Monday, October 31, 2011

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!


Jen Larsen said...

Thank you for the update. I can always talk to family but I would rather read it from you! Way to tell those doctors! We love you Shar and we are constantly sending prayers your way! Big hugs from Malaysia!

Wendy Remington said...

Sharlie, you have such a beautiful way of expressing yourself, and letting those of us who are far away understand part of your journey. Your mom is so wise, I liked her explanation about crying. I am glad you are improving and learning how to communicate with your team. Love from San Diego!
Wendy Remington

Kristi said...

Hi Sharlie,
You dont know me but I found your fundraising page on a mutual friends fb page. I continued on to read all about you and your adventures ( sorry trying to stay positive). I am a mom of two girls and I live in Encinitas. I was just about to update my Caring Bridge page for my dying father when I found your story. My parents moved here 7 years ago when my second baby was born. They live 1/2 mile from me so needless to say my kids adore their grandparents. My dad has suffered from Alzheimers for many years but has kinda fooled the drs and all of us. He is an amazing survivor. On July 4th he fell and broke his hip. Since then he has been in and out of rehab, nursing homes, ER's, etc. He is now home in a hospital bed in my parents living room. We have turned their house into our hospital. He is bed ridden and is dying. We have had Hospice in and out of our life now for months. Amazing group of angels.
I am not sure why I am sharing this with you but you are giving me hope. I have been so sad and depressed for months. Seeing my best friend, hero, grandparent suffer, and get weaker and weaker everyday has been so painful.
Your story is inspirational. I wish I could reach out and hug you :). Just know you now have one more person praying for you and thinking about you in San Diego...kristi

Emilee said...

I'm so glad you were able to get your way! It's hard going to new docs that don't know how compliant you are and how in tune you are with your body. Good job on sticking up for yourself. You inspire so many Shar, and you do it with grace and dignity! My prayers continue to go out for you and your family. HUGS!

aka-mama said...

so glad you are " home" resting. Thank you for the update. Praying for you and your family.