Wednesday, June 29, 2011

Day 16...that's day 16 in the hospital. Nurses beware!

Believe me, I've had a few good cries here and I could tell you all about how C.F. sucks, but I'm not going to.

Instead I'd rather tell you about the moments in here that made me laugh, made me happy and gave me hope.

Whenever I get admitted, I can count on adorable notes and pictures from my nieces and nephews to cheer up my hospital walls. This time around, Sophie's note just cracked me up! My favorite lines were, "I think it's SO cool that you are so brave. I would never be able to survive with all the blood that you've seen. And, I can't believe how many things you've been through in the hospital and out! It's SO cool. You bewilder me."

Another thing I can count on is amazing support from my family. They completely rally around me and reassure me that I am not alone in this. My big sister Chelsea who I wrote about a few posts ago, arranged to fly here from Maryland the very hour she learned Ryan was taking me to the E.R.

She has four kids at home and is such a busy mom, I tried to tell her that I would be fine but she insisted on coming. I would have never asked her to leave her family but when all was said and done, I don't how I would have survived that week without her. My mom was in Israel and Ryan needed to be home with Harrison and Chelsea was just there for me when I needed her most. Ryan's parents, Zak and his family, Dax and his family and Suedy were also there for me in such a huge way; calling, visiting, bringing food (including my favorite delicious persian food) and helping with Harrison. Being with my family makes me happy so even though it's hard to be stuck in the hospital, I treasure the time I get to be with my family wherever we are!

Another thing that makes me absolutely swell with joy is being with Harrison. When I am in the hospital, nothing brightens my mood more than a visit from my sweet boy. I always hear his giggles from all the way down the hall and I get so excited to see and hold him. Cuddling with him on my bed (even if he is pushing all the buttons and basically folding me and the bed in half) makes me so happy and motivates me to stay hopeful and keep fighting!

Ryan snapped these "instagrams" on his phone.
Watching cool videos on the computer

Lazy Sunday. Harrison is nestled into my legs while I take a little nap!

The last thing I'll mention is something that brings me hope and makes me so grateful. That is the outpouring of love and support I feel from my extended family and my friends. The messages of encouragement, concern, love and promises of prayers on my behalf are not taken lightly. I am so grateful for every prayer and every positive healing thought sent my way. They are like fresh sips of air that help lift the heavy burden off my chest. They renew my faith, strengthen my confidence and bring me joy. They cause me to again marvel at all the angels I am surrounded by and leave me with soaring gratitude in my heart instead of worry or fear.

I just learned I am going home today and despite the rough few weeks I've experienced, I am leaving feeling very blessed!

- Posted using BlogPress from my iPad

Friday, June 10, 2011

Day 15... Why my heart is broken but my faith remains strong...Breathe easy Katrina.

I was so sure this was going to be a post all about Katrina's miracle, full of excitement and hope. I can hardly bare to be writing a post about losing Katrina instead.

Yesterday I pondered the fact that I have truly loved and lost and loved and lost some more and hoped and dreamed and wished and prayed. Many of my dreams and hopes and things I have fervently prayed for have come to pass but many have not.

16 years ago, I didn't believe my little sister Lex was going to pass away until she took her last breath. Despite the doctors giving her 3 days to live and the fact that she was receiving hospice care in our home, I still believed we would get a miracle and she would pull out of it once again. Why didn't this unanswered prayer destroy my spirit and my faith? In the midst of my anguish and sorrow at losing her, how could I still believe?

Something very special happened, maybe a small miracle in and of itself considering how fragile my faith was at that time. Instead of losing my faith, it was strengthened and instead of doubting my God, my beliefs were reaffirmed and became rock solid.

The pain was still there, debilitating pain and greif, but peace and an eternal knowledge were also there. I believe in God's plan for his children and I believe in His timing. I don't always understand it. I don't always know if I am strong enough to bare it, but I believe in it.

My faith and my beliefs are not a coping mechanism. They certainly help me cope with life's trials, but that is not why I believe. I have pondered the Atonement and the Plan of Salvation and have prayed to know that there really is life after death and that we really will be saved by our Redeemer if we have tried our best to love as He loved and tried our best to follow His perfect example, and my body has literally burned with confirmation in the affirmative. It is something I feel in my heart, in my brain, in my very bones. The truth of it fills my soul.

So, although I have shed many tears these last few days and my heart is broken that Katrina is gone from this earth, I believe God took her home for a reason. There had to be a reason, especially after more than forty people came forward to be tested and two selfless people (strangers to Kat) were found to be suitable donor matches.

I also believe with great joy that Katrina is celebrating a beautiful reunion with the sister she lost years ago to her same disease, Cystic Fibrosis. And last but not least, I believe Katrina is finally breathing easy.

Look at that never failing smile. I love you Katrina and will forever hold you in my heart. Give Lex a hug for me...

- Posted using BlogPress from my iPad

Wednesday, June 8, 2011

Day 14...Ali's Wedding Extravaganza!

Tomorrow I plan on doing an update on Katrina. I don't have all the info. yet but please keep praying, there have been developments and I believe Katrina will get her miracle! I am going to share a few pictures from my cousin's wedding. I never really blogged about it, just about how going to Utah was super hard on my health. Never mind that! This is the FUN stuff!

This wedding was unbelievable. It was so special to be in the Temple with Ali and Eric. Ali is one of the most beautiful people I know. She's gorgeous yeah, but that's not the kind of beautiful I'm talking about. Her soul is beautiful. She is wise, kind, mature beyond her years, she has a strong faith and testimony of the love of her Savior, she is generous and pure and so so fun to be with. There is not a time that we are together that I don't end up splitting my gut laughing!

Check out this stunning couple:

After the ceremony:

I love this picture of me with my mom and Grandma. I don't know if I have any pictures of just the three of us.

The Reception: (Watching Ali dance with her dad was definitely the most touching moment of the night, they were both so emotional and full of love for each other. It was beautiful.)

I truly love Ali like a sister and was honored to spend this special day with her!

Day 14 of the Healthy Home Challenge: "Plastic Islands?!?!"

Even though this book focuses on creating healthier homes, it also discusses how plastic has an impact on our much larger world.

"If not recycled or disposed of properly, plastic ends up in our waterways, degrading so slowly that there are now massive "plastic islands" floating in the Pacific and Atlantic oceans. Bit by bit, lighters, trinkets, grocery bags, and containers break into smaller fragments that fish, marine mammals, and seabirds mistake for food. This can be a lethal mistake--both for the animals and for us.

Suddenly, the toxins we've worked so hard to avoid in our home are found in the marine food chain, where they will make their way back to our dinner tables."

There are many solutions to cutting down on the amount of plastic in our homes and in our environment, but one simple and inexpensive solution is to use reusable grocery bags. I see these for sale everywhere and have accumulated quite a few. I keep them in my trunk and use them as much as I can.

I am still getting in the habit of grabbing them before I go into the store and have forgotten, but as a part of this challenge am recommitting to be more diligent in using these. Today at Target I whipped out my reusable bag!!

Sunday, June 5, 2011

Day 13...A Birthday Wish

This is my beautiful friend Katrina. Today is her birthday, but Cystic Fibrosis is killing her. She is in ICU, on a ventilator and she has two weeks before she loses the option of having a life-saving double lung transplant. Here is a letter from her mom:

Hello Friends and Family:

Yesterday, my daughter, Katie was moved to ICU at Thornton and was put on a ventilator. This means bluntly that we have only two weeks to discover two donated and fully vetted and qualified transplantable lung lobes or to have a cadaveric transplant and to successfully transplant those lungs. After two weeks on the ventilator there is no more opportunity for transplant. Moreover it is extremely tough for a CF patient to be able to live after being on life support for that length of time.

Here is exactly what you can do to help.

· If you are under 55, have type A or O blood and are at least 5’ 9” and are willing to give up one of your five lung lobes to Katie. Call my husband at (760) 579-8275 and we will get you tested to be a cross-match. Katrina is a very difficult match because of being transfused years ago and therefore her blood chemistry changed. The test to see if you are a suitable cross match is simple and painless. If you are a match, USC will take it from there.

· Post the need for transplant donors to every friend and Facebook contacts right now! Please ask them to consider giving one lobe to her IF they qualify. Please make certain that they understand how critical it is to act now.

· Please ask your friends, family and congregations to pray for Katie now.

· Because of the length of time it takes to find a donor…and now we have only two weeks to accomplish this…we can only identify potential donors for testing through this first week. Please understand that there is absolutely no time to waste.

Please I implore you to act now, right now. Please do not hesitate.

Thank you for your consideration in lovingly and prayerfully considering this massively bold request immediately. Please help me save my daughter’s life.


I would give anything to be able to help Katrina. The hardest part about this is being so helpless. I don't want to lose another friend to this disease. It is so painful. Unfortunately, I don't think Katrina would appreciate my lungs! What I can do is send my love and all my energy and prayers for her at this time. Ryan will be tested tomorrow to see if he is a match. We don't know what else to do, we love Katrina and her husband Phil so much.

My birthday wishes for Katrina are:

That in the next few days, a compatible donor will be found and that she will receive either a cadaveric transplant or a living lobar transplant.

That she will regain her strength and be able to fully recover from this operation.

That she will celebrate many many birthdays to come and continue to bless the lives of everyone who knows her.

Happy Birthday Katrina, I believe in miracles. I love you. xoxo

Friday, June 3, 2011

Day 12...Easter 2011

Easter definitely snuck up on me this year as I had just returned home from Utah and wasn't feeling very well. However, Easter is always a special holiday for me and the significance of the holiday was not diminished. If anything, it is even more poignant when I am struggling with my health because it reminds me that no matter what happens, because of Christ's sacrifice, I too will be resurrected one day and be able to be with my family forever. What an incredible gift. I don't fully understand the complexity of it but I am eternally grateful for it.

While I stayed home and did treatments and rested before church, Ryan took Harrison to his parents for a little Easter egg hunt and some special time with Grammy and Grandpa. Bless Linda for filling the eggs with almonds instead of candy!! I was thrilled and Harrison didn't know any different!

After church we had a beautiful Easter dinner at my mom's. Terry and Linda joined us as well as our dear friends Bob and Daryl. I am so grateful for my family and love spending these priceless moments with them. Despite not feeling 100%, it was a wonderful Easter!

Day 12 of the Healthy Home Challenge: Germaphobe alert!

From The Healthy Home book, "We've become obsessed with living in a germ-free environment as a result of the scare tactics employed by marketers. We have bona fide germ phobia when we could be focusing our energy on something positive, like boosting our immune systems. ...Your body, when healthy, is beautifully designed to handle germs. We don't need to live in a scrubbed-down, sterilized bubble."

This section of the book on household cleaners was so eye-opening. I know I and other Cfers have to be especially careful of germs but the book also points out that most of the solvents we are using to sanitize our homes are toxic and can break down the molecules on our skin and in our lungs.

The book encourages using products that are nontoxic and biodegradable and/or plant based. I just bought a few bottles of nontoxic, plant based cleaners and air purifiers for our home at Sprouts. It is also very easy to make your own household cleaners with a few inexpensive ingredients that most of us already have in our kitchens. There is a whole "recipe" list in the book.

The parting tip is this: If you are cleaning with products that you wouldn't eat, wear gloves!

Wednesday, June 1, 2011

Day 11...Breathless Mom Fundraiser

Ask NOT and ye shall RECEIVE...

Last summer when I got sick and realized that a double lung transplant was probably coming sooner rather than later, one of my best friends of 25 years asked how she could help. When my only reply to Jessica was "pray for me," she decided to take matters into her own hands and asked my mom to set up a Medical Fund for me. Jessica and her sister Mique are the founders of Queen Bee Market. They ask the amazing vendors who participate in their market to share part of their proceeds with different local charities (that's how they roll... so generous!) They designated my medical fund to be the local charity for their fall 2010 market. I was simply overwhelmed.

As my journey toward transplant progresses, another dear family friend, Heidi Lee, asked my mom if she could also help. She created the "Breathless Mom" 30 day campaign to raise funds for medical expenses in the future. Just as I was overwhelmed with Mique and Jess's thoughtfulness and generosity in organizing and raising funds for me, I have been completely touched and humbled by all Heidi and her team have done for me. I know they have put in so much work and dedication to put the site together and the video together. My dear friend Lori took all the photos of me and my family and Denise Yamada, who covered Lexi's story in the news and has remained a treasured family friend, narrated the video.

I will go into the details of where I am "at" in terms of my health and transplant in a different post soon but the preparations for transplant have begun. I have felt a lot of guidance and peace during the last year and I am hopeful for a healthy, active future! The funds that have been raised have been such a blessing. It is one less thing that I need to stress and worry about as there will definitely be significant medical costs.

What amazes me is that I did not ask for my friends to do this for me, they just perceived a possible future need and took it upon themselves to help (in a MAJOR way!). I guess true friends usually do know what you need before you even ask for it. Incredible. For all who have supported these fundraising efforts, what can I say but thank you?! I feel so loved and blessed. I truly am surrounded by angels who lift me and give me strength, these campaigns have reaffirmed that to me!

Day 11 of the Healthy Home Challenge: Teflon toxicity!

From The Healthy Home book, "At high temperatures, Teflon is known to release potentially hazardous fumes and particles into the air. ...a nonstick pan at just 680 degrees F on a regular electric stove released at least six toxic gases, including two carcinogens, two global pollutants and a chemical that is known to be lethal to humans."

Wowzers! It also talks about how DuPont recommends that birds be removed from the kitchen before cooking with nonstick pans because they have been poisoned with the fumes and have suffocated after their lungs hemorrhage and fill with fluid. YIKES!

My lungs may not be as delicate as those poor little birds' lungs but I don't want to do ANYTHING to harm the 18% lung function I have left!

Today I bought a "green," PTFE (polytetrafluoroethylene) free skillet. I bought it at Target and it was about $30. I eventually want to replace all of our nonstick cookware but I use the same small skillet a few times a day, so for now, I just replaced the one I use the most. It's a start!

The book's simple solution for someone who must use a PTFE-lined pan is to keep the stove's burner on medium or lower and to never preheat an empty pan.

I have gotten such great feedback on these tips. Please remember to let me know if you are trying any of the healthy home tips and leave your contact info. either in a comment or in an email to and I will send you The Healthy Home book as a gift!