50!!

the eFlow nebulizer - fancy!

I hit 50 today (fev1) at CF clinic.* Yay! I was at 50 or slightly higher two times last year, and before that it was a couple of years since I had been that high. The true coolness to it is that I am continuing to go down on my Prednisone, which has inflated my numbers the last few years. I'm currently at 3mg/day, if that means anything to you, and hoping to be off it entirely at some point in the near future.

Other news from clinic: I may be switching from Zenpep, my current digestive enzyme, which I have been on for only a month. Let's just say it is slowing me down and I'm not as happy with it as I was my old Pancrease. I am trying a third enzyme now, Creon, which offers free vitamins. I hate to switch so much, especially when the reason for the initial switch was a pause in manufacturing of my old brand while it was rebranded, but it will be worth it to find something I am happy with.

I had to turn in all of my stuff from the aztreonam (an inhaled antibiotic) extended access program that I was on. I was sad about that because I am in the middle of a 28-day cycle of this drug, which I need three times daily, and I only have three nebulizers to do it in (whereas I had built up to nine with my new ones from the company plus my old ones from expanded access) - which means that I have to wash nebs every single day! That truly, truly sucks. One of the worst things about CF in a day-to-day sense is washing nebulizers. It is such a pain in the rear!

I continued to sing the praises of NAC, a supplement I've been on seriously for several months now, but my doctor is not as excited as I am about it. He wants to see the research done to prove that I am not just a fluke. But how can I be a fluke? People with CF don't just improve with nothing. In fact, even with the addition of therapies, they often continue a slow decline. Not only have my numbers gone up, and I have not been sick (plus other benefits I won't mention here,) but my Prednisone, as I said before, has continued to go down with few side effects. I have always had tremendous problems coming off Prednisone and it wasn't until the NAC that I was able to do it so smoothly.

Even though my doctor is a skeptic, he said that UNC might be interested in a simple research study with respect to NAC and me ... they would want me to drink it (like I do now) or inhale it (like is usually done for other conditions that use it) and then test how much is actually getting into my lungs. Sounds pretty painless and definitely for a good cause.

What else...oh yeah, did I mention that my fev1 was 50%??? :) :) :) Kind of makes up for all the other crap I've been dealing with lately.

*For those of you who don't know what this means, 70 or higher would usually be considered "mild" or, for me, low maintenance/low symptom CF; 30, on the other hand, is usually when you start to think about transplant.

R & R

Our new marbled bars

This weekend, after 808 Soap's monthly First Friday event, I had no plans. Surprising for me! Todd went to the mountains to visit his dad with the dogs. The kitties and I had a nice time by ourselves.

On Saturday, I went to my mom's pool, then was a little sluggish from the sun (I guess) at my yoga class. I went out with my mom for Indian food that evening. Today I slept in, ran a couple of errands, and then came home and did some stuff around the house. I even exercised on the elliptical machine. I also made several phone calls and caught up with out-of-town folks.

I am feeling better, mentally I mean. I have hardly had any abdominal pain since my GI appt last week. While I'm not convinced whatever it is has gone away, I do think it is at least not urgent, so that is good. My appt was kind of a flop. I didn't much like the doctor...I won't say more than afterward Todd said "it seemed like she kept forgetting you have CF." Yeah. That won't do. Also, she wanted to do an endoscopy, which I am not convinced is necessary. So I asked my CF doctor to refer me to another GI doctor at UNC, which is where all of my other doctors are. I am much more comfortable with that because if I do have to have any kind of procedure, everyone will be on the same page and my doctors will be the ones consulted if there are any issues.

In other news, my dad was discharged from the hospital on Tuesday and is doing better. My step mom also sounds better. That is a bit of a relief. I want to try to go up and see him sometime between when we get back from Montana (early Sept) and Thanksgiving, when I plan on going up there again.

And the consistent bright spot...my lungs continue to be really good. I don't feel like my PFTs accurately reflect how good I'm feeling. I have continued to go down on my Prednisone (I am at 3mg/day now) with no ill effects except for some pain while exercising today that I believe may be due to a little increased inflammation or my body getting used to this past taper. I know I wouldn't have been able to go down on Prednisone this easily without the NAC. Hurray!

Sunk

This post is kind of depressing, so I thought I would put a cute kitty picture at the top. This is Lucy lounging on a beach towel. Lucy lives at Todd's aunt's house at the beach - a house with no permanent residents. I think his aunt across the street feeds her. Lucy is like her mother - Chatterbox - who was also very vocal. I love her! She is my kitty at the beach. :)

Anyway, I've been a little depressed lately. That's really not like me, normally. But it makes sense - there has been a lot going on - and so I have just been letting myself feel it. I hate to act all put-upon, but I have kind of a lot going on with just my normal life, health-wise. How much can one person take? For the past week,it has felt like a sort of breaking point. I'm honestly not sure why, I know things could be way worse, but they are just really getting to me right now.

It's hard to say when it started, but I know that when I visited my dad in Cleveland there was a sadness there about my dad's health that hasn't been there before. It is so hard to watch your loved ones struggle. Shortly after that, we learned of - yet another - one of Todd's family members coming down with cancer. And it's bad: stage four, spread everywhere. It's so sad. With both Todd and I's dads recent health problems, and then hearing about Todd's cousin, when my gall bladder issues started happening, (and the sick kitty) it made it seem much worse than it ordinarily would.

There has been a bit of good news this week: Gus does seem to have responded to the antibiotics. And I had a hida scan to follow up from my ultrasound and it came back normal. That same night, while having a grilled cheese in celebration of my good test results, I had gall bladder pains again. So I'm not at all convinced I won't still have to have it out, although it's nice that it isn't urgent and/or incredibly painful. I'm going to ask to be referred to a GI doctor to discuss what all of this means.

And there was more sad news, too. This morning I found out that my dad had to go to the ER earlier this week because of another escalated panic attack. It doesn't sound as bad as the other times it has happened, but it scares the crap out of me.

Adding to my morning, Todd and I had a stupid argument last night (I'm sure my stress added to my irritability) - things are fine, now, it is very unusual for us to fight - but it left me feeling awful this morning. Must. Not. Fight. About. Dogs. Again.

So yeah...I've been better. Today I was so stressed I was actually feeling dizzy - not good.

However, I came home from work, took a nap, and then had a really enjoyable evening with several of my oldest Raleigh friends. It isn't all bad, I know.

Whirlwind

The last three weeks have been a whirlwind. The week after D.C., Todd and I drove up to see my dad in Cleveland for the 4th of July. We had a really great time visiting and also got to see some cool stuff including an Indians game, the Rock & Roll Hall of Fame and drive through an area outside the city that has a number of Amish folks living.

The highlight of the outings was either seeing the Amish in their horses and buggies or walking around in Johnny Cash's tour bus. Both very cool and amazing in their own way. But of course the real highlight of the trip was seeing my awesome family up there - including three little nieces who I adore.

About a week after getting home from there, I went to Asheville for a night for a work thing. Normally, I don't travel much for work. But this was something special. The Secretary of the Interior is holding 20 listening sessions (in between flying to the Gulf to oversee oil clean up and restoration - shows what a priority this is to them) around the country to get peoples' input on how to get young people more turned on to the outdoors. Obama announced this "America's Great Outdoors" initiative recently and the DOI is researching the subject and will compile it into a report for the president by the end of the year.

Ken Salazar was not there, but his chief of staff was - as was the head of the Fish & Wildlife Service. The event was called a "listening session" and was held at a community college. The auditorium held 400 people and it was basically full of conservation-minded folks from all over the state. The Washington folks were very impressed by our enthusiasm and by what we have managed to get accomplished here even during tough economic times.

At the listening session, after some short speeches, we were all assigned into rooms which held 10-20 participants and were asked to answer four questions as a sort of discussion. There was a moderator to keep on topic and a recorder who wrote down everything that everybody said. (This is what will be used to compile the report for the president.) We talked about obstacles to getting kids connected to the outdoors, what might be done and what the federal government can do to help the states.

There is more to tell, but that is the gist of it and so I will move on. Except I do want to say that I got the chance to stay with a very old friend who I hadn't seen in two years. She lives in West Asheville and I stayed at her house so we had time to catch up which was great.



I got home from the mountains Thursday night and turned around and went to the beach (Holden) Friday morning with a few of my girlfriends. Traveled from one end of the state to the other! We had a lot of fun. Got some good beach and pool time in without overdoing the sun. We cooked good food, drank and played games. Really enjoyed the relaxed pace of the weekend.

My other news is that I had some pains in my upper right abdomen last week and went to the doctor and got an ultra sound. It showed "suspicious globules" in my gallbladder. I think this means that I don't have stones but rather spots of sluggish bile which could become stones. My doctor ordered a hida scan - which is basically a more sophisticated scan done with dye to look at your gallbladder - to follow up on that. Depending on how that goes, they will refer me to a surgeon. I'm kind of nervous about that but trying to take it one step at a time.

My mom had her gallbladder removed when she was 30, but she was having a ton of pain. I have not had a ton of pain, thankfully. But I have since found out that it can be hereditary. Diabetes is also a risk factor. According to my CF doctor, it is not uncommon in CF, either.

I don't mean to jump the gun by thinking that I will need to get it removed, but I would be lying if I said I haven't been thinking about it a lot lately. I keep thinking that I have for the most part so far avoided GI issues so commonly associated with CF only to have this crop up and possibly make things "not right" forever. I read that you are supposed to eat a low fat diet after gall bladder removal. Are you kidding me? Life without cheese right now seems impossible.

One other thing: I have a semi-sick kitty in the house. My cat Gus has been acting sluggish a couple of times and then he will seem better; I've also noticed that he has lost weight so it was time to call the vet and schedule for him to come. Gus has an appointment for Thursday morning and I hope to get some answers. And I really really hope that the answers are not something horrible. Love my guy so much.

D.C.

The always beautiful Union Station, Washington, D.C.

I'm a little behind in blogging... *sorry* I really do love writing and keeping you up on the latest happenings of the Catboogie. So I hope it isn't too discouraging.

Week before last I had to go to D. C. for some work training on Monday and Tuesday. I decided to ride the train up - it's about six hours from Raleigh by train; 4.5 to drive; and I hate flying, so it seemed like a good option. The ride up was smooth although I was a little panicked because I'd left the office on Friday in such a haste that I forgot to print out the information about the meeting time and place! I had emailed various people asking, but they were not answering over the weekend. I thought I figured out where the training was held; and I thought it probably started at 9, but decided to arrive at 8:30 for good measure.

So let me back up a bit. The hotel that was booked for me by our national office was called Hotel Rouge. Usually when one goes to D.C. for work they stay near the World Office proper, which is in Arlington, VA, so this was truly a treat. The Hotel was near Dupont Circle, a sort of newishly gentrified part of town (by newish I mean the last 20 years). It used to be sort of ghetto but has since turned into a thriving gay and hipster community. I was right at home. :)

I checked into the Hotel Rouge about 4 pm on Sunday. I quickly got settled and decided to set out for the National Gallery because I had never been there and they had an exhibit of Allen Ginsburg photographs. I have always loved the beats so I was super excited about it. I browsed through the main gallery, checked out the Ginsburg photos (which I loved!) and then crossed the street to the Sculpture Garden - a block large exhibit of different modern works set along a gravel path.

When I was done with that, I decided to head back into the vicinity of where I was staying and stopped at a restaurant near Dupont Circle and got two appetizers and a couple of beers. Fortunately I was not hungry because of the incredible heat - they were the smallest appetizers I have ever gotten!

The next morning, I got up and arrived by 8:30 at the alleged meeting place only to discover a locked door and a receptionist downstairs who had no clue of what I was talking about. Fortunately, around the same time, I received an email from the training coordinator who informed me that the training actually did not start until the following day. Not quite sure how that mistake happened! Pretty embarrassing, actually. But in any case, I returned to my hotel, changed clothes, extended my stay an extra night, and then changed the return ticket for the train.

The downside of the mix-up were obvious: I'd messed up the dates of my training, I needed more clothes and would be slightly short on a couple of my meds. But the good side was that I had an entire unexpected day of sight seeing in D.C. I decided to go to this new place called Museum - a museum of news. It sounds kind of weird, but it was really cool. Some of the highlights: part of the Berlin wall, part of one of the World Trade Center towers, Ted Kaczynski's cabin (the actual one!), among many many other cool things.

Section of the Berlin Wall

Ted Kaczynski (aka The Unabomber's) Cabin

After that, I headed to Madame Tussauds wax museum. I had never been and thought it would be a good way to kill some time so I didn't get stuck riding the subway during rush hour. All in all a very good day in the city.

Waxen Obamas

Tuesday morning, my training began. It was really good - we were introduced to TNC's new website platform, and talked some about web writing in general. That night, they provided dinner for us at a restaurant near there. No time for sight seeing that day. We finished off the training the following day at noon. I made my way back to the hotel, got my stuff, and took a taxi to Union Station. I love the feeling of just being in the city - you can pretend like you live there, fantasize about the urban life, and no one knows differently.

The train ride back was more crowded than the ride up had been. Every seat in our car was taken - many people were aboard for a long haul (the train runs NY to Miami). Because of various delays, I was two and a half hours late getting back to Raleigh.

It was good to be home. It was even better that I had the next day off work to just chill, unpack, rest up and regroup. Only seven days until Todd and I would set off on another trip - to Cleveland to see my dad for the Fourth of July. More on that to come.

Drug Development Pipeline

This is something I like to take a look at from time to time - the drug development pipeline for CF medications. The two things that I am most interested in are VX-809 and TIP (Tobramycin Inhalation Powder). VX-809 is the "gene therapy" discussed in relation to CF (specifically for my mutation). It could be very very promising, but who knows how far off it is?

(From cff.org website)

Drug Development Pipeline

The Cystic Fibrosis Foundation has built a dynamic "pipeline" for the development of more new potential cystic fibrosis (CF) therapies than ever before. To treat a complex disease like CF, therapies must target problems in the airways and the digestive system.

In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.

Below is a "snapshot" of those potential CF therapies that are currently in development as of February 22, 2010.

A Musical Confession

Firstly, apologies for so much time passing since my last post. I really do think about writing on here often, but have to balance that with time issues and having worthy content.

I have been doing really well. ...mostly. Actually, the way last week ended, I was thinking I might be headed for IVs, and I was going to take the weekend to rest up and see if I could recharge or if my fate was indeed sealed. During my fairly strenuous Saturday yoga class, I had a new experience - and I ain't talkin' enlightenment, baby! Rather, I coughed up a bit of blood during a sequence that involved a lot of bending over. I realize this might sound horrific to some of you. But it's not all that uncommon in CF.

The trick with hemo, as it's called, (short for hemoptysis) is to know whether the trigger (being in a smokey bar, say, or in this case bending over - which causes a rapid change in blood pressure), is something that just happens to annoy your lungs on that particular day or if it is a sign of infection. Mostly, the latter is true. However, there are some lucky folks who just bleed from time to time. While I thought the incident meant I was headed for IVs, since I was feeling well otherwise, my doctor and I decided to wait a few days and see how things went. And I've been back to normal, which is awesome.

Onto the topic of my post: music. A short musical history of my life would go something like this: The Police were the first band I ever fell in love with their music (thanks to my dad); high school I struggled to steer clear of the hippie music all around me, started listening to Nirvana, REM, U2 and stuff that sounds good when you're high; college brought some branching out, started liking a little jazz, got into Red Hot Chili Peppers, Foo Fighters, Ben Harper (!). In other words, I've been pretty main stream for much of my life.

Another confession: For many years, I had an addiction to shitty radio. Yes, shitty - top 40, one hit wonder, destined for a compilation of songs to one day be sold on a late night infomercial (and yes, I did think about buying one of those too!)

Now that we have that out of the way, I want to say that I have never, ever, with the exception of John Mayer, bought any of the shitty stuff I heard on the radio. I knew that it wasn't good music, but rather just something catchy to listen to and think about how that does kinda sound like that one guy you used to date. Ahh... isn't life funny like that.

Now, fast forward to last December. The CD player in my car had been broken for over two years, and when I was looking for a replacement it ocurred to me that I might like to get satellite radio. Todd was definitely into the idea (hoping also, no doubt, that my taste in music would improve with exposure to more than just my AM/FM radio). So I got Sirius radio. This was pretty much the beginning.

At first, I didn't listen to it much. I couldn't figure out my new radio, and besides, I had a lot of catching up to do on listening to all my CDs. But after a while, I started listening to a couple of stations. And I became interested in some of the bands, looked them up online. I'd go to Amazon and listen to samples of their albums. Then I discovered Pandora and, like its name suggests, things pretty much exploded.

I've been to the local music store three times in the last few weeks. I love browsing the used CDs section - I really hate paying full price for music unless it's something I know I'm really going to like. And I like the thrill of the hunt, and the randomness of what you can come across. It's like this whole thing I'd forgotten about - the total high that comes from finding an album you love, playing it over and over and over, and wanting to share it with everyone you know. There are all these amazing bands I've been missing out on! I have a lot to catch up on.