, it is mesmerizing and relaxing, just what I need today when I'm feeling so punky.

My love to you all! Nancy

Sorry for the Delay

You all must be wondering if I dropped off the face of the earth or something. My body certainly feels like it! What a crazy several days!

Our trip to Pittsburgh went well. My Pulmonary Functions continue to stay at 92%. There was some concern after my bronch. about the main opening between my trach. and my lungs. That is where my new lungs were sown and the scar tissue seems to keep growing. At this point the opening has closed up 50% since transplant. Obviously, if that were to close too much, I would begin to have trouble with infection, breathing, etc. I am waiting to hear what the plan will be to deal with this, I will keep you updated.

We had two wonderful visits, Wednesday evening with our friends Scott & Christina and their 5 children, then Thursday evening with Cammi and her husband Lance. Cammi looks great and is getting better every day. She is struggling with many of the same issues I did post-transplant, so continue to keep her in your prayers.

We got home Friday afternoon and began preparations for Hannah's party. Saturday, we Trick or Treated and I dressed up and went from door to door with Hannah and her friend Taylor. I got some strange looks, but no one denied me candy. It was so much fun, quite a difference from being pushed around in my wheelchair in the cold last year.

Our Halloween/Birthday Activities: There were too many pictures to post, so I made a slideshow instead.

Hannah's party was a huge success. Scott created a haunted house in our basement and with the help of our friends Holly and Bryce, had the girls screaming all afternoon. I made a litter box cake per Hannah's request and let me tell you, it looked pretty disgusting, but tasted great (see my cooking blog for the recipe), and a witch's brew punch with a floating hand in it. Everyone seemed to have a really good time.

On Monday, Hannah brought Halloween sugar cookies to school and we invited Scott's family over to celebrate Hannah's Birthday with Chili (her request, one of the new recipes I tried a few weeks ago) and a pumpkin torte. When we fell into bed I could tell she was completely satisfied with her Birthday. Another year gone by, where did my baby go?

Yesterday we were able to all get the H1N1 vaccine, THANK YOU DR. WITTE's OFFICE!!!!!! So we should be as protected as we can be as we head into the winter months.

I am more tired than I have been since before my transplant. I will admit, I did WAY TOO MUCH!!!! It was just so thrilling to be able to give my daughter the best Birthday ever and it was SO WORTH the exhaustion I am feeling now.

Hope you all had a very happy Halloween and are preparing for Thanksgiving by treasuring and remembering all of the things you have to be thankful for!

All my love! Nancy

Pittsburgh Tomorrow

Hello friends!

Just a quick update. We will be heading to Pittsburgh tomorrow through Friday. I will see Dr Pilewski and have a bronchoscopy, so hopefully we will get continued good news.

I am really looking forward to the trip. We will be visiting our friends Scott & Christina and their children tomorrow night and then Thursday I will get to see Cammi!!!!

I need a break, even if it is to go to doctor's appointments. It seems like I have been crazy busy and we have Hannah's Birthday coming up. We are having 17 girls over on Sunday for a Halloween Birthday party. I am excited, yet stressed with preparations! Hannah will be 10 on Monday. I can't believe it!

I was exposed to the H1N1 virus last weekend, one of Hannah's friends came down with it while she was spending the night at our house, but my doctor's were quick to respond and I have been taking Tamiflu ever since. We have passed the 7 day incubation period and none of us have gotten sick, thank you God!!! I couldn't believe we were exposed so early. Hannah's friend is doing much better and returned to school yesterday.

I hope you all have a wonderful week. I will check in after our trip to Pittsburgh.

My love to you all! Nancy

I DID IT!!!

I am sure you have noticed my absence this week. I had been working on a presentation for my mother-in-law's church ladies group. It took up much of my time and I was so nervous about it. The presentation was last night. This was the first time I have spoken in front of a group in 3 years, so you can imagine my anxiety. I prayed that God would take over and just use me as a vessel to relay his message to these ladies.

Although I was quite nervous as I began, a peace came over me and the rest of the presentation just flowed. My speaking skills are rusty, but I think I got the message across. It was another accomplishment in my post-transplant experience and I know the next time I have to tell my story it will be that much easier.

Thank you to those of you who prayed for me, it worked. Thank you also to the ladies who attended the dinner for your hospitality and interest in what I had to share.

I slept until 10:45 this morning, so you know how much it took out of me, but it was a wonderful evening for me!

My love to you all! Nancy

Would you like to help a transplant patient in need?

For the next 60 days, the UPMC Heart, Lung, and Esophageal Surgery Institute offers you the chance to help. The Gene and Marlene Epstein Humanitarian Fund has issued a 1:1 matching challenge - up to $50,000 - in memory of Gene's brother, a cardiothoracic transplant recipient. The Epstein Challenge, when met, will provide transitional support for post-transplant patients who are struggling to cover the costs of their medications. Each dollar you donate will be matched 100%.

If you are willing, Please send a check made payable to CT Patient Assistance Fund to me at P.O. Box 5 Westons Mills, NY before December 15. I will send all of the checks in together to the Medical and Health Sciences Foundation at UPMC. What a wonderful Christmas gift to give to someone in need!

Thank you for considering this request!

We're Ready for Halloween, Are You?

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Haunted Castle Cake

As most of you know, I have gotten very interested in cooking lately and am having a blast trying all sorts of new recipes. Hannah's Birthday party is coming up next weekend and she had picked a cake out of a magazine that she wanted. We bought the magazine and I pondered over how on earth I was going to make this cake. The directions said it wasn't difficult to make, though the picture made it look impossible!

I decided I better do a dry run just to make sure I could do it, so this past Saturday, I spent the ENTIRE day in the kitchen. What I learned from this experience is: If it looks impossible, it probably is. Needless to say, we have decided to make a litter box cake instead. Disgusting, but much easier!

I thought I would share my attempt at the haunted castle cake. (This recipe will not be making it onto my cooking blog, I don't want anyone else to feel the frustration I felt on Saturday!)

Wonderful News Report

Hello! I wanted to share with you a recent news report about my friend Jamie. She had her transplant on December 10, 2007 (exactly one year before mine) and is the person who kept me motivated during the days right after my own transplant. Having seen Jamie and how well she was doing post-transplant kept my hope alive that I too would be healthy and happy in my new life. What a true miracle organ donation is!

http://www.localnews8.com/global/video/popup/pop_playerLaunch.asp?vt1=v&clipFormat=flv&clipId1=4233766&at1=News&h1=Double%20Lung%20Transplant%20Recipient%20Looks%20to%20Future&flvUri=&thirdpartymrssurl=

My love to you all! Nancy

Pumpkinville

Last year in Pumpkinville...


This year in Pumpkinville...

What a HUGE difference a year makes. We had a wonderful visit to Pumpkinville this past Sunday. It was much easier without a wheelchair and I enjoyed walking through the shops and exploring the corn maze with Scott and Hannah, though it was MUDDY! I can't sing God's praises loud enough for the new life he has given me!

My love to you all! Nancy