Saturday, December 12, 2009

This Year's For me and you...

I just found a song that Paul dedicated to me on December 26, 2007, with the note "This year's for me and you..."

Thank you for your friendship Q.

Thursday, December 10, 2009

Goodbye Paul

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. it goes...


I didn't see it coming. I knew that you were sick and that were not doing well...but I never actually thought that you would die. You seemed invincible. I thought that you would get through this, maybe get new lungs...version Q.2 and that you would be around forever. It was wishful thinking, I know. But I hoped.

You were one of the first people that I "met" on the board. I don't remember how we started talking outside of the group, but it just seemed right and seemed like we were destined to be friend. I remember all of the talks, some very serious, and others very silly. I know that we talked about relationships a lot. Some of the discussions were difficult...talking about the realities of CF. In some times I think that I looked at you as what might happen to Gess in the future. And sometimes that scared me, but it was also some way comforting.

I feel like you were my passport into the community in a lot of ways--like you "vouched" for me and said, "she's okay, even though she is not a cystic." I felt at home in the community...more like I belonged than I have ever felt before. More accepted and more cared for...even though I don't share your mutations. So I thank you for bringing me into that community and helping me stay there. It has meant so much to me...I can't even put that into words.

You also got me writing again. Our blogs on Yahoo 360...blogs that I lost. but ones that I wrote rather personal stuff upon, knowing that only you and a few others would read them. Blogs were I really started to open up and address some of the demons in my past. This was the start of the work that has lead me to where I am now...dealing much more capably with my family and with myself. I also want to write. Someday you will be able to find a book with my name on it on the shelves of a book store. And this is because of you. You started the process...and now I will take it and finish is.

We talked about a lot. Hockey. Music. Meditation. Cycling. Books. And more. I guess it really didn't matter the subject...there was just a comfort in talking. You were my friend and I liked spending time with you--even it was all virtual.

And then we did get to meet...Heartland Cafe. Sorry we were late...never stay in the suburbs of Chicago...not worth it! I was nervous about our meeting. I didn't know if we would "click" in real life or if it would be weird. I didn't know how Gess would respond. And I didn't even know that Tiffany would be there. But once I got there, it was great. You looked great. You looked happy and healthy. Much better than I had expected considering how I had heard you were doing. I enjoyed our brunch a lot and I wished that we could spend more time together. had company, so we went our separate ways. I wish that we have taken a picture. I had my camera and my iPhone, so I had no excuse.

It was hard to say goodbye, but we were back chatting the next day and things were fine. Friends. Laughing, sharing, commiserating. I think that a lot of the reason that we got along so well is because we are so alike. We both live in our heads a lot. We think, think, and think. Over-thinking everything. Dwelling. Analyzing. Questioning. I think that we were both a little melancholy--ok, maybe a lot. But it worked. With you I was sad Lisa at times. Processing through a lot of the stuff that I have, in part because of my crazy family life, in part because of my low self-esteem, and in part because of the way this disease is eating me up inside. You thought a lot about how CF affects geneotypicals involved in relationships and so I felt safe telling you my struggles. Talking through some of those things has really helped me...some of it scared the crap out of me...but it is the life I have and it was nice to be able to compare notes with you about it. I will definitely miss that.

I know that we hadn't talked a lot recently, things have been crazy in my life and I think that you sensed that and gave me some distance and I was so wrapped up in everything that I didn't reach out more. But I can't think about that now. I know that you knew I loved you and I know that you loved me. More conversations certainly would have been nice...but we will have to save those for another time.

I will never forget you. Last night I was reading a book and though "I can't wait to tell Q about this." And then reality hit that I couldn't tell you. I wonder how long that will long you will be the first person that I think of when something happens. The reality of the situation sucks. I want to tell you about this book and listen to your analysis of it. We never talked about the book we were reading sort of got pushed to the side with the entire pepe drama. But I still have it on my shelf. And every time I see it I will think of you.

I thank you for your friendship, your love, you insight, and your humor. I listen to some of your music and can't help but smile. You were so wonderful and you will be so sorely missed.

I hope that we meet again and can have those conversations. And that bike ride. Until then, I will hold on to the fond memories and hope for those times to come.

Tonight I sing to you "I'll Fly Away (Cystic)" and "Pepe's Song." I don't want to let you go, but I know that it is go my dear away to that place where joy will never end...

With much love,

sad lisa

Tuesday, December 8, 2009

Sad Lisa

Sad Lisa by Cat Stevens (Click HERE to hear)

She hangs her head and cries in my shirt,
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.

I miss you Q.

Friday, November 20, 2009

Another rough week

It has been another rough week. We did receive confirmation that Gessner (and by proxy me) had H1N1. Luckily, he seemed to get through that okay, but now has a cold or something else going on. The biggest issue that is going on is a mental/emotional battle that he is facing. He is tired of being sick and it has been really hard. I don't know how to help and am finding myself incredibly frustrated in this whole thing. I guess it is related to his frustration, but he is not doing much by way of treatment right now. He is supposed to be on IV cefaphime and inhaled Tobi and he is not doing either. I actually got really angry about this yesterday and yelled about it when he woke me up in the middle of the night. He doesn't have an answer as to why he is doing this and it is frustrating. I want him to be healthy--not just for himself, but for me too. This whole year has been so draining on both of us and now it is getting worse. I am not sure when he is going to come out of this or if he is or what to do. Simply put, it is incredibly frustrating. I know that he is frustrated and I certainly am as well.

Last weekend the brother of one of my closest friends was killed in a car accident. It is a difficult situation because of a strained relationship and family drama. So, I have been worried about her.

Then today I got a message from my aunt saying that my dad was back in the hospital and not doing well. He is dehydrated and has lost too much weight. She said in her message that it wasn't looking very good (in case we wanted to come). So, I came over to Yakima tonight. I didn't let Gess come with me because he is too sick. He doesn't need to be in the hospital to get exposed to more germs, and really my dad doesn't need to be exposed to the germs that Gess has. It was hard to leave knowing that Gess is struggling, but I felt like I needed to come here and Gess supported that decision.

Apparently my dad is fighting and says that he will walk out of the hospital, so that is a good sign. He was able to eat a little today and they are hydrating him. They are going to put in a feeding tube on Monday and he will have his last radiation treatment then as well. If he can gain 5 pounds, he will be able to get his chemo treatment on Wednesday. I am not sure what else or if any of that will change. I got into town too late to go by the hospital, so I will have to wait until the morning to get more information.

My plan is to do family stuff here tomorrow (my mother is also depressed, so I need to talk to her) and then head back to Seattle on Sunday morning. We are supposed to have a big group photo shoot with friends, which I am looking forward to. Then on Monday, I will go to the funeral to support my friend and then come back to Yakima if necessary. **sigh** I'm tired just thinking about all of this!

Tuesday, November 10, 2009

Worried about the future

I am trying to stave off a panic attack and hoping that blogging might help. Gess's health just isn't getting better and honestly, it is freaking me out. During one of his recent hospitalizations Gessner's dad called and asked us to move to Florida. He said that we could live with him and that I could take time off, or practice law, or go to school, or whatever I want to do and the same with Gess. I don't want to have to live with his dad, certainly, but I will admit that the thought of being taken care of is so appealing.

We LOVE Seattle. I LOVE Seattle. And I do NOT want to move. I have GREAT friends and they have been really supportive during all of this. But today our "best" friends told us that they are going to Austrailia for 6 months. Not that 6 months is long, but it will be hard...when Gess heard he told me to start looking at being licensed in Florida.

This whole thing scares me. I don't want to leave my friends and my life here in Seattle. But, I also know that I need to do what will be best for Gess and his health. I am afraid that this is going to have serious effects on my career and I am afraid of uprooting my life, moving to Florida, and being left alone there eventually. I feel like CF has kidnapped my life and is the primary driving factor in it right now, and I don't know how to get it back!

Monday, November 9, 2009

An update

I know it has been a while...basically I am getting tired of complaining about CF and the toll it is taking on us this year. But, it keeps going and going and going.

First, I got what the doctors presume is the swine flu. I was so upset when I heard. I cried and cried and felt so bad, not wanting to get Gess sick. I have done everything that they tell you to do to keep from getting sick, but to no avail. We, of course, called the clinic and they put Gess on Tamiflu proactively. We called my MD's office and their response was that Gess should be on tamiflu, but that I should just wait it out. I initially accepted that answer, but at the urging of some facebook friends, decided to talk to my ND. I just told him my symptoms and he prescribed tamiflu right away and also mailed me some Chinese herbal tea. I love my ND! He is so reasonable...he uses traditional (western) and alternative medicines and has made such a positive difference in my health.

Anyway...Gess took care of me for a couple of days...bringing me food and checking on me. We kept a reasonable distance and sanitized everything I touch...but a couple of days later, Gess started feeling fluish too. He was on tamiflu, but yesterday woke up with a swollen face. We called the pulmonary fellow on call (not sure why things always happen on the weekend!) and he told us to take Gess into the ER. The conclusion is that he was having a (very) delayed allergic reaction to the tamiflu. They took a swab to test for the flu, but I am not sure if it will have been too late or not, so I doubt that we will ever know if we "officially" had H1N1. The ER doctor wanted to admit Gess, but the pulmonary fellow said no because he might be exposed to the flu if he didn't already have it. I have a feeling that the hospital is inevitable, so I really wish that they would have just admitted him, but what do I know? They did put him on another anti-viral, again, presuming that he does have the swine flu.

Today Gess contacted the clinic and they put him on IV antibiotics. He is pissed about it. He is also having lung pain, so is on pain meds again.

He is so frustrated with his health right now and I can see it in his mood. It is hard to watch and I don't know what to do. And I miss my husband and want him to come back. This "new" guy is hard and negative. CF sucks!

As for me, I am starting to feel better. No fevers for a few days and the biggest issue I have is a cough. Gess keeps commenting on how bad it sounds ("You sound worse than me!"), but it is getting better. I have more energy today, so I am happy about that. I am hoping for a break from being sick and hoping that Gess starts to feel better soon.

Wednesday, October 28, 2009

Update on my dad and a visit to Yakima

It has been just under 2 months since my dad was diagnosed with cancer. I really can't believe that it has only been that seems like several months have passed. I think that is just because so much drama has happened here. Anyway, I decided that since things have calmed down just a bit at home, I decided to make a quick trip over to Yakima to see my dad and take him to his treatment.

He is doing radiation five days a week and then chemo on Wednesdays, so I came for a chemo day. I came over last night since he needed to be at the center at 8:30 am. The ride was beautiful, I forgot how beautiful Yakima can be. I think that part of it is that I have such negative emotions attached to this place. But if I look at it more objectively, it can actually be a rather beautiful place...the city itself not so much, but the drive up here is pretty amazing.

Last night I had dinner with an old friend, and had a really nice time. I miss chatting with her. It was so nice to see her, looking happy and healthy. She was given a "terminal" cancer diagnosis in 1997. So glad that they were wrong!!

I didn't sleep well, maybe it was because of worrying about being in Yakima, or maybe just my insomnia hanging this morning came a bit too early. Thankfully I did have time to find a Starbucks (and the very handy new Starbucks iPhone app that located the nearest stores for me).

I picked my dad up and wasn't quite sure what to expect. He is now on full-time O2 (2 liters). I think that the biggest difference was the weight he has lost...29 pounds since I last saw in him September, 29 pounds that he didn't have to lose to begin with. Other than that, he looks pretty good. I think that he is losing some of his hair, but he is 69 years old, so it doesn't look necessarily odd or out of place.

First stop was blood work, then in to see the oncologist. My dad was his normal joking self when the nurse came in. She was a new nurse to him, so he started out with his joke routine. I nearly fell out of my chair when I heard the word "penis" come out of his mouth...but fortunately the nurse didn't seem to mind or be offended :)

The oncologist told dad that he needed to gain some weight (told him that he looked like he could be in a holocaust movie). I didn't particularly like this doctor. He didn't introduce himself to me or ask who I was. He gave us very little information and I really didn't get to ask any questions. He even prescribed a new medication but didn't tell us. He just handed it to the nurse for her to get it. I don't know if this is normal protocol for this doctor or what, but I know that if I were there regularly I would either get a new doctor or have some words :)

Anyway...after that unhelpful exercise we went into the infusion room. This was the first time that I have actually been in one of those rooms. I have caught a glimpse of the infusion room at the Polyclinic several times as went to my allergist, but have never been in one. So, that was an experience. I also realized when I got inside that it was likely the room where my aunt died a couple of years ago. She was diagnosed with cancer and went in for her first chemo treatment and then died during that first treatment. I am not sure why it never occurred to me before I went there.

Dad handled the chemo procedure well. This was his 5th chemo treatment, so he has been down the road before. It was just obvious from some of the other patients that they didn't tolerate it as well. Dad's sister came for a bit and we chatted a bit, and then she went to help Dad's wife set up a new bed for Dad (he can't sleep in his regular bed because of his "wound" from the radiation). Dad slept a bit during, and I did a little knitting. The treatment last about 4 hours total I think. After his infusion was completed, the nurse came by and changed his PICC dressing.

Then over to the radiation suite. Luckily this center has everything in the same building...the doctor's offices, the infusion suites, the radiation area, etc. It is decorated like a lodge with "log-esque" furniture and fake creek outside. A bit cheesy to me, but nice that they really tried to make it a comfortable place for the patients. It was busy and there were many "sick" people there, but it definitely didn't have that sterile "sick" feel. It was quiet and a bit peaceful. Which I think is really great. I wish more medical facilities paid attention to aesthetics. I know that medicine is the primary purpose, but other things are important for healing too.

Anyway...we had quite awhile to wait before the radiation treatment, so my dad told me a bunch of stories. We had been estranged for quite a long time (he was an alcoholic and left my mom when I was 7 and then he basically disappeared until I was 17. I tried to let him in, but couldn't deal with it, so haven't had much contact with him. Some letters, a couple of visits, but not much. But I think that I have finally let go of a lot of that stuff). So, he was telling me a lot of stories that I have never heard. Fortunately this time the stories were not the hard to hear type.

Finally he went to radiation and I picked up his prescription at the pharmacy. The radiation is really quick and so we were able to go home. He was tired, but I think that he didn't want to lay down because I was there. I talked for a bit, but then told him that I needed to go so that he can get some rest. I will go back by in the morning before I head out of town.

All-in-all that was a pretty good visit. But I am definitely looking forward to going back to Seattle tomorrow! Had a good visit with my grandmother too (but that is probably for another blog...I need to get to sleep!).

Tuesday, October 20, 2009

Is it okay... not be okay? I feel like everyone in my life is worried about me and I appreciate that, but frankly I am tired of talking about what is going on and tired of convincing people that I am okay. In fact, I really don't think that I am okay, but somehow that seems "okay." (ironic I know). I am tired and worried and don't know what we are going to do in the long run. I am tired. Particularly tired of working so hard to be okay. I want to just be and let myself be a bit broken for right now. **sigh**

Tuesday, October 13, 2009

Can't believe we are here again

After the seizure on 29th things calmed down. Gess was not admitted to the hospital, so we went home. The first couple of days were hard because we were both so anxious. But, we got through them and to my astonishment, Gess decided to stay in bed, get a lot of rest, and not rush back to work. He had some issues with depression and anxiety, but that will be for another blog entry. He started to feel better. We went to clinic and the doctors didn't have much to say. They told him to stop the IV antibiotics because he suspected that one of the drugs may have contributed to the seizure. His blood pressure was high, but the doctor thought that was caused by the remaining edema, so he prescribed a diuretic. He continued to rest, started to feel better and was anxious to go back to work. He still took it easy, going in for an hour or so on Friday.

Yesterday we went to a diabetes appointment in the morning. His blood pressure was down and he was generally feeling good. He went to work with no problems. When he got home we had dinner and watched some TV. Everything was fine and he was feeling fine. Until 10:00 pm. Suddenly one side of his body went numb and then there was pain in the back of his neck. Then he started coughing up blood. About a cup, bright red.

We knew that meant we needed to go to the hospital so we went upstairs and he started to feel worse. He reported a very sharp pain in his right lung, causing him to tense up and double over. He said call "911." So for the second time in his life....but also the second time in a couple of weeks...I dialed those numbers and within minutes the room was filled with firefighters. They checked him out and Gess started to feel someone better. The numbness was gone, but the whole thing was so strange, the firefighters urged him to go to the ER, and he agreed. Thankfully I was able to transport him and we didn't have to wait for an ambulance. The container with blood in it and his shortness of breath got him right into triage and allowed us to bypass the waiting room. The ER rooms were full, so we got a bed in the hallway. Tests, blood draws, xrays. Pain "spasms" continued and the doctors wanted to admit. It was after 4:00 am by this time, so I went home to try to get some sleep.

They admitted him to the ICU because of the weird chest pain and the bleeding. I slept, but not much and not well.

Today has been uneventful so far. He has slept on and off. No more numbness, but the pain keeps coming back. It is not predictable in nature at all. The episodes may be 2 minutes apart or 2 hours apart.

One of the doctors has a theory about what is causing this and it has to do with the chest wall affixing itself to the lining of the lung (or something of that nature). They are going to do a CT Scan to test the theory. That will be tomorrow. For now they are getting ready to move him out of ICU and down to the medicine floor. I am glad that he is not "sick enough" to need the ICU, but will miss the great nurses here. It makes his life much easier when his nurse responses to calls quickly and comes in to check on him regularly. Life on the floor is not as good.

The plan for now is to hold him at least 24 more hours and see how he progresses and what the CT shows (if anything).

We are both frustrated with the events. He is freaked out about work and I am freaked out that I am unemployed and not able to provide so that he can just stop working if he wants to. Of course, he doesn't want to quit working. He likes to work. He was talking about short-term disability through work, but the coverage is only 60% pay so he said he wouldn't do it. If I were working, it might be different, so I feel guilty. I need to find a job. But, if I do find a job, I won't be able to do this hospital every other week thing either. So, really it is a scary position that we are in.

Honestly he doesn't seem sick enough to need to be on disability. But, at the same time, he keeps having these strange things happen that land him in the hospital. They all seem unrelated. His lung functions aren't affected. They have basically been the same for the past 5 years. This doesn't seem to be infection related. He feels fine and just finished a course of abx. So, it is actually a very frustrating course of events. He will literally go from feeling good to being in the ICU in a matter of hours. There isn't a progression. It isn't predictable. It is nothing and then panic emergency. And then back to nothing again. It is exhausting.

Friday, October 2, 2009

How to ask for help

When Gess is sick, several people ask "Is there anything I can do?" and my standard response is "Thanks, but we are fine." Mostly because I do feel "fine" and don't know what to ask for. But as things have changed, I know that I probably need more help, but I am not sure what to ask for. I am so used to doing this all by myself, it is just hard to envision having other people involved. We have started to have one couple more involved. They will take Gess to the hospital and they watch Beauty. But, there are other people that want to help and I honestly just don't know what I can even ask for. It is hard for me to ask for help, period. Even more so when I don't know what to say. I have the best friends and they really do want to help, and I know that I need to let them help. I just have to figure out how.

Wednesday, September 30, 2009

A better day

Today has been a better day. No more seizures thankfully. Last night we "slept" at our friends' house. Gess seemed to get a fair amount of sleep, but I had a hard time sleeping. I kept listening to him breathe. Every little twitch or movement jolted me awake. For a couple of hours I just sat there not even closing my eyes because all I could "see" was the seizure. I am not sure why it affected me so much, but it was one of the more disturbing things that I have seen. I think that part of it is the unknown and then also the non-responsive state that he was in. Physical things are one thing, but more "mental" things are another.

We came home around 10:00 ish this morning and I did a bit at home. I was exhausted so we took a nap. The weather has changed so we curled up and cuddled with Beauty. We were both able to get some sleep and stayed in bed for most of the day. When I woke up I felt a bit better, I think that the exhaustion has just been wearing on me.

This evening has been equally uneventful. Chinese delivery. DVR-ed TV. The three of us scrunched together on the couch. I did a little homework, a little shopping, facebook.

Gess's dad decided to come out next week. He is having some issues with the condo he is closing on soon.

So, here's hoping for a low key few days and then a good visit with Gess's dad.


Gessner had a seizure tonight. Luckily he was in bed and I was right
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

Feeling Broken

Things are rough right now. Gess is in the hospital and I just feel like I am at the end of my rope. There isn't anything specific that is going on; in the grand scheme of "CF stuff" this seems rather minor, but it has just hit me. I think that it is just the combo of everything that is going on. I hate when I feel like this because I feel so utterly inadequate. The words "I hate myself" pop into my head too many times a day and they are getting harder to push away. Today I have done basically nothing. I just feel like I can't possibly move to do much. I have SO much to do and no excuse for not doing it. Yet, I just can't seem to make myself act. I am tired, no, I am exhausted. I am broken. Of course, Gess needs me and so I feel guilty for being such a wreck. I guess I will put on my big girl pants tomorrow, suck it up, and power through. Or at least I hope I will be able to.

Monday, September 21, 2009

In the hospital

Gess is in the hospital again. He hasn't been feeling well...sort of
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

Taking Care

My post about Compassion Fatigue has me thinking about things that I can do to take care of myself.  So, I am going to have a series of posts about this.  

One good way for me to relax is to read a good book.  I love books...get me in a bookstore (or on and you should hide my wallet!  When I was a kid, my siblings and I would go to the library every week during the summer to participate in their summer reading programs.  My sister and I would get huge stacks of books each week and then go home and devour them.  Some of them were silly books, but they were books nonetheless.  My love of reading continued through high school and college.  When I got to law school, however, I found that I stopped reading for pleasure. I think that it was because I was reading so much for class.  Occasionally I would get a "beach read" type book and more than once I found myself reading through the night instead of studying.

After law school I started to read again and it has been a good source of relaxation for me.  I generally have several books going at once and read a wide variety of book.  On top of this, I formed a book club.  That has been great.  We meet once a month (roughly) and rotate who hosts.  We have dinner, talk, laugh, and generally have a great time.

I also carry a book with me most places and that certainly comes in handy when we unexpectedly end up in the hospital!  I read all of Water for Elephants by Sara Gruen during one ER visit.

Tuesday, September 15, 2009

Compassion Fatigue

I was reading an article in Oprah magazine (there are good articles in it, I swear!) about Compassion Fatigue that I found very interesting.  Basically, it is the term that doctors have given to what happens to some people who are chronic caregivers.  It is different from burn out and has similar symptoms to PTSD.  In fact, another name for it is Secondary Traumatic Stress Disorder.  My reaction when I read this was "of course this happens."  I have experienced it myself (and think that I am finally coming out of a bout right now) and have seen other people experience it.  That being said, there was something that struck me about having a label to give to it and some sort of "official" recognition that this exists.

One thing that I have found many caregivers, including myself, experience is guilt.  I sometimes feel guilty because I am worn out, stressed, exhausted, etc.  As I type this, I realize how silly that sounds, but it is something that I do experience.  Much more frequently than I would like to admit.  

So, what can I do with this new "awareness"?  I guess it is just a reminder of what I already know--I need to make it a point to take care of myself too.  CF (and other stressors) are difficult.  There is no way of getting around that.  And in order to do my best at helping Gess through these things, I need to be healthy and sane.

The question is, how to do this?  As a perpetual "doer" I do find it difficult at times to identify my needs and know of things that I can do to "take care" of myself.  I used to be so bad that Gess would draw me a bath, light candles, and then literally lock me in the bathroom with instructions to relax until he let me out! (I had this habit of taking baths to relax, only to be ready to get out by the time the tub filled all the way!).

The Oprah article has the following recommendations:

• Mindfulness meditation: It's been shown to decrease depression and anxiety while boosting 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.

• And don't be afraid to ask for help.

I am going to make it a point to try to find new ways to take care of myself and to actually practice  the ones that I know work.  I also encourage all of you out there in blogger-land to do the same and let me know what you find that works!!

Oh, I also found a Compassion Fatigue Awareness Project--looks like a good resource, so I will check it out!

Tuesday, September 8, 2009

Gene Linked to Liver Disease in Cystic Fibrosis

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 disease, new research shows.

Cystic fibrosis is an inherited disorder that can lead to deadly lung infections and digestive problems.

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 pressure caused by obstruction in the liver, according to the Cystic Fibrosis Foundation.

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


I went to Yakima to be with my dad on Monday evening. We got into town late, so didn't go to the hospital immediately. Instead, we went to the hotel and thanks to Ambien I slept pretty well. We went to the hospital early on Tuesday morning. Surprisingly, it went pretty well with seeing my dad. I guess I just left the "other" stuff at the door and dealt with the matter at hand. He actually looked pretty good and was in good spirits. His left arm is extremely swollen. He has a large blood clot in that arm. The doctors think that is was caused by the mass in his chest/lungs pushing against the vessel. They started him on a heprin drip to prevent more clots from forming and then started him on coumadin.

They did a bronchoscopy on Monday and took some samples from his enlarged lympnodes. And then we waited. And waited and waited. The pulmonologist told us that he is sure that the mass is cancer, but that he doesn't know what type. Based on the CT Scan it is unclear whether the mass is inside the lungs and jutting out or if it is on the outside near the lungs. His lung functions are pretty good, considering he has smoked for 60 years. His FEV1 was at 59%. His O2 saturation levels were low, so they kept him on 2 liters of 02 (on which he satted at 93-96%). I am not sure if this means that he will go home on supplemental 02.

I spend most of Tuesday and Wednesday at the hospital with him. We talked a lot. My aunt that I rarely see was also there, so we talked too. He told a lot of stories about when he was younger and when I was little. Many of those stories were hard to hear. They were stories about him being drunk and me being a little girl. Stories that are painful and that I would rather forget. So. I am carrying those with me right now and not quite sure what to do with them.

When we left the hospital on Wednesday evening the doctors thought that they would discharge him on Thursday, but subsequently they decided that they would keep him until they got the biopsy results back. Today (Friday) the doctor said that the sample taken during the bronch was not large enough, so they had to take another sample. I think that sample was taken today, but the results won't be back until Tuesday or Thursday, which means that he will be spending the long weekend in the hospital.

So far I am okay with everything...but am not sure what will come. I had pretty successfully shut out some of the issues with him from the past, but this is forcing them back into view again. At this point, I really do feel like I am "done" with those issues, as "done" as you can be. They happened, and there is nothing that can be done to change them. He is at least trying to change and be a different person, which I do respect. So, maybe that will be it and I will just deal with the medical issues at hand. I don't know for sure.

When we came home we brought my 18 year old brother home with us for a visit. There is a lot going on with him right now, and I don't feel like getting into the details. But suffice it to say that the last couple of days have been trying emotionally for me.

I am exhausted and am ready for a break and am going to try to get one this weekend even if it means kicking the boys out of the house!

Monday, August 31, 2009

Worried about seeing my father tomorrow

My father is in the hospital and is not doing well.  My sister sent me a text this evening and given the description, I knew that I needed to come.  Gess also decided to call and the first thing that he said after hanging up is "he's dying."  Gess was crying (I am still not sure why--he has probably seen my father 3 times ever).  Apparently my dad did ask for me to come, so I dropped what I was doing (which was making peach jam), and made the 3 hour trip.  Gess came with me (against my protests).

You'd think that going to the hospital would be nothing big for me now, specifically since we have practically lived at one this year, but I am worried about this.  For one, I only have bad memories associated with this hospital.  Basically, something "bad" happened with my mother here (and she doesn't know that I know about it) and so just being in the building triggers something with me.  Second, I haven't seen my dad in probably 7 years.  I have exchanged letters with him a bit, but haven't seen him face-t0-face since my last year of law school.  The reasoning behind this is pretty complex...or maybe not complex but difficult for me.  Long story short, my dad was not a great guy (abusive alcoholic) and left my mother (pregnant with three other children all under the age of 7) when I was 7.  I hardly ever saw him in the next 10 years.  I had assumed that he moved away, but found out that he in fact lived in the same little town that I lived in.  He just never cared to see us.  So, that hasn't sat well with me.  

He came back around just as I was graduating from high school and I had a semi-relationship with him during college (mostly at the urging of Gessner).  But he really just made excuses about what he had done, etc.).  So, finally I had enough and just stopped responding to his letters (letters have been our main form of communication).

About a year and a half ago, I wrote him again, worried that he would get sick and then I would regret not trying harder.  So, we again exchanged letters.  He seemed better this time.  I also found out that he was sick...diagnosed with COPD (which is no surprise since he has smoked since he was like 10).  There was an issue that came up because I didn't feel comfortable going to a family reunion with him, so I pretty much stopped communicating with him again.  I was too overwhelmed with what was going on with Gess and some other stuff and at the advice of my doctor and therapist, I really needed to cut out people that were "energy drainers" etc.  He was definitely on that list, so I really haven't had much contact with his for the past year of so.  

Today there was no question that I needed to come to see him even with all of this.  I am not sure why, but my gut told me  I needed to, so I followed.  I am a bit worried about the toll this is going to take on me.  My dad is old.  He will be 69 in just a few days.  He smokes and also drank for many years.  I am sure that his liver is bad, as well as his lungs (which rubs me the wrong way considering Gess's health at the age of 32 not because of stupid lifestyle choices, but because of CF...but that's for another day).  

He has a wife that I think I met once.  And a daughter that he adopted (which is a very touchy spot with me since he abandoned us and yet voluntarily took on someone else) and I imagine she might be there.  I haven't been around and I don't know if that was the right certain seemed like the right choice and I don't know where I will fit in tomorrow.  

I don't know exactly what is going on, though the explanation given by both my sister (to me) and my dad (to Gess) sounds like it could be a terminal situation.  

Not sure what tomorrow will bring, but I am going to try to keep my wits about me and just be there if he needs me (regardless of the past and all of those issues that cannot be changed).  At the same time, I will not accept anyone attempting to place blame or guilt on me for the past (not that I expect that to happen, but if it does, I will stand up for myself).  And above all, I have to try to keep myself from getting "sucked" into any drama that is just going to be stress causing.

For now, Ambien take me away....

Wednesday, August 26, 2009


Man, I feel like I am beating the proverbial dead horse, but I want to have kids. I am not sure why this is hitting me so much right now. It might be because I have been around kids a bit lately (I even had a 6 year old explain to me how to have kids!), but it also might be my birthday coming up (I will be 32 *gasp* in a couple of weeks).

I am planning to talk to Gess again about the issue, but those talks are always so emotionally draining (for both of us). He says that he wants kids, but feels like it would be irresponsible because of his CF. I do understand the argument and can agree with it on an intellectual level sometimes. But there is a part of me--a huge part of me--that just cannot accept that I "can't" have kids. I might feel differently if I were the one with CF. But I'm not, so here I am, wondering what to do. It seems so ironic that I have done everything "right" in terms of what society says you are "supposed" to do for starting a family: I went to college and graduated, and then married a great man that I love, and then went to law school and worked on my career so that I can have a good job and financially care for a family, waited until I was older and more mature, etc., etc., But here I am, only 32 and the possibility isn't looking good. I feel like an adolescent that just wants to stomp her feet and scream "It's not fair!" at the top of my lungs.

I wish there was a way that Gess and I could be on the same page about this, but really I don't think that it will happen. And that really hurts. I sometimes envision myself as a young-ish widow, all alone with no kids and no family (since my family is not supportive). That seems like such a bleak and lonely future.

I know that there isn't an answer. I also know that a lot of people have strong feelings about the whole CF-kids issue. So, I am not wanting to start any sort of debate. Just trying to get out my feelings, so hopefully I can move on to an "I'm okay" phase.

Saturday, August 22, 2009

Physical Limitations

When I met Gess he was very active.  Really I think that he was so determined to not let CF define who he is, that he pushed himself a lot to be active.  He did martial arts as a kid and he still does demonstrations (which unfortunately ends up with broken hands sometimes).  We used to hike a lot and do a lot.  And I love to be active.  I have a long list of things that I want to do and a lot of them involve pretty intense physical activity. is the dilemma--Gess has not been "up" for doing much physical activity right now.  I totally understand--he has been so sick and the bleeding, etc.  But I don't know how to deal with this on a day-to-day basis.  For now I have just been casually mentioning things and seeing how he responds.  Like a group of friends was going on a pretty easy 4-mile hike today and so I mentioned it and he said that he would like to go.  So last night I asked if he thought that he would still want to go and he said that he had bled that night, so he wasn't sure.  So...we didn't go.  It is fine that we didn't, I'm not complaining about that.  I am just not sure how we should deal with this on an ongoing basis.  We are supposed to go kayaking next weekend.  Gess set it up with a friend of his...but given his health and the recent track record, I don't know if we will be going or not. 

I guess what I really need to do is just have a talk with Gessner about this.  It will not be a fun conversation....but it is something that we need to do.  We just need to have a discussion about where he is and what he feels capable of doing.  Going on as if everything is the same as it used to be is not doing either of any favors.  It probably makes him feel badly when he has to cancel because he isn't up for it and it makes me frustrated that we are canceling plans, etc.  

I also don't know where is leaves me. I am an active person and want to continue to be.  If my shins ever get better I will be training for triathlons again.  But is this going to hurt Gess?  Is he going to feel like I am leaving him behind?  

Wednesday, August 19, 2009

Been a very bad blogger...

There hasn't been a lot going on lately.  Gess seems to be feeling okay.  He has had some bleeding, but nothing major.  No more sudafed or demoral, so no more loopy days.  I am struggling to write anything else about his health.  I guess it is because I am really tired of CF.  I have to deal with it (obviously), but I don't have to write about it :)  It is hard having a husband with CF and sometimes it is just exhausting. 

Thursday, August 6, 2009

Vancouver and Chicago

I posted the details and photos from my trips on my other Blog.

Family Blues

I am so frustrated with family right now. Our society values family and commitment to family so much. So when you feel like breaking from that expectation, it feels like you are committing some cardinal sin. My family has been a continual source of stress and drama for me. I recently told my sister that I had to limit my contact with her and step back. This was really difficult to do, but was on the advice of my doctor and therapist. Basically I need to try to minimize the amount of interaction I have with those people that are "energy suckers." I am trying to recover from all of the stress. My body is telling me that if I don't do it now, something very bad is going to happen. Even knowing this, it is so hard to do. I can't even explain the knot in my stomach when I told my sister that I had to limit my contact. The other thing the really irks me is that my sister told me not to long ago that she knows how "easily" I get stressed out. WTF!! It's not like I am stressing over a a chipped nail! My life is full of big, stressful things. It pisses me off that my family would view me as just "easily stressed," particularly when I feel like I have done pretty well in the face of everything. I mean, maybe I am giving myself too much credit, but I think that I have done a pretty good job of keeping my sanity in the face of a lot of crap.

I have my niece with me this week (my sister's daughter), so the family situation has come up. I feel so badly for her. My sister is a mess (and I am not exaggerating) and I really worry about my niece. My sister's husband is a total loser. She recently left him after he hit her and my niece, but she is now back with him, insisting that he has changed. I seriously doubt it. I just hope that she can keep up in school and get the heck out of there as soon as she turns 18. Ughh...

On top of this, we are having major issues with Gess's family right now--particularly with his mother, which is just making things difficult. Why she needs to make an issue right now when Gess has been so sick, I don't know. Basically, over the years his mother has said many, many inappropriate things and has just not dealt with Gess very well at all. He has been pretty tolerant and forgiving, chalking it up to her just being out of touch or something. I had enough of it after the last comment that she made to me about being glad that we deal with the CF so that she can have her own life. Gess talked to her about it and she got mad at him. Seriously! Then things have just went downhill from there.

Apparently while I was out of town, Gess talked to his mom and these issues came up and he had a long, difficult talk with her. Basically he told her how the things that she did when he was a kid were so hurtful (like when he had to take care of all of his own medical stuff and she appeared like she didn't "care" about him being sick--his words). Gess was hopefully that it would move toward a better relationship, but it seems like it has done the opposite. Apparently he invited her to "talk" to him about the stuff via letters and she has done so; we get something in the mail from her almost every day. He kept them all and didn't open them at first. Instead, he brought them to his therapist's office to read them there, as a "safe" place. He didn't tell me much about what was in them, except that they were what he expected, and not in a good way. Also, in one she made a statement that "Lisa settled for you, even knowing you have CF." I cannot wrap my head around that statement. I can't think of any possible scenario in which a mother would tell her child that someone else "settled" by being with him. And I just can't imagine how that would feel.

As much as I am troubled by my own mother, there is still a part of me that wants acceptance and love from her. So, to have your mother make such a derogatory statement, in such a clear and direct manner must be devastating. It breaks my heart that he has to be dealing with this on top of everything else. I think that it shows amazing strength and character for him to try to communicate with her and I am so saddened that she responds like this. I really don't know what her issue is, but I just want to scream, and tell her to stop being so selfish and be a mother to her son. I know that she has went through a difficult time; I can't imagine what it would be like to have a son diagnosed with a disease such as CF. It would be utterly devastating and incredibly difficult. So a lot of leeway has to be given on how a person deals with that sort of thing; but that can't excuse this type of behavior and mindset. And really, what it is doing is ruining any chance that she has of a relationship with him. I really wish for his sake that this wasn't going on. I see how much it hurts him and how difficult it is. It makes me so angry that his emotional energy is being spent on this, instead of on getting healthy and fighting CF. I wish that she could see how her attitude affects him (and me) and how damaging it is. We deal with the CF alone, not because we choose to, but because that is the only choice. She isn't available or able to help deal with it, and from his perspective, she wasn't able/available long before I came into the picture. I wish that we had more help in handling this. It is exhausting and incredibly difficult to do on our own. And as it is now, involving "family" at these times seems more like an additional stressor than help. (There are some exceptions, this doesn't not apply to all of the family--for example, his Dad has been great in helping. He has been to the hospital with Gess many times and I know that he will always back me up in dealing with the doctors or even in talking with Gess when things are difficult, etc.).

I wish that it were easier to turn away from family. The concept of family is great. I love the idea of having a group of people that are there for you no matter what and who love you unconditionally. People that you call if something happens, and you know will be there. People that support you and carry you if you need it. I would love to have that sort of family. In generally that would be so great, but especially in dealing with a disease like CF. Unfortunately, with a few exceptions, that has not been the case for us and I hate to see the toll that is taking on Gess. Which of course makes me want to stand up and fight for him even more. I want to protect him from this hurt, but I can't. I wish that he could focus on his health and have more support. Also, I wish that I had his family as support. My family is completely worthless when it comes to any of this, so I wish that I had them as backup. I wish that I could talk to them about what is going on and have them a part of our life. I really just wish that I had a "family."

Sunday, July 26, 2009

Dawn if you are reading this...

I keep trying to respond to your email but it keeps getting bounced back to me!  Email me :)

Tuesday, July 21, 2009

Common cold virus efficiently delivers corrected gene to cystic fibrosis cells

Common cold virus efficiently delivers corrected gene to cystic fibrosis cells

CHAPEL HILL -- Scientists have worked for 20 years to perfect gene therapy for the treatment of cystic fibrosis, which causes the body to produce dehydrated, thicker-than-normal mucus that clogs the lungs and leads to life threatening infections.

Now University of North Carolina at Chapel Hill School of Medicine scientists have found what may be the most efficient way to deliver a corrected gene to lung cells collected from cystic fibrosis patients. They also showed that it may take this high level of efficiency for cystic fibrosis (CF) patients to see any benefit from gene therapy.

Using parainfluenza virus, one of the viruses that causes common colds, the UNC scientists found that delivery of a corrected version of the CFTR gene to 25 percent of cells grown in a tissue culture model that resembles the lining of the human airways was sufficient to restore normal function back to the tissue.

"This is the first demonstration in which we've been able to execute delivery in an efficient manner," said Ray Pickles, Ph.D., associate professor of microbiology and immunology at the UNC Cystic Fibrosis Research and Treatment Center. "When you consider that in past gene therapy studies, the targeting efficiency has been somewhere around 0.1 percent of cells, you can see this is a giant leap forward."

"We discovered that if you take a virus that has evolved to infect the human airways, and you engineer a normal CFTR gene into it, you can use this virus to correct all of the hallmark CF features in the model system that we used," Pickles said. For instance, the experiment improved the cells' ability to hydrate and transport mucus secretions.

The resulting paper is published in the July 21 issue of the journal PLoS Biology.

Now the researchers must work to ensure the safety of the delivery system. In a pleasant surprise, simply adding the CFTR gene to the virus significantly attenuated it, potentially reducing its ability to cause inflammation. But the scientists may need to alter the virus further.

"We haven't generated a vector that we can go out and give to patients now," Pickles said, "but these studies continue to convince us that a gene replacement therapy for CF patients will some day be available in the future."

In addition to Pickles, UNC co-authors are Liqun Zhang Ph.D, research associate, CF Center; Brian Button Ph.D., assistant professor, CF Center; Sherif E. Gabriel Ph.D., associate professor, pediatrics); Susan Burkett, research analyst, CF Center; Yu Yan, research specialist, CF Center; Yan Li Dang, research specialist, CF Center; Tristan McKay Ph.D., postdoctoral fellow, CF Center; and Richard C. Boucher M.D., Kenan Professor of Medicine, director, CF Center.

Other co-authors are April Mengos of the Mayo Clinic College of Medicine, as well as Mario H. Skiadopoulos, Ph.D., Leatrice N. Vogel and Peter L. Collins Ph.D., all of the National Institute of Allergy and Infectious Diseases, National Institutes of Health.

The research was funded by the National Institutes of Health and the Cystic Fibrosis Foundation.

Friday, July 17, 2009

New Drug with potential to treat both PA and B. Cepacia

Cystic Fibrosis - Liposomal Tobramycin Receives Second Orphan Drug Designation Within Weeks

Main 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