February Update

In general, life is really really good right now. Work is going better than ever, my lung health has been excellent, I have finally gotten back to yoga! and we have been making a lot of trips up to the mountains.

On the flip side, my back/leg problem has once again become a daily pain maintenance issue for me. We have also been learning to live more frugally and I am trying to tackle what I consider to be some ongoing personal demons with a new therapist. That's it in a nutshell!

Work has been incredibly fulfilling, and very busy. I just had my mid-year review (and my 5-year anniversary, coincidentally!) and I feel more than ever now how my personal goals align with those of the departments I work for and the organization as a whole. I continue to do a lot of writing and web work (my passions) and I have a couple of projects in the works. Most importantly, I am creative, ingenuitive and able to use my web/writing talents at work and I am very appreciated by all of those around me. Oh, and we moved into a new office space which is an incredibly cool, hip environment to be working in on the American Tobacco Campus in Durham.

Pictures of the American Tobacco Campus - a renovated area of 1950s tobacco warehouses that were abandoned in the 1980s. The original buildings have all been renovated and a central courtyard area has a man-made river and a grassy area where concerts are put on during the summer. The Tobacco district is right across the street from the minor league baseball team the Durham Bulls. ATC's most famous resident (to me) is none other than Burts Bees!

The current story of my lungs has a couple of facets. I have been lucky enough to not catch any viruses lately. Because I was feeling good, I decided to start tapering my elevated dose of Prednisone a few months ago (I had been at 20 mg/day since August and my baseline is 10 mg/day.) Also, about 4-5 weeks ago I started keeping track of calories again to lose a few pounds and that has made me increase my exercising a lot (so that I can eat more than I otherwise could.) Because of my increased exercise and (an initial surprise to me) my lowering Prednisone dose, my back/leg again started giving me trouble. I guess I didn't realize how much the Prednisone had been helping my herniated disc issue.

I once thought my disc issue would get better, but I now know it is going to be something I have to live with forever.

In response to this, I am trying to do my PT exercises (or core work) every 2-3 days; icing; and I am back on a (relatively) lot of pain medicine (Alleve, Tramadol and the muscle relaxer Soma are all a part of my daily routine.) I am currently at 12.5 mg/day of Prednisone and, honestly, I don't see how I'm going to be able to get any lower than that. I might even have to go up - I will talk to my lung doctor next week when I see him about this trade-off I am experiencing.

After several months of "restorative," "yin" and "relaxing" yoga classes, I decided to try a normal yoga class in January. I was very careful and made a lot of modifications. Fortunately I have been doing yoga long enough that I can participate in a class without feeling the need to be competitive. (Yoga teachers always say "it isn't a competition - do what is best for your body!" but I don't care what anybody says, that is a hard lesson to learn.) Anyway, the regular yoga class was GREAT and I had absolutely NO adverse effects from it! I was thrilled, and since then I have been going to 1-2 classes per week. I am also starting to do a pilates class because that will give me core work (like my PT exercises) without having to do my same old exercises at home. Boring!!

Pilates, like yoga, is done on a mat. But the focus is on your core muscles, or the muscles that hold your spine in place.

On another topic, we cancelled our Europe trip that we were going to be going on with a group of friends in March. We have spent a LOT of money on dental work over the last year...we need a new fence...there are always unexpected things that come up...we need to get in a better place financially. I am happy to report that I have been very disciplined in only spending money on things that I need for the past several weeks. My tendency otherwise is not to run out and buy things just for fun, it is getting into this state of mind where I am always thinking, "what do we need right now?" or "what does the house need right now?" while I am out running errands. And then I end up thinking of things we don't necessarily need (now) or putting myself in situations where I find irresistible bargains...  So I am working on that.

I have also started seeing a new shrink. My old shrink just didn't challenge me! Also, he is close to my old office but not close at all to my new one. The new woman is in Raleigh, and sees patients on my day off, so I hope that she will work out.

Mountain house: I would be lying if I didn't say that in all the difficulty of being in and dealing with the mountain house (where Todd's dad lived, he passed away in August...) it also has been a lot of fun to clean, straighten and organize the house into a place of our own. We have been going up there about once a month. We both really like it. It is so enjoyable to be there.

Doctors, yoga and exercise

I had my check up after 3 weeks of IV antibiotics almost three weeks ago. At that time, I was definitely feeling better. All of my symptoms - including my pesky low oxygen numbers! - had come back up to a reasonable place. My pulmonary functions, however, were not as cooperative.

Below you can see how my PFTs trended up over the course of my IV treatment from Aug 29 to Sept 18. (I started keeping track of some of my medical stats in a google spreadsheet and it allows me to easily make nifty graphs like this.)

My doctor was a little disappointed but I wasn't surprised at all. As you can see, I had been tracking my PFTs pretty closely at home, and what I scored at clinic was on par with what it had been - which is still more than 20% below my baseline. *sad face* The course of action was to keep my Prednisone at 20mg for a prolonged period of time, and exercise exercise exercise. And go back in one month.

I have been keeping up my end of the bargain! I have exercised 11 of of the 17 days since my appointment - swimming, walking, elliptical, even yoga! And I have done so in a mindful way with respect to my back issues, which will always be with me creeping up from time to time.

So yes, last week I went to yoga class for the first time in about a year and a half. It was a huge milestone for me. And I went to another one tonight at a new studio. Both of the classes were restorative classes (also called yin yoga), which means mostly passive positions to let your muscles and soft tissue release tension. Very relaxing and, well, restorative. It's a far cry from my cardio-workout flow yoga classes that are my real love, but you have to start somewhere. Baby steps. I used to hate baby steps but I am seeing their value in my wise old age.

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.

Cutting back

I've been really lucky in that Prednisone has never had the "monster" effect on me - except for maybe a few times when I was on a really high burst. And even then it mostly manifested as having a lot of extra energy (i.e. an extremely clean house!)

Some history: During 2008, my lungs took a pretty big dive. Part of getting my lung function back - which turned out to be an incredibly long process - was adding Prednisone to my routine. It worked really well for me. Almost, it turned out, a little too well.

I say this because it's not uncommon for cystics to do a burst of Prednisone during an exacerbation - they'll start as high as 40 or 60 mg/day and taper off of it in a week or so. My problem was I responded so well to it that I was never able to taper off completely. I've tried though! Part of me starting allergy and Xolair shots in 2009 or so was to try to get me off of the oral steroids. I'm sure the shots have helped, but not enough to get me off the Prednisone.

I've spent a large amount of the last four years on 10 mg a day. This isn't a terribly high dose, but ideally I'd be somewhere around 5 mg. I honestly don't think it's realistic to be off it entirely. But steroid use does not come without consequences: Long term use is not good for your body - steroids depress your immune system and contribute to bone loss. That's especially bad for cystics because we have a predisposition to bone loss as it is from our malabsorption issues. I was diagnosed with osteopenia (a stage of bone loss less severe than osteoperosis) before I even started Prednisone.

So, since I have been feeling so awesome lately and I'm in an 'exercising like crazy' stage, I thought this was the perfect time to try to taper down. This happened in several steps - each one would make my body feel like total crap for at least a day - and the result is that I am now down to 5 mg! I am so happy and really proud of myself.

So far it is going well. I do notice a little less intensity of being able to exercise, but I'm hoping I can build that up in time. Go me!

Home Stretch

Mom with Dr. Comstock - er, Dr. Clooney - at her appointment this week

I would be lying if I said I haven't been really down and missing Todd the last week. I am ready for him to be home. I feel so disconnected from him having not seen him for two weeks and only talking briefly on the phone every other day or so.

At first I was engrossed in making the best of "the single life" - and, truthfully, I do fine by myself. I enjoy alone time, it's nice to not have to plan for or think about other people... but it does get lonely.

I was also not looking forward to this loooong weekend during which most people will be out of town or are doing fun stuff and I have no plans. I do, however, have one very fun house project planned: painting my office purple! It's going to be a lot of work but I have three days to do it. If I finish the walls I also have two bookshelves I want to paint. Stay tuned.

Me update: leg is doing about the same, which is to say continuing to get better. Had a (painful!) massage this week and it helped loosen things up and I subsequently had my best adjustment yet afterward.

The run-down feeling from last weekend fortunately didn't escalate to anything. yay!

Had a dental cleaning this week and I'm going to need my first crown. boo! I think the cause is actually the way that I hold my nebulizer cup in my teeth - go figure.

I was really dreading my pulmonary appointment on Thursday because I haven't been able to exercise like I want with my sciatica. I kind of got let off the hook, though. I did my PFTs and then my doctor had to run somewhere for some kind of emergency, so we agreed to talk on the phone in an hour or so.

The basic story with my lungs right now is that they are fine (FEV1 46%, up from 43% last time, which was down from 49% previously.) Not awesome, but the numbers are ok at least. (I exercised right before and I really think that made a difference because I checked them the night before at home and they were only so-so.)

I have been coming down sloooowly off of a Prednisone taper since my last appointment three months ago and I haven't been able to get lower than 7.5 mg/day. I have gotten down to 5 before when I was feeling good - which is a daily amount I am comfortable with. (Let's just say my mom's hip-replacement surgery has inspired me to really try to take care of my bones...I already have osteopenia and I'm only 32!)

I just don't understand why my allergies/asthma could continue to be an issue with all of the stuff I am on for it! Just to review:

• Advair 500/50
• Singluar
• Allegra
• Prednisone
• Allergy shots
• Xolair shots

I seriously feel like we are throwing everything at it and it's still not great, which is very frustrating. We talked about a few things to try: upping my Prednisone temporarily, having me do a bronco-dilator before my treatments, and, possibly, trying an inhaled medication for emphysema that is being used for some CF patients. (Spiriva.) I'm going to try to get some samples next time I'm in clinic. Dr. C says he has another patient very similar to me that has done well on it. Leave no stone unturned...

We also talked about my continuing to be on coumadin... ugh. He thinks I should go off of it and is going to see if the hematology folks can get me in any sooner than the end of August. He said that I am a unique situation in the clinic, that there aren't really other patients they've had in this situation. That seems crazy to me because a lot of CF patients get ports and some of them must get clots. But the majority of clots they see are with picc lines, which are removed, so they don't continue to have the foreign body in them. So it is a whole different ballgame.

And lastly, I may participate in a trial for a new inhaled antibiotic for CF: levofloxacin - it is in the same family as Cipro. Very cool that we may soon have another inhaled antibiotic for CF!

My mom continues to do well although she's been a little down since getting home. I'm not sure why, I think she is just processing all that has happened - it's a lot! The picture above is from mom's appointment this week, her 3-week follow up, which went very well. Her doctor is not only awesome with exquisite bedside manner, but also very handsome - so we asked to take his picture. :)