Tuesday, August 2, 2011

This is happening...{brave gulp}

Stanford Double Lung Transplant Evaluation

Day 1 --

The day started with 12 vials of blood and a cup of pee : ) It could only get better, right?!

Overall, I felt like the day went better than I expected. I knew today was going to be an extremely long day and I prepared myself to be very uncomfortable during the barrage of tests. There were a lot of tests and they were uncomfortable but I was so grateful for the wonderful medical technicians who took care of me today. They were honestly so kind and considerate of my comfort level. I was pleasantly surprised and felt like so many prayers that I would feel strengthened to be able to handle this day were answered.

After the blood draw I had an echocardiogram with bubble study. I was unclear what the difference between an EKG and an echocardiogram was and today I had both, so I now know the difference. The echocardiogram is basically an ultrasound of the heart and takes images of the chambers, valves and blood flow. The included bubble study meant that they had to start an I.V. and quickly push saline towards my heart. Then they asked me to cough while they pushed it in so they could make sure there was no holes between the left and the right sides of my heart. Interesting. An EKG measures the electric activity of the heart and the heart rate.

The next study was a bone density scan. I learned that from age 0 - 30 we build bone density and from age 30 on, we slowly lose bone density... so I have that going for me : ) They scanned my lower back, hips and pelvis. It was minimally invasive and didn't take too long.

Okay, then I headed down to radiology for my chest x-ray and all I have to say about that is that my technician was seriously Cam from Modern Family. His oozing gentleness and kindness was one of the best parts of my day. I was actually trying not to laugh during the test because he kept telling me how great I was doing and thanking me for who knows what (holding my breath great! ... and positioning my body perfect!) I don't think he knew that I've had literally hundreds of chest x-rays. He was seriously so so nice and I could hardly stand his chubby adorableness!

We broke for an amazing lunch. Holy cow, after the required fasting since 8:00 the night before, I was starving!! My mom and I rewarded ourselves at the California Cafe just down the street from the hospital and it was delicious! I had a trio of yumminess with an open faced steak sandwich, a side of 4 cheese mac and cheese and a Caesar salad. As Harrison would say, it was a great "pit stop" for the "fuel" I needed for the rest of the day.

Next was the meeting with the Social worker and that couldn't have gone better. I really liked the social worker and felt completely comfortable sharing my thoughts, feelings and personal history with her. She answered lots of our questions and was super nice and genuine. It was a two hour appointment.

Then I endured the hardest part of the day. An hour and a half of PFTs (pulmonary function tests) with two failed attempts to draw a blood gas to start things off (a very painful arterial stick as opposed to a vein draw). The stabbing pain that shot up my arm and down my legs when she stuck me almost had me off the chair. Unfortunately, she was not able to get it. She was a sweetheart though and said it was more painful for her to hurt me than it was for me to get hurt and I possibly believe her. I could tell she felt really bad even though I kept telling her it was okay, that I have little veins and arteries and it wasn't her lack of skill.

I was a little amused/bummed when we did the first PFT and she thought there was a glitch in the test. I asked her what went wrong and she said, "well, this can't be right because it shows your FEV1 at 19 percent" Too bad it's my lungs that are malfunctioning and not her machine. I had to explain to her that there was no glitch.

After the PFTs I had my last test of the day, a CT scan of my abdomen, pelvis, chest and sinuses. This required another I.V. for the contrast solution. The tech told me that the contrast would make me feel warm and funny and that I would feel like I wet myself but not to worry because I wouldn't really. I am so glad he told me that because sure enough, when they pushed that stuff through my veins, I instantly had the weirdest sensation that totally felt like I had just peed all down myself! I would have been freaking out if he hadn't warned me!

Tomorrow is another day of tests and appointments and I feel confident that the strength I felt today will stay with me for the duration of this evaluation. I am so grateful for the prayers that are most certainly being heard and answered. I know that the love and support I feel is carrying me through this, and although I know this process will at times be overwhelming, I will continue to be more overwhelmed with the goodness of the people in my life and with the blessings that I feel the Lord pouring down on me.
- Posted using BlogPress from my iPad


Katelyn said...

Sharlie, I am so thankful that you had such a good epxerience with what could have been horrible. Praise the Lord for his provision - I hope the next round of testing puts you in the paths of other kind and loving people. There is no doubt that while they are showing loving kindness, the Lord is using you to show his as well. I love you and am praying that all goes well and you continue to have good technicians, nurses, etc.

Kurt and Kathy said...

Sharlie, so glad to hear that your day went well. Kurt and I are praying for you and your family. Thanks for sharing your experiences on your blog, you have become a part of our family... lots of love to you today, may the Lord continue to bless you.
Kurt and Kathy Marler

Cormorant said...

Wow Sharlie, this is happening! Day 1 seemed like a lot, but I'm glad it went so relatively well. Thoughts and prayers are definitely with you during this process and beyond. You are amazing!

Craig said...

im so glad everything is going well! it was sooooo good to see you on your mom's birthday. you're amazing and i love you!!! we're ALL cheering you on.

Craig said...

p.s. oops this is katie- signed into our friend's account.

Dax said...

Thanks for sharing your experiences. I hope writing about what you are going through helps you deal. Please keep updating. Good luck today. Love you.

-syd said...

We (Syd & Abby) are in Rexburg and appreciate you so much for maintaining the blog! We want to hear ALL about your days and join in your positive reassurance at the completion of day 1. You know that we are all thinking of you and praying for your burdens to be light. Love to you and Collette and your sweet family in this journey. xoxo

e & a said...

you are a trooper!! I'm so glad you had some comic relief from cam during the process :) i love you so much and i'm so glad you updated your blog with the details. i know this is minimal to everything you are doing but eric & i are donating blood in your honor on thursday. neither one of us have done it but we signed up a few weeks ago because you were our inspiration!! xoxo

Berry Banks said...


We've never met but we talked last year about flu shots. I hope all the best for you on your journey. I see a lot of CF'ers at the UofU pulmonary rehab each week. I can understand your feelings as my docs want me to be evaluated as well.

BerryBanks SLC, Ut

[BrookeO] said...

I love you.

The Nixon Family said...

Love you. I will pray for you and your family. Fight hard!!!

Grandma said...

Shar, you continue to inspire all of us with your faith and courage. I know the Lord is blessing and sustaining you through these trying times and we're so grateful for the loving care you are receiving. We love you more than words can express. Grandma & Grandpa

Zachary Ross said...

Sweet Sharlie, Thank you for the update. We love you so much and are thinking of you and praying for you constantly! The kids made some special tiles for you at Ceramics they can't wait to give to you. Sawyer started pre-school today and before he left we had a prayer and he prayed that you would be healthy. Keep us posted and know that we love you so much.

Lynda said...

Thank you so much for sharing your journey with us. Your story is one of courage, faith and love. May yours and all those that are caring for you, be blessed.

Katrina said...

Sharlie, I just wanted to let you know that our family is praying for you. Your story has touched us because we have a friend who's son also has CF. I have even referred her to your blog since he is only 7 right now and I wanted to give her some hope for his future. It think your story is amazing and pray that all goes well with the transplant.


We go to church with your brother Zach :)

The~Beach House said...

A couple weeks ago, my best friend Tory, shared an experience with her son who had a double lung transplant at Stanford a couple years ago. He was on the golf course and was APPRECIATING his "new" lungs and the deep breaths they are providing him!

A year from now, I can see Sharlie running along a path chasing Harrison and laughing with tears of JOY. She stops, smiles and says to Ryan . . . I CAN BREATHE!!!

With a Heart Full of LOVE, Laura

Anonymous said...

I know you don't really know me. I know your situation (generally) because of Zak. You help me to be so much more thankful for things I have so taken for granted. You are so brave and the most cheery person I have ever read about!!!! You could easily complain, but choose not to. You will be in my prayers. God gives us strength to endure things supernaturally and that will be my prayer for you. May God bless your every minute!!!!