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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Saturday, January 10, 2009

Long, but good, day.

Hello friends!

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

5 comments:

Blomquist Blog said...

Hi Nancy!

Great news about your doctor visit. It sounds like you are moving in the right direction. That is wonderful. Keep plugging away and making small strides and before you know it, you will be well on your way back home to Olean to start your "new" life with your family.

I am not at all surprised to hear that you might help with some studies and research. You have definitely have found your calling in helping others Nancy. This world is a much better place with you in it. I just count my blessings every day and you are on the top of my list. Thank you for being you and continuing to inspire so many!

I love you Nancy and I hope you have a very restful day and weekend!

With love and admiration,

Debbie

Anonymous said...

am such a believer in studies and research and applaud you for thinking of signing up for the study. the news is so wonderful and it will just get better. i always think of you as a friend and also a "patient" and how I would love to be one of your nurses.
Much luv from me, Harley-dog and the Goob!!!

Amy Deahr said...

Wow, that was a very busy day. Great to hear that things are going so well. 68%!!! WOW!!! You are also shedding that water fast! Fantastic news. Hopefully the Magnesium increased dose will help you feel even better!

You will have so much more time to rest wtihout those IVs (or maybe play on Facebook a little):) Have a super day! You are always in my thoughts and prayers!!

Lots of love and hugs,
Amy

Anonymous said...

Hi Nancy,

I was so happy to hear what great progress you are obviously making. And that was great news that you can stop your IV's! What will you DO with yourself all day?!

Looking forward to hearing about some higher magnesium levels next week!

Love, Claire

Cammi said...

68 percent?!?! After just one month?! You rock, Nancy! I hope the magnesium is resolved quickly. I hope you are feeling a little stronger every day!

The Miracle of Transplantation

Pause the music player before watching.