Oxygenville

 

I was trying to think of a useful health analogy to describe what's going on with me lately and the word "oxygenville" popped into my mind. If you are wondering what oxygenville is like, it is slow without necessarily being leisurely, everything seems to take longer than it should, it is restricting, limiting, frustrating and also a little bit mellow.

Since I am now caught up on all of my happy vacation photos, I will now delve into a bit of what has been going on with me health wise. I got sick while we were out in Montana. It was four days after the flight out there and since I was not around any sick people (and am always very careful) I assume I caught something from the flight itself. This is frustrating because I wipe down everything around Todd and I's seats, wear a mask and sanitize my hands regularly on plane trips.

In any case, Todd and I were able to go on our excursion to Glacier and Waterton National Parks for three days and were able to do most of what we wanted before we started feeling badly. (We both got sick about the same time.) When we got back to our home base in Ennis (Todd's aunt Susan has a cabin there that we all stayed in), all of the four aunts took off to Yellowstone for a couple of nights leaving Todd, his brother Brad and I in charge of both Todd's ailing dad and Brad's four-year-old son Sawyer. (For those of you who don't know, Todd and Brad's dad is dying of cancer and the trip to Montana was a last chance for all of the family to get together with him.)

I was feeling better and worse depending on the day, running some low-grade fevers, coughing and more congested than usual. My oxygen also got low, but that was exacerbated by the elevation out there. I didn't start feeling truly terrible until the morning of the flight home. I woke up with a decent fever, exhausted, feeling like total crap. And of course there was nothing to do but fly home!

I went to see my lung doctor the following day. I felt so bad that I didn't even do lung function tests at clinic because I knew I was going to need IVs. If I had done them, I have a feeling they would have been low enough that Dr. C would have wanted to put me in the hospital. As it was, though, stuffed full of Tylenol and all, I presented better in clinic than I thought I would. I really thought there was about a 70% chance I would be admitted to the hospital, but as it was, Dr. C said if I felt well enough to take care of myself at home then that was okay to do. So I went home and eagerly waited to start on IVs the following morning.

Meanwhile I'm starting to feel really really bad. I am on round-the-clock Tylenol, having headaches, feeling zonked out of my mind, absolutely zero appetite, coughing a lot and my oxygen is low for me. When my nurse comes to access my port Wednesday morning she says, "I've seen you worse" - but I have a feeling it's a close call. I'm also a little anxious because the doctor has changed one of my two trusty IV antibiotics and I'm hoping so badly that doesn't slow down my recovery.

The first three days on IVs I'm still miserable. My fevers are going up into the 101s, I'm sleeping all the time, still no appetite, my blood sugars are through the roof in the 300s and 400s no matter what I do, I'm wearing my oxygen at night and most of the day because of low sats and I'm still having headaches, my PFTs are in the toilet, I'm feeling short of breath at the slightest exertion and to top it all off I develop a pain in my left side near my diaphragm - the doctor thinks it's from infection being close to the lining of the lung. In short, I feel each day like every time I have been this sick I have been in the hospital. And it's fucking miserable being in the hospital when you are that sick with none of the comforts of home (furry and otherwise.) I kept going back and forth about feeling I should be admitted, but I'm glad that I stood my ground with being home - I think I made the right decision. Too many bad/annoying/bullshit things go along with being hospitalized.

The next few days were a little better. My fevers went away, I was able to get off of the oxygen more, I had a bit more energy, blood sugars were not as crazy, my shortness of breath was easing up, headaches were better, pain was getting better. In short, I started to feel more human again. It's like that time right after a fever breaks and you say to yourself, I'm going to make it. And I knew that I was out of the clear as far as the hospital which was a huge relief.

As I approach the 7-day mark on IVs, I again start feeling worse. My nurse, who comes to my house to draw labs and change my port needle, reminds me that this means that things are breaking up and starting to move out. She says my lungs are sounding better - so this is a good sign. However, I am feeling more tired as the bugs proliferate and die in my body, and my oxygen is once again low meaning I am wearing the oxygen almost 24 hours a day now.

There are many corners to turn during a CF exacerbation, but I feel like I am turning another one now. Yes, my oxygen is still low (my doctor wants to make sure on Monday I didn't develop a blood clot from flying which would be making my sats low). But I am feeling a little more energy - in fact I am almost to the point of being ready to exercise, which is the real thing that is going to pull me out of this. Exercise, Prednisone and time.

Montana trip in pictures

The cabin, Ennis MT

Relaxing on the back porch.

My first drive around the lake we spot many many critters. Here, antelope graze.

The sisters take me shopping downtown Ennis and we stop for lunch (and huckleberry ice cream!!) at the Ennis Pharmacy.

Brad took us out for a float down the Madison - we saw 5 eagles that day! (3 bald, 2 golden). Here, Todd teaches Sawyer how to skip rocks.

Sawyer enjoys being on the boat, but he likes more 1) reeling in fish that his daddy caught 2) looking for rocks in shallow parts of the river and 3) rowing the boat and 4) fishing with his Spiderman fishing pole.

Brad instructs Todd where to cast - he knows enough to leave me to my own casting devices. :)

On our trip up to Glacier, we stop and see Sawyer's mom and boyfriend Michael in Missoula. They kindly offered us a free place to stay for the night - a luxury motor coach!

The next morning, Jill takes me horse back riding! She rode her own horse while I rode a (chubby) sweet older horse named Yuma.

View from atop of Yuma. It was a beautiful morning for a leisurely ride.

We stopped at a brewery for lunch in White Fish on our way up to Glacier from Missoula.

Our first looks at Glacier were a little rainy, but it soon cleared up to reveal amazing scenery.

At the peak of the "Going-to-the-Sun" road, we stopped and hiked The Hidden Lake Nature Trail. The views were nice, but the various critter sitings - a two-color version of the woodhcuck, marmots, picas and mountain goats - were even better.

Rock chuck - their version of a wood chuck.

So many really beautiful wild flowers in bloom.

Pink, purple, yellow and white flowers.

Snow and streams of run off dotted the Hidden Lake Nature Trail.

At the Red Rocks, Waterton National Park, Canada

Our adventurous hike through berry-filled bear country in Waterton took us to this serene lake. We got caught in a wicked storm on the way back!

Todd checking out some road side signs in Waterton.

Our last morning in Glacier we again rode the Many Glacier road - the colors that day were just astounding.

Having both come down with colds, we are extremely happy to make it back to Ennis. Here, a baby deer comes to visit us in the yard! We were wondering where her mother was and about an hour later she appeared - happy baby!

Once Roger has recovered from the flight out, we take the chance to get some family photos.

Hot tubbing with superhero action figures is one of Sawyer's favorite pass times at the cabin.

Todd and I go for an evening ride around Lake Ennis and witness a beautiful sunset from the day's smokey sky. Smoke from wildfires in Idaho kept me inside for a few days in Ennis.

On our last day, Todd and I take Sawyer to Virginia City. Here we are on the little train ride that goes back and forth between Virginia and Nevada Cities, two gold-mining frontier towns.

Atlantic Beach Vacation in Pictures - Mostly Simon :)

Morning visit to Fort Macon

 

Happy in the play pen

Me plus beach view

 Simon waking up from a nap in his carrier

Sometimes I steal Simon so I can take pictures of the two of us :)

 Rabbit!!

 Lemon face

 Evening walk on the beach

 Me and super longtime friend Erica

 JoEllen and Simon

 Family pose outside the Aquarium

All of us!

My freaky clinic appointment

My last dose of antibiotics tonight...sa-weet!

I wanted to tell you about my appointment today. (Follow-up from being on IV antibiotics for 2 weeks.)

The order of things was a little strange. I actually saw my doctor before (and again after) I did my lung function tests because the PFT lab was backed up. We agreed that I had made the right decision to do IVs and were catching up on other things when the lab technician came to get me.

On my first blow, the absolute strangest thing happened...I was at the end of my expiration, squeezing every last bit of air out of my lungs, when I suddenly found myself not at all in my own body anymore. It lasted for 15 or 20 seconds. I was trapped in a semi-conscious state, heaven and earth collided and everything was one. In short, I came very close to passing out - which has never ever happened to me before.

I told the technician but she wasn't too surprised. She had some sort of name for it, "vageling down" or "a near syncopal episode" - which was a fancy way of saying you almost passed out: you get light headed, start seeing stars...  It can happen when the blood rushes out of your head too quickly, which can happen with forced expiration like during a PFT test, but it may be worse since you are continuing to push air/exert pressure on the vagel nerve. I guess it was like a gigantic mondo head-rush, the difference being that it lasted longer. In any case, I was relieved to know that I was not the first one to experience this.

When I asked WHY this could have happened, she asked if I had eaten - yes, I had a normal breakfast; She said that I could have been a bit dehydrated - but I have been drinking water like a fiend for the last week as well as mostly staying out of the heat and besides it's only 83 degrees today! In other words, both of her suggestions were extremely improbable, so I found myself trying incessantly to figure out what might have been different about today than other days. I still have no idea.

"deepbreath" from lamchop.wordpress.com

 Back to PFTs: I took it easy on the next two blows. As in - I stopped way before I was actually out of air so that I wouldn't come to the point of la-la-land. And all and all, my numbers were up about 5%, which is good but not spectacular. I am happy with it, though, given how I am feeling symptomatically.

Honestly, I was a little shaken after 'the incident' for the rest of the appointment. I had told both my doctor and the technician and neither of them were too alarmed. So I didn't feel in any kind of medical danger. But when something weird and unexpected like that happens, I automatically feel anxious and my brain goes into detective mode.

I just hope that it never happens again.

 P.A. bacteria in a petri dish, Harvard University

The second thing that was kind of strange: my bacteria cultures from two weeks ago (i.e. right before I started IVs) showed my bacteria concentrations lower than I remember them being in a long time. Usually they are all 3 + and 4 + (4++ is the max), but everything was 1 +, except for my multivorans which was 3 +. My doctor said that in his experience, over time one bug tends to win out over the other ones. Is that was is happening, or is this just an accident? Is this a new trend or just a fluke? There can be a lot of variability to these tests, so I'm not putting too much stock in it, but I will be interested to see what happens going forward.

One other note on that. Not that it is necessarily good or bad, but the multivorans is one of my better bugs in terms of antibiotic resistance. In other words, lots of antibiotics still theoretically work on it (unlike my other bugs that are more particular.) So like I said, I will be watching the 'Battle of the Bugs' closely.

And, finally, a bit of good news. I had a bone scan this morning and both my femur and hip bones were WAY UP in density - yay! I am not sure why this is - I had an IV-bone strengthener about a year and a half ago, but with all of the Prednisone I take and the caffeine that I drink -- let's just say that I consider myself very lucky.

Sometimes it doesn't pay to wait

My co-worker, Mike, and I at TNC's River Jam Tent at the US National Whitewater Center - June 2012

Hello loyal readers!

It has been some time since I felt inspired to write, and you know what that means. Time for a quick run-down of what has been going on!

The big(ish) news is that I am currently on a 2-week course of IV antibiotics. I had not been feeling spectacular for a while (more congested, coughing more than usual...) for a while, but I was totally hanging in thanks to exercising a lot and my trusty stop-coughing go-to pills, guaifenesen. The cards really started to fall the week that I had a grant writing workshop in Greensboro mid-June - I was feeling super tired and run-down. I got started on some oral antibiotics which worked really well for a week or so when I went to see my doctor.

At that time, my numbers were a hair below what they were last time, which was also a little lower than they had been the time before that. My real concerns were my energy dropping and also that I have two awesome vacations coming up that I want to be in tip-top shape for. So we went for the IV antibiotics. And I knew right away that I had made the right decision. (And, for the record, Todd knew like three weeks before then that it was time for IVs soon.)

The day after I started on them I felt really horrible: tired, achy, malaise, fever, no appetite. But since then, things have been going along pretty well. I haven't had any trouble with the Tobra (I had some tinnitus the last couple of times I was on it, which can correspond to hearing loss) except that they had to increase my dose because my levels were too low.

But the really weird thing about all of this? Unlike every other time I've been on IVs when I would totally beat myself up about missing work and always be trying to do more than I should, I have been totally enjoying my time off! I feel kind of guilty saying that. But who wouldn't love an unexpected 2-week vacation? Of course it's not all fun, but largely I have slowed down and taken time for myself to heal. And it feels really nice.

Image taken from sodahead.com

In other news:

• I am finished with my PT for my herniated disc/sciatica! And I leave there having a solid set of exercises that work really well to control my symptoms. Still have not gotten back to yoga - that is the next step. Also still doing monthly acupuncture and weekly massage (which is absolutely fantastically awesomely paid for by my insurance.)
• Todd's dad has been staying with us a lot lately - he is getting cancer treatment here in Raleigh and lives several hours away. He started chemo (for the second time) recently and he's having a bit of a rough time of it. His health has been really up and down, and it's hard on all of us. Especially him. All of us are focused on our trip to Montana right now.
• I got out with Elaine to sell some soap last First Friday! We sold it at a friend of our's bar. I know it sounds weird, it kind of is, but it's fun. 
• Super excited about going to the beach with my family during the third week of July. And also  for our Montana trip in August!
• Work is going really well. I have an intern! Who is both awesome and really talented. This is my first time really managing somebody and I really like it. Also, I was doing a bit of traveling in June and July - two trips to Charlotte and then Greensboro for the grant writing class. It was nice to get away.
• Probably not news to any of you that the weather here has been brutally hot! We just broke the record for the number of days in a row over 100. Between that and the holiday last week, it's as good a time as any to be missing work and just laying low at home.

Image taken from kbosweeney.wordpress.com