1 Week In

I have been on Valcyte one week. The differences between being on the Valtrex and Valcyte are clear but not extreme. I am back to two naps on Valcyte. I have been getting about 11 hours of sleep at night. (It would probably be more if not for the scampering of little feet.) After breakfast and some reading I get that feeling I had when I first started the Valtrex where I have no choice but to sleep. After lunch I get in another nap while fading in and out of guided meditations on youtube until my alarm goes off to remind my body of the most important part of the day- picking up the kids from school!

I have learned to delegate a lot of responsibilities during this season, I want school pick up all to myself. I love the way the kids see my car in line and start to smile. Sometimes they even come out of school holding hands or skipping together. When they get in the car they both rush the front seat to try to be the first to talk. The whole thing completely energizes me and puts a smile on my face. Sometimes, if I'm having a good day we'll stop at Starbucks on the way home for a hot chocolate.

I have released myself from all other responsibilities- cooking, cleaning, grocery shopping- and delegated them to someone else. There is a huge amount of freedom in allowing my body to follow its desired rhythm of rest. Dr.Lerner has been telling me this for months but I insisted on continuing on in my state on exhaustion. I thought I would find guilt in rest, but I'm finding freedom!

The most difficult part of being on the Valcyte has been the extreme pain in my neck and upper back that I've been getting in the evenings. I don't know how to explain it because it is like nothing I've ever felt until my life was altered by CF. Different nights I try different things. Some nights it is a scalding hot bath. Other nights it is ice. Other nights Jim generously gives me a massage or I lay on a Migun bed. Sometimes it helps to talk to distract me. Sometimes I can't open my mouth because it takes focus not to cry. Simply put, my prayer today is that this nightly muscle pain would go away.

And so we begin

Tomorrow is the big day. I start on one Valcyte pill and by the weekend will be up to 2 pills every morning. That's a lovely $120/day worth of Valcyte. Note to self: watch the drain when talking pills. Thankfully I have a husband who reminds me that everything we have belongs to God anyway.

Is it the right choice? Well, I spent a lot of time over the weekend doing research on Valcyte after the pushback I got from family and friends for taking a drug with so many risks. After much prayer and the youtube video of Dr.Montoya's research of Valcyte's effectiveness I feel certain we are taking the right approach. I am hopeful and dare I say excited to pop my first pill tomorrow morning! When I think about the next phase of my journey this verse comes to mind:

"For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."
Isaiah 43:19 NLT

Thank you, God, for bringing me to this place. For providing great medical care, for providing loving care for the kids through school and our new nanny, for our strong family that has provided emotional and financial support, for the intimacy that you have brought to our marriage through this challenge and for your continued extravagant goodness.

A new direction

It has been a long time since I've written, basically because not much has changed. For the last few months I've been stuck around a 4 on Dr.Lerner's 10 point scale. (I was a 4 when I came in.) Basically that means I am off the couch 4-6 hours a day, with minimal socializing or work. I spend most days laying down and have not taken a day off napping yet! (Down to one nap most days though.)

Because it has been 7 months of not much improvement Dr.Lerner would like to go in a new direction. This is standard operating procedure for him at this point in a patient's journey. He would like to put me on 450mg of Valcyte a day. Not every doctor would take this route. Most doctors in the US at this point would say that this is as far as they can take me and that it is time to start to manage my symptoms and learn to live this new lifestyle. They suggest meditation, gluten free diet, antidepressants etc. But, Dr.Lerner and Dr.Montoya (out of Standford) have done extensive research that Valcyte can actually get rid of enough of the virus to life an active lifestyle.

The downside of Valcyte (and of all intense medications) is that there are both risks and side effects. After weighing the risks Jim and I have decided that we'd rather take the risk and ask for a lot of prayer than settle in to this rather exhausting lifestyle. As always, Dr. Lerner will be doing monthly blood tests and EKGs to monitor what he can. Here we go...