Great news

After what seemed like Forever, I got my cepacia test results back and they were NEGATIVE! I have never been more relieved in my life.  I was re-activated on the transplant list also, today!  Now I need to get my back re-packed and back into my car so that I'm ready when I get my call!

inactive, again

I'm inactive on the transplant list until they know more about which cepacia bacteria I cultured. I will post again when I hear more news.

At the doctor's office I had to wear a lovely mask, and everyone who had contact with me wore mask, gown and gloves. I felt like I had the plague or something. We discussed what action they were taking. Since it's so rare, my doctor has been and will be consulting with other CF centers to learn how they handle their patients with cepacia and what the protocol is for treatment. They took another sputum culture and will send both that one and the one from a week earlier to a special lab in Michigan that deals exclusively with cepacias so they can identify which strain it is. The wait could be a short as one week but as long as 8 weeks! He told me not to worry, though, because there are different strains of cepacia and there is a chance that it isn't the aggressive B. Cepacia. And if that's the case, they may be able to treat it and I'd still be eligible for transplant. So until I know, keep me in your prayers. I need all the help I can get!!

bad day

I got my PICC line put in, with absolutely NO complications, which is a first. Later on in the day on Thursday I get a call from the nurse at the CF clinic. She said that my doctor wanted to see me Friday. After some questioning about why on earth he wanted to see me, because he had just seen me the day before, I knew in my gut that something was wrong. I emailed my doctor and he asked if he could call me. Right away, I asked, "Did I culture cepacia?" and he told me I did. Needless to say the next 24 hours I was an emotional wreck.

back to basics

I went to the doctor here in Wichita to get PFT (pulmonary function tests) done.  My lung function was down a bit to 27%, capacity to 39%.  Also, I asked my doctor flat out "Did I culture cepacia?" and he said NO! Which was a HUGE relief!  I decided to go on IV antibiotics and we got it set up to start tomorrow.  Hopefully the PICC placement will go smoothly, since they don't sedate here.

absence of pain

Yesterday was my first day without a headache! But my chest congestion is still pretty bad. My O2 sats have been low without oxygen so I've had to put on my "big girl panties" and wear it in public. :( I know I really do need it.

another appointment

I went to the clinic to give a sputum sample (aka, spit in a cup. yeah, i know, real attractive) so they can determine which organisms (viruses, bacteria, fungi) I have in my lungs. The main two reasons I wanted to have one done were a) because I wasn't getting over this cold I had been fighting and b) I wanted to make sure that I tested negative for a certain strain of bacteria (Burkholderia cepacia) which would make me ineligible for transplant.  And that would be BAD NEWS.