Sunday, September 19, 2010
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.
Wednesday, September 15, 2010
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.
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!
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.
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!
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!)
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!
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. :)
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.