Sunday, February 14, 2010

A CF Update

It has been a while since I updated on Will's health.  He continues relatively stable on 3 liters of O2.  He is off inhaled antibotics 3 weeks on Monday (it is good to give the bacteria a break to try to reduce resistance) and he is tolerating it okay.  As is expected when he goes of antibotics, his congestion is steadily increasing.  He also had a few days of persistent low-grade fever last week, although that seems to have resolved.  Another way we know that his chronic infection is worsening is that his oxygen saturation is persistently lower than it has been; 98 is the highest it has been, and that was while sleeping.  His satruation tends to hover in the mid 90s during the day and drop into the low 80s when he does his breathing treatments.  Low 80s is pretty scary.   He's tired and feels draggy; appitite down, generally just feeling sicker than usual.  So, he will go on with this for as long as he can tolerate it (or until it gets worse) and then we'll call the clinic and ask about (probably) a corse of IV antibotics. 

In other news I'm sad to pass along that Eva Markvoot is likely in her final days of life.  Eva has CF and had a lung transplant a few years ago.  She has the same type of lung rejection as Will does, although hers has moved much faster. She was re-listed for another transplant, but it looks like she is now too sick and it won't come in time.  Eva has been a huge ambassador for CF and through her outreach on organ transplantation has doubtless saved many lives.  If you are moved to keep her and her family in your thoughts and prayers or visit her site and wish her well, I think that would be super. 

And, on St. Valentine's Day, I encourage you to search your heart and, if you haven't already, sign up to be an organ and tissue donar and make your wishes known to your family.  You can find out how to sign up here, and can register on line in many states.  I hope today brings all visitors to this place many opportunities to give and receive love. 


mekate said...

Damn CF. I am so sorry for your friend Eva, gosh darn.
And I know you and Will will know when it's time for the IV, until then, I hope that things go as smoothly and uneventfully as they possibly can.

thinking of you and sending love
Happy Valentine's day.

Mad Hatter said...

Dear Elizabeth - I'm sad to hear about Eva. I'm also sorry to hear that Will's infection seems to be worsening...It's good that you are both so aware of how to juggle the need for rest between the rounds of antibiotics. I hope the IV beats that nasty infection into submission. Sending lots of love and hugs to all three of you.