Monday, August 22, 2011

Stanford Update

It's hard to type when tears of gratitude keep blurring my vision. What I have been fervently praying for, came to pass tonight. To quote my mom, "I feel another miracle coming on!"

During the first week in August I traveled to Stanford to undergo their Double Lung Transplant Evaluation. It was four days of extensive medical tests. Although it was physically (and mentally) draining, I felt a sure sense of peace and calm that was very reassuring. For the duration of the evaluation, I knew many prayers were being heard and answered in my behalf because of the strength and hope I felt. I connected very well with the team there and despite a few concerns they mentioned to me during our clinic appointment, I felt extremely confident that the following Monday (August 8th)I would receive the great news of acceptance to their program.

I did receive a call on August 8th and was initially shocked when the doctor explained to me that after looking at the results of all of my tests, the surgeons would not consider doing a double lung transplant on me. Because my right lung collapsed in 1996, all of my organs had shifted and were stuck together with the sticky scar tissue and remnants of my damaged right lung. Ryan and I were on the phone together and we nearly crumbled with fear and uncertainty when we received that news. However, the doctor went on to explain that there was a slight possibility the surgeons would consider doing a double lung/heart transplant. They needed more information and wanted to request all my CT scans and X-ray's from 1995 on to try and track the progression of what happened to my right lung and to my heart. They gently told me to be patient and that they would be in touch when they got the information they needed.

We were with my whole family when we got that call and what we thought would be an evening of celebration, turned into a somber evening of tears, hugs and comfort. By the end of the night, we, as a family, had resolved to remain hopeful and start working on Plan B by researching centers who may be more familiar with my unique situation and/or more willing to take high risk patients. I still felt like even if Stanford would not do a double lung tx, but would do a heart/lung tx, they would be my first choice. We decided to pray specifically for that but also that we would continue to be guided and led in other options as well. After the initial disappointment wore off, the calm reassurance that this was in the Lord's hands returned fully and I was gently reminded to keep trusting.

My last request that night to my family was that we have the time of our lives the next few weeks while we awaited further notice. Chels and her whole family were here and I wanted to enjoy our cherished time with them. I did NOT want to perpetuate fear and worry but wanted to celebrate the love that exists in our family and have FUN!! Have fun we did and I have the pictures to prove it! I guess they took my request seriously because my mom drew up quite the itinerary....look forward to an upcoming post with all the details of the BEST two weeks of my year so far!

In the mean time, my mom and Ryan's dad Terry both immediately started extensive research and were both very impressed with Duke as they do over 100 lung tx's a year and despite the fact that they accept the riskiest patients who have been denied at other centers, have a very high success rate. We went ahead and started the process to get evaluated at Duke as well. I am scheduled to be evaluated there on Aug. 29th.

As you can imagine, it was quite a feat for Stanford to get all of the records they needed, let alone review them (there were likely nearly 200 films to look at!) After finally receiving all of the films, they presented my case at their meeting again tonight and I got a call from them letting me know that after careful consideration, the surgeons feel confident that a heart/double lung tx will be successful. They have accepted me to their program. I was so choked up after the news that the tx coordinator said, "are you still there?" I was there, I just couldn't talk with a lump of gratitude and relief in my throat!

Stanford was aware of and respectful about my desire to pursue Duke as another option and in fact, they sent Duke all of the results of my evaluation. After a lengthy discussion with my family tonight and following the impressions of my heart, I have decided to cancel the appointment with Duke and move forward with Stanford. I cannot discount the peaceful feelings I had there and the connection I felt with their team. I am 100% confident that they want me to survive and have only had my best interests in mind.

There is much more to discuss but I will update again soon with our next steps on this journey!

So many prayers of gratitude have already been said in our home tonight. We have expressed gratitude to our Heavenly Father for not only this outcome but also for the wonderful people in our lives who have held us in their hearts and remembered us in their prayers. We have asked that blessings will be poured out upon you for your love and goodness! Thank you, thank you!


18 comments:

Unknown said...

so grateful to read your wonderful news, sharlie! you and your beautiful family are always in our prayers! love, lona & kids ^_^

Uale said...

That's awesome news! You continue to be an inspiration to us all. We love you.

The Nixon Family said...

Miracles of fasting and prayer!!! I can't wait to continue to be a witness to your MIRACLES!!!

Cormorant said...

We are so elated at this news, Sharlie! Congratulations and good luck with all the (no doubt) many preparations for this tx. You are a pillar of strength and we love you!

Katie Harding said...

This is incredible news Sharlie!!!!!! We are so happy for you. The Lord truly takes care of his beloved children. You are amazing and we love you!

Emilee said...

God is good! Thank you again for sharing your journey with us. Prayers that this road continues to go in the right direction and that it won't be long before you get the call.

Marshall & Hayley said...

Shar--this is a miracle and a blessing! We can hardly believe this wonderful news! Wow. We love you and are continually praying.

Marsh and Hayley

Aubrey said...

Shar ~ I just heard the wonderful news. Wow! It doesn't surprise me though knowing you have a legend of angels pulling for you. We are so happy and hopeful for you and will wait anxiously to hear more updates. Love you!

Brandon and Katie said...

So so happy Shar. We heard the news last night. Were in Hawaii for a MonaVie trip and were with some good friends last night who know your story. We all said a prayer for you and asked them to keep you in their prayers. You are amazing. Please let me know how I can help with raising money for the surgery, etc. Were here for you girl!!!!!

The Stevos said...

So happy for you and your family Sharlie ! I will be thinking of you down here for sure !! I will be keep up with you post too !

Kyle Nelson said...

Sharlie I am so excited for you. You are an amazing example to me and we will continue to pray for you and think of you often.

Doris Jung said...

Dear Sharlie:

Thanks so much for sharing your brave journey with us, your USANA Family. I'm so inspired with your blog. God Bless;-)

KMiles said...

As I have learned...prayer works! I am so happy for you! We continue to pray for you and other CF'ers every night! Keep up the updates! Best of luck! Kirsten xoxoxo

Michelle S. said...
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Michelle S. said...

Sharlie we were so thrilled to read your great news! Alicia and I were in her dorm room getting her settled when we checked your blog. What a fantastic post! Alicia sends her love. You have had a tremendous influence in our lives. We love you, and are so happy about your acceptance!

Michelle S. said...
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Jayma Malme said...

Shar, I saw on Ryan's FB status that you were accepted and was thrilled, but after reading this post I have tears of joy streaming down my face. I am so so so happy for you!!! We'll continue praying for your health and the doctors' wisdom and for this miracle to continue. Love you, friend!

BEN and BRIT said...

Oh Sharlie, that is such great news! You are super strong through all of this and i can tell it is your faith that carries you. You, Shar, are a perfect example to me and so many others of humilty, hope and happiness through your trials. We love you stinker. We are praying for you everyday!