Fun stuff outta the way

I got the fun stuff out of the way in my last blog. Now time for an update about the serious stuff!

So the big, huge, ginormous news in my life is that my dad, who has emphysema and has had increasing difficulties over the last two years, has decided to see whether or not he is eligible for a lung transplant. The last time he was in the hospital, which is when I was in Montana, a transplant coordinator approached him and said that ostensibly he seems like a good candidate. So we will see how it goes.

I had talked to my dad about transplant a couple of times. I really thought that he was not open to the idea. But now, I think that "dismissal" was at least partly because his situation did not seem serious enough to him. But after having had a rough summer, things changed.

Even being the veteran I am dealing with lung disease and transplant, this is a lot of emotions to deal with. And I'm not quite sure how far I've gotten with it all. It is so hard to be so far from my dad (he is in Cleveland, OH and I am in Raleigh, NC.) It is hard to gauge how someone really is just by the phone. I'm currently planning to go up to visit him the entire week of Thanksgiving. I went up there for a week in April and it is so much better than the short visits. So I am focusing on that.

So that is the dad news. Now for the 'me' news:

1. I came down with a cold in Montana and I have been slowly, SLOWLY coming back from it. I have not been to yoga or exercised since we got back two weeks ago because I was worn out at the end of the day. Finally, today, Todd and I rode bikes downtown. It felt good to move again. And I will be back to yoga this week, too.

This is my first cold since starting on the NAC hard core and I have to say - again - I think it helped me a lot. My one year since IVs anniversary is coming up (Sept 29, baby!) and so I was really depressed at the thought that I would not make that mark because of situation that was preventable. Hopefully I won't have to worry about that now. My lungs are still a little more congested than usual, but each day seems a little better.

2. I went for a consult for another GI doctor about my gallbladder issues last week, this one at UNC, where all of my other doctors are. I really liked the woman. It was nice that she wasn't stumbling over the names of my CF medications and she didn't have to ask why I was on things. I completely agreed with her course of action 1. redraw my liver functions to make sure they are still not elevated; 2. redo the ultrasound from July to see the status of my sludge (since I have not been having too many symptoms, it may have gotten better); and 3. after seeing those results, then think about referral to a surgeon.

She did not agree with the previous doctor's recommendation of an endoscopy (nor did I). And, unlike the other doctor, she said my pain very well could be a result of my gall bladder. (Another interesting thing I found out was that the difference between sludge and stones is not a matter of consistency but rather size; so, enough sludge can cause the same sorts of pain and problems that stones do. But sludge, unlike stones, has the ability to be reabsorbed by your intestines and go away.)

3. My brother came down for a visit last weekend from Michigan. It was so good to see him! I love me some brother. He actually came down because we took my mom to see Garrison Keilor (of whom she is a huge fan) as our mother's day present for her this year (Summer of Love Tour, above). She had a great time. I was feeling pretty awful because of the cold, but I still enjoyed his visit. :)

4. My soap partner, Elaine, and I are getting ready for a big soap event in three weeks. We are going to be selling at a women's charity bicycle race called le tour de femme. So we are busy not only making soap but also trying to figure out how we are going to set up under a tent. We hope to do more craft type shows (there is this really cool thing in Raleigh called the Handmade Market that we want to get in on) but this will be our first one! Unfortunately, Elaine is going to be in NY during the event, but I will have a friend or two to keep me company.

Montana Trip

View from a typical country road in Montana

Fantastic trip out west. Probably did too much, which Todd and I are often guilty of, and didn't take enough time to relax enjoy each others company. But lots of fun and stories to tell. (The stories will have to come in person, this will just be a run-down of what we did.)

We (me, Todd, and our friend Gabriel) landed rockily into Bozeman, MT on Saturday Aug. 28. When we arrived at Todd's brother's house in Dillon, I could tell right away he had a cold and my heart sank. Sure enough, Todd came down with it in a couple of days, then Gabe, then finally me. That was probably the lowlight of our vacation.

Sawyer at Grasshopper Ridge

We got to spend a few days with our 2.5 year old nephew, Sawyer. That was awesome but man is it a lot of work. The three of us kept him one day and it took all of us pitching in. We did a little fishing, some nice mountain drives, saw a ghost town, and of course thoroughly explored all the favorite bars along the way.

On Wednesday, we headed for Yellowstone - it was Gabe's first time seeing it, which is always fun to experience. (My third time.) We were very conscious of the elevation issue (last time I got altitude sickness b/c we went straight to a very high spot in the park for the night.) I had my pulseox with me and was checking my oxygen constantly. The lowest parts out there are like being in the mountains here, so going into the mountains there can require adjustment. I wasn't too worried, though, because my fev1 is much higher than last time I was out there so I figured I would do better overall - and I did!

Upper part of Mammoth Hot Springs

We stayed the first night outside the park near the Mammoth Hot Spring entrance, about 5,000 feet. Took a short drive into the park that afternoon - saw elk in the middle of the village of Mammoth! and Mammoth itself is truly magnificent, one of my new favorite spots. We drove through some high mountain passes that first day which were kind of hairy for my oxygen - I was pretty uncomfortable a few times when it got down into the 80s - even the guys could feel the elevation, Todd with his then-inflamed sinuses. But back at the hotel it was fine again.

Next, we spend a day driving through Yellowstone's west side - we went to the Boiling River, where a hot spring comes out into a cold river and you can sit and enjoy the warmth intertwined with periods of cold, unmixed water. We saw some paint pots, which are like cauldrons of bubbling mud sitting in the ground. Then saw other geysers, hot springs, geologic wonders, finally making it to Old Faithful right before dark.

Artists paint pots - watch out - they splatter!

That night we drove to Jackson, WY (a little over 6,000 feet.) It was dark coming in so we couldn't see anything. The next day we set out for a hike which I thought would be doable at Jenny Lake. The Grand Tetons are striking; they rise sharply out of the ground to enormous heights; there are glaciers among the peaks. Jenny Lake was fun. We had a picnic lunch and then took a boat ride across the lake to where the trail started. An "easy to moderate" 1-mile climb was almost too much for me - but we made it both to some beautiful waterfalls and to a fantastic look-out. I was so proud of all I was able to do at that elevation!

Gabe and Todd, Jenny Lake behind

We took it easy the rest of that day. (Which was good because I soon discovered I was coming down with the cold I had so far managed to avoid.) That night, we went to dinner in Jackson, a fairly bustling touristy town with lots of downtown charm. Then to the Million Dollar Cowboy Bar. The bar lives up to the stature of its name: there are saddle seats at the bar, there was a country band playing and there were a fair number of authentic westerners. Unfortunately, I was fading fast, even though the people watching was first rate, so I took the car back to the hotel while the guys stayed out. (No telling the trouble they got into but I heard that Todd actually got out and danced to Sweet Home Alabama!)

Outside of Jackson

Saturday, we headed back to Montana through endless fields of Idaho wheat. The rodeo was in town for the weekend and it was a BIG DEAL. We ended up going to the rodeo that night. That was very cool. The bucking broncos were my favorite b/c if the riders fell off, or even if they made it the full 8 seconds, they had these two guys on horseback who would ride beside them so they could jump onto them. Then, the rider would jump down and the two guys would have to chase down the horse, which would still be bucking for a while. Fiesty!

Rodeo

On Sunday, it had gotten a bit cooler (I forgot to say, the weather at the beginning of the trip had been cloudy and on/off rain. But once we got to the park - like magic - it cleared and warmed up nicely.) But we got in a float trip with Brad - the trip would not have felt complete without at least one. It ended up being a pretty nice day despite having to be bundled up and fighting the wind. I think I might have caught the biggest fish that day. Overall, did decent amount of fishing on the trip, without a whole lot of catching, which was fine with me. :)

Me fishing at Bear Creek - sexy!

By our last night, I was ready to be home. I was coming into the worst part of the cold, and was cough, cough, coughing the entire plane ride home (or so it felt.) I hate being that person! I usually clean my seat area on planes when I first board; this time I cleaned before and after. At least I am a considerate sick person, right?

There is MUCH more to tell, but I will save it for another blog.

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.