The Mother of all Updates...

Not to be confused with "the mother of all hot wheels tracks" which is the current internet video that is requested daily from Harrison!

Well we've been here about two months now and it has been a full two months! We have tried to make life here as normal as possible and we have a pretty good routine. We obviously miss home dearly but are doing our best to make this waiting time an "adventure!"

Los Altos is a charming community and we are within walking distance of the library and the adorable, quaint town center with yummy restaurants and cute boutiques.  My brother Dax described the beauty of this place better than I could. He wrote about his time here on his blog. He traveled here to help us move in and as much as I appreciated his help lifting heavy boxes, setting up our computers, setting up my treadmill, and making yummy meals for us, I appreciated even more his calming brotherly presence. That presence, with his gentle shoulder squeezes and his ability to make me laugh, started our time here in the right spirit.

When we first got here, I was just off a "tune-up" (otherwise known as a three week stay in the hospital), so I was feeling relatively good. My lungs felt clear and I had a refreshing energy which was I'm sure part due to the fact that we had taken this step towards transplant and the burden of "not knowing" had lifted. 

I met with my surgeons and also met the CF team here for the first time. I was encouraged by my meeting with the surgeons who would be preforming my transplant. They were very professional, yet down-to-earth. They answered all of my questions without making me feel rushed. Ryan recorded most of our conversation and I will summarize my questions and their answers in a separate post. The bottom line is that I felt very comfortable with them and had that reaffirming "good, peaceful" feeling while talking to them. Despite that good feeling, after talking to them, the reality of everything hit me very strong, and I couldn't help crying the whole way home.  Ryan just held my hand and let me cry. I knew he understood.  When I got home my mom hugged me and said something to this effect, "crying doesn't mean you're weak or afraid, it just means you are letting yourself feel this experience." It was comforting because I didn't know exactly why I was crying after having a good, positive appointment and I realized I was just allowing myself to "feel" the enormity of the situation without letting go of the peace and hope that is so prevalent.

These last few weeks have been a little bit rough as I got a cold that started out as a sore throat and quickly turned into fevers and congestion. Unfortunately, I am resistant to any oral antibiotics that could help and I couldn't bear the thought of going back in the hospital so I just tried to deal with it on my own by upping my treatment schedule, getting lots of rest and increasing my supplements. When the CF clinic found out I hadn't called them as soon as I started getting sick, they were NOT happy. They scheduled an appointment and then admitted me once they saw me. I am used to going into the hospital on my own terms and I felt like they were putting me in because they didn't trust me so it was very hard.

Being in a new hospital with new doctors and nurses who didn't know me was discombobulating and my physical and emotional well being spiraled downhill quickly. I wasn't sleeping well or eating well and the miscommunication was frustrating to say the least. After two days of being physically exhausted and emotionally overwhelmed, I did something I've never done. I asked my doctor to let me go home. There had been a failed PICC line attempt so I still just had a peripheral I.V.. I told him that I thought they had jumped the gun on admitting me and begged for a week to prove that I could get better on my own without committing to three to four weeks of I.V.'s plus more hospital time. He let me go on the condition that I would come in if there was any decline and that I would come to clinic in a week so he could reassess the situation.  It was such a VICTORY! I continued what I had started at home before they put me in and although I am not back to baseline, I am gaining strength every day and am so glad to be home healing with my family.

That follow up appointment took place on Friday and although I was a little nervous they would think I hadn't improved enough, I felt confident in the progress I had made. Fortunately, they could also see the improvement and didn't feel I needed to be readmitted. What a relief!! I am a very compliant patient and need to work on being assertive and advocating for myself, so this was a very good lesson for me. I knew what my body needed and even though it was challenging for me to voice it to my doctor, he listened and trusted me in the end. I know that experience was good for my confidence in communicating with my doctors and will serve me in my future encounters with them.

I am so grateful for the prayers that have continued in my behalf and am certain that they played a big part in me being able to endure these past few weeks and get home from the hospital quickly.  I am so so grateful for your love, support and prayers always!

Happy Halloween!

Some Say I'm a Dreamer...

We are waiting patiently here in Los Altos and I realize I have not been a very diligent updater. I have an appointment with the tx team tomorrow and I will give a full report on my health status after I meet with them. It's been a rough few weeks but I feel like I am at least holding my own right now so that is encouraging.

For now, I just wanted to share something a little different. I have never recorded my dreams before and I usually can't remember anything about my dreams once I wake up no matter how much I want to recall them. I had a very vivid dream last week and it has stayed with me all week. In fact, I have thought of it every day since.

Dreaming about Lexi is a gift. It doesn't happen often, maybe a few times a year (that I'm aware of), but when I wake up and realize I've dreamed about Lex, I immediately try to fall back asleep into that same dream so I can see her again. It never works!  Last week when Lexi was with me in my dream, I woke up and found to my surprise, I could remember every detail about the dream. I don't think it is a coincidence, I think I am supposed to remember this dream...especially as I am being wheeled into the operating room.

I was on an operating table, all prepped and ready to be transplanted. The room was big, light and spacious. Derek Shepherd and Meredith Grey may or may not have been there but Lexi definitely was. She was not only there, she was laying on the operating table with me. She was holding my hand and we were both calm and comfortable. As the surgeons started explaining the procedure to me; how they were going to put me to sleep and then make the incision etc. etc., I asked them where my sister was going to be as they were operating. They looked at me and said so definitively, "Oh, she's going to stay right there on the bed with you."

I thought this was a very unorthodox allowance and questioned if it was a good idea.  In my dream, I didn't get the message because it was so real. But, when I woke up, I was struck with the significance and was grateful once again for the reassurance I am constantly receiving.

The beauty of this incredible life...Takes My Breath Away.

These posts don't get easier to write. I am numb with sadness tonight. One of the greatest blessings of having CF is the incredible connections you make with others who have CF. On the other hand, the hardest part about having CF, BY FAR, is losing the ones you love and cherish to this devastating disease. I only met Leslie a few years ago. When we were introduced, she told me I was her hero for having the courage to go ahead with my pregnancy. I answered that she was MY HERO for showing us all how it's done...fighting so gracefully and being an example of a vibrant, beautiful and strong CFer!

This picture of us was taken last year at the Women Who Take Our Breath Away luncheon. Leslie and I were fellow nominees. As you can see by my red puffy eyes, I was grateful (and emotional) to be honored with and sitting next to one of my heros. 

You will learn from the video below that Leslie lived a life full of adventure and passion despite her physical limitations. She celebrated her 50th birthday this year and inspired ALL who knew her to enjoy life and live it to the fullest. Her days and months were filled much like mine, with treatments, coughing and in and out of the hospital, but she certainly didn't let that prevent her from completely loving, living and inspiring others to "BELIEVE...anything is possible!" 

Breathe Easy Sweet Leslie, you will be so dearly missed. 

Angel Highlight #2 - Run for Lungs!

 Last Saturday, these five people were on my mind and in my heart:

Lee Taotafa
Jamie Pyatt
Corey Toomer
Rachel Hazen
Rob Hazen

They were running the St. George Marathon! I couldn't help throughout the day wondering how they were doing, and where they were on the course. I prayed several times that the strength their love and support had given me would return to them a hundred fold while they endured running 26.2 miles that day! A few months ago they set up this Give Forward site and asked their friends to donate $1 per mile to my medical fund. They have raised almost $6,000.00 already!! They shared our story with a local neighborhood paper. I am so blessed to have these people in my life. They are truly angels!

 

                                Corey                                                         Rob and Rachel

                                

                                          Lee                                                      Jaime