Saturday, December 12, 2009
Thursday, December 10, 2009
It seems a bit weird to say goodbye to someone through a blog, but considering I met Paul online, our relationship was mostly online, and he encouraged me to start blogging...this seems oddly important. So...here it goes...
Tuesday, December 8, 2009
she must be hurt very badly,
Tell me what's making you sadly.
Open your door, don't hide in the dark,
you're lost in the dark, you can trust me,
'cause you know that's how it must be,
Lisa Lisa, sad Lisa Lisa.
Her eyes like windows,
tricklin' rain upon her pain, getting deeper
though my love wants to relieve her.
She walks alone from wall to wall, lost in a hall,
she can't hear me, though I know she likes to be near me,
Lisa Lisa, sad Lisa Lisa.
She sits in a corner by the door.
There must be more I can tell her.
If she really wants me to help her,
I'll do what I can to show her the way,
and maybe one day I will free her,
'though I know no one can see her.
Lisa Lisa, sad Lisa,
Lisa Lisa, sad Lisa Lisa.
Friday, November 20, 2009
Tuesday, November 10, 2009
Monday, November 9, 2009
Wednesday, October 28, 2009
Tuesday, October 20, 2009
Tuesday, October 13, 2009
Friday, October 2, 2009
Wednesday, September 30, 2009
there, but it was probably the scariest thing that I have ever
experienced. I was getting ready to leave for a CFF event and
wouldn't have been there if it had happened 10 minutes later. It
probably lasted about a minute, though it is hard to tell. The worst
part was when it was over his lips were blue and he was
nonresponsive. He just laid there with his eyes open but he would
respond to anything. I called 911 and then my friend Tasha. The fire
truck got there rather quickly and Gess finally started to be somewhat
responsive. He was really confused and kept asking me what happened.
They made sure he was stable, gave him o2 and called for an
ambulance. It seemed to take forever for them to get there and get us
to the ER.
The ER doctors think that it was caused by demoral. They also said
that meropenem (one of the abx he is currently on) can cause
seizures. They took blood and urine to measure the demoral
metabolites in his system, but we won't have those results for awhile.
The ER sent him home, though I would have prefered for them to admit
him. I did have the ER doctor consult with the pulmonary doctor on
call (who happens to be the director of the CF clinic) and she agreed
that it was fine for him to come home. We are staying at our friends'
house tonight so that I have back up in case something else happens.
I'm freaked out and scared that it is going to happen again, and worse
that I won't be there when it does. I called Gess's dad who
immediately booked a plane ticket and will be here at 3:00 pm
tomorrow. There really isn't anything that he can do, but I will be
glad to have him. Gess was mad that I told him to come, but I didn't
know what else to do.
I keep playing the last few days in my mind to see if there was
something that I missed or something that I should have done that
might have prevented this. I did not want him to get discharged from
the hospital yesterday. We actually got in an argument about it. I
just felt like he still needed to be there, but he wanted to come home.
I feel so much responsibility for watching over him and feel like
lately I have been failing.
Saturday, September 26, 2009
Monday, September 21, 2009
fluish. It seemed to be getting worse instead of better so he decided
to go in. I was still on narcotics from my surgery, so a friend took
him in. They admitted him and put him on tobra and meripereom. They
also gave him fluids and pain meds.
They ran a bunch of tests, including for the swine flu. In fact I am
struggling to type this because my iPhone does not like the gloves I
am required to wear as contact precaution.
Gess is looking a lot better and feeling better too. He has only
vomited once today and that was coughing induced.
I believe that if the flu test comes back negative he will be able to
come home tomorrow.
Wednesday, September 16, 2009
Tuesday, September 15, 2009
• Mindfulness meditation: It's been shown to decrease depression and anxiety while boosting empathy.Oprah.com: Try these meditation exercises
• Keeping a journal: Research suggests that reflective writing helps prevent compassion fatigue.
• A daily act of self-centering: Set an alarm for noon and take four deep breaths; or when you wash your hands, sink into the experience, feeling the sensation of the water on your skin while noting, "I am worthy of my own time."
• Staying connected to the outside world with at least a phone call every day. Better yet, get outside, even just to take a walk.
Tuesday, September 8, 2009
Interesting article about liver disease and CF. Also, I think that Gess was one of the patients in the study (though I could be wrong, he did several at UNC)
Gene Linked to Liver Disease in Cystic Fibrosis
TUESDAY, Sept. 8 -- A variant of a particular gene in people with cystic fibrosis greatly increases their chances of developing severe liver
About 3 percent to 5 percent of the 30,000 people in the United States with the condition will also develop a serious form of liver disease, including cirrhosis and portal hypertension, or high blood
Researchers from University of North Carolina at Chapel Hill analyzed nine variants in five genes previously implicated in cystic fibrosis liver disease. The study included 124 patients with cystic fibrosis liver disease and 843 patients without liver disease. A second study looked at a different group of 136 patients with cystic fibrosis liver disease and 1,088 without liver disease.
The researchers found that people who had the "SERPINA1 Z allele," or gene variation, had a five times greater chance of developing liver disease. The other variants did not increase the risk of liver disease.
About 2.2 percent of people with cystic fibrosis carry the SERPINA1 Z allele, according to the study published in the Sept. 9 issue of the Journal of the American Medical Association..
Screening for the gene variation could help identify those at risk of developing the liver disease, the researchers wrote.
"The identification of the SERPINA1 Z allele as the first marker for the development of severe liver disease in CF [cystic fibrosis] illustrates the possibility of identifying CF risk factors early in life, conceptually as a secondary component of neonatal screening after the diagnosis of CF is confirmed," researchers wrote.
Friday, September 4, 2009
Monday, August 31, 2009
Wednesday, August 26, 2009
Saturday, August 22, 2009
Wednesday, August 19, 2009
Thursday, August 6, 2009
Sunday, July 26, 2009
Tuesday, July 21, 2009
Friday, July 17, 2009
Cystic Fibrosis - Liposomal Tobramycin Receives Second Orphan Drug Designation Within WeeksMain Category: Cystic Fibrosis
Also Included In: Pharma Industry / Biotech Industry
Article Date: 17 Jul 2009 - 2:00 PDT
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An innovative treatment for infections of the respiratory tract in cystic fibrosis patients has received a second orphan drug designation in the US only weeks after a first designation was granted. The recent designation relates to Burkholderia cepacia pathogens that can cause lethal infections in cystic fibrosis patients. For Axentis Pharma AG of Zurich, Switzerland, both designations affirm the therapeutic potential of its product candidate Fluidosomes(TM)-tobramycin, whose unique microbiological profile sets it apart from other antibiotic formulations (including free tobramycin).
Axentis Pharma (Switzerland) announced that the Office of Orphan Products Development of the US Food and Drug Administration (FDA) has granted a second orphan drug designation to its lead product candidate Fluidosomes(TM)-tobramycin. This drug is a liposomal formulation of tobramycin and an innovative treatment for infections of the respiratory tract in patients with cystic fibrosis. Only three months ago, the FDA granted Fluidosomes(TM)-tobramycin orphan drug designation for the treatment of pulmonary infections caused by Pseudomonas aeruginosa. The newly granted second designation relates to pulmonary infections caused by Burkholderia cepacia (B. cepacia) pathogens.
Despite stringent infection control practices, B. cepacia infections still occur in cystic fibrosis patients and can lead to fatal sepsis. The cell envelopes of these especially virulent bacteria are impermeable to most antibiotics, which makes them particularly difficult to treat. Due to its unique mode of action, which allows the antibiotics to penetrate into the bacteria, Fluidosomes(TM)-tobramycin could become a particularly effective treatment for B. cepacia infections.
Prof. Dr. Miguel A Valvano, MD, Medical Advisor to Axentis Pharma, comments on the development: "Burkholderia cepacia is almost always multi-resistant to antibiotics and this, in conjunction with the poor prognosis of patients with B. cepacia infection, makes the treatment of these patients exceedingly complex. Tobramycin is in principle an effective antibiotic. The drug is however rather ineffective due to the impermeability of B. cepacia's cell envelope. In addition, B. cepacia - just like many other pathogens - has developed mechanisms to eliminate antibiotics once they have entered the cell. Fluidosomes(TM)-tobramycin seems to overcome these limitations by packing tobramycin into liposomes, which, by allowing effective penetration of the antibiotic into the bacterial cell, completely changes the microbiological profile of this antibiotic. Hence, Fluidosomes(TM)-tobramycin could be a totally new antibiotic formulation that addresses microbiological needs that no other antibiotic can."
What exactly happens when Fluidosomes(TM)-tobramycin encounters the bacterium is still not entirely clear, but pre-clinical data indicate a novel mode of action. Dr. Helmut Brunar, CEO of Axentis Pharma explains: "Once at the site of infection, tobramycin-containing liposomes seem to fuse with the cell membrane of the pathogen. In this way, the entire load of tobramycin contained in the Fluidosomes(TM) is released into the bacterial cell. Additionally, our data indicate that bacterial rescue mechanisms that pump tobramycin out of the cell are inhibited by the fusion process. The efficient delivery and maximum release of tobramycin into the bacterial cell together with inhibition of the clearance mechanism indicate that Fluidosomes(TM)-tobramycin has a highly efficient therapeutic effect."
About Axentis Pharma AG
Axentis Pharma is a respiratory specialty pharmaceutical company whose core competence is the combination of a fully patented, liposome-based drug delivery system with already established and well-characterized therapeutic agents. The company is using its platform delivery technology, named Fluidosomes(TM) technology, for the development of its lead product, an inhalable liposomal formulation of tobramycin. Axentis Pharma's lead product is designed to treat bacterial infections in the lungs.
About Fluidosomes(TM) technology
Axentis Pharma's Fluidosomes(TM) technology uses biocompatible lipids endogenous to the lung that are formulated into small liposomes. This nanocapsule platform offers wide-ranging potential for unmet medical needs, including chronic respiratory infections of the lung. In the case of Fluidosomes(TM)-tobramycin, the interaction between tobramycin and the microbial cell is triggered when the liposomes undergo a fusion process with the outer membrane of the bacterial cell wall. Tobramycin then penetrates into the inner cell compartment and triggers bacterial cell death.
Source: Axentis Pharma AG