Guest Blog by CysticLady: Update on CysticGal III

I just got off the phone with CysticGal.  She wanted me to post an update.  I will also try to explain what happened last week that led up to her stay in ICU.  We were all very worried, especially her, and at the time I wasn't sure what I should and shouldn't write based on my speculations of what was happening from nearly 1,000 miles away.

I'm going to begin with a little history on myself, from the weeks prior to my lung transplant in 2003.  Three weeks prior to my transplant I went into respiratory failure.  Now, this can happen for a few reasons.  I had Type 2 respiratory failure which is characterized by both high carbon dioxide levels and low oxygen levels (and low pH, but I won't get into that).  This was hands down the scariest time of my life, not only because it was nearly impossible to breath, but also because I was told that at that point I was too sick to receive a lung transplant. 

The most simple explanation I know of is, that during normal respiration or breathing, your brain makes you exhale in order to rid itself of carbon dioxide.  Carbon dioxide drives respiration.  When you go into respiratory failure, your brain starts doing this backwards, and thinks it needs to breath in when oxygen is low.  The result is that you breath in more, and exhale less, your carbon dioxide continues to rise, and since your brain thinks you need to only breath in more, it keeps getting worse and worse until nothing works. 

Of all of the people I've met, the people who have been in respiratory failure are the most adamant about keeping their oxygen saturation at a safe but low level, like between 89-92.  This is because when your is given supplemental oxygen and you have lung obstruction, then higher saturation levels can lead to decreased ability to remove your carbon dioxide by exhaling.  This is very difficult because your instinct when you cannot breath is to turn your oxygen up.  And in fact, sometimes that may be a good idea.  Everyone should have a lot of guidance when on supplemental oxygen.

Back to CysticGal.  Last Sunday night CysticGal was having a horrible time breathing.  She thought that her BiPAP wasn't working because she continued to feel out of breath despite wearing it, and wearing it made her uncomfortable, so she decided not to wear it.  What she didn't know and nobody explained to her, is that she was going to feel out of breath anyway, and that it was really important to wear the BiPAP.  CysticGal was unable to sleep that night, and just huddled in her bed being out of breath.  I told her tonight that her inability to sleep was her body protecting her.  If she would have slept, she would have woken up completely unable to breath, or, not woken up.  I know about this body protection feature because my friend Jana also must be on BiPAP when she sleeps, and her body will also not let her fall asleep without it.  It is really amazing sometimes what our bodies can do to protect us.

On Monday CysticGal was out of sorts, and overly emotional, and she has very few memories of those days.  I received a call from a friend that was visiting, and CysticGal spoke to me incoherantly.  Then her friend got on the phone and told me that the BiPAP wasn't working.  I asked why she was saying it wasn't working, and realized that she made that decision based on still feeling out of breath, I made it very clear that CysticGal needed to put on the BiPAP and keep it on, that it is good for her.  I told her that she was going to be out of breath and that she needed to work really hard to breath.

Later that evening, CysticGal was in critical condition and they decided to move her to ICU and said she could possibly be placed on a ventilator.  This was very scary for all of us!

CysticMommy was already with CysticGal, and CysticDad flew there the next day.  CysticGal stayed in ICU until Friday night and then was moved to a floor for Pulmonary and Transplant services.  She is getting a bit stronger each day.  She is officially listed for lung transplant as of Thursday. 

Thanks again for all of the love coming our way.

Teeda (CysticLady)