Merry Birthday New Year!

Simon!

Reading over my last post, I realized that it has been almost exactly three months since I last blogged. I had just been to my quarterly CF clinic check up, as I have again last week. The clinic visit went well!

• PFTs (pulmonary function test) were up - again! And my FEV1 (a particular measurement most looked at by CF docs to tell the condition of the airways) was the highest it has been since 2007.
• Since I was having some trouble on my experimental "off" months of inhaled antibiotics, we decided that I will only go 2 weeks off - it is still good in the long run to have some kind of break.
• Finally got some samples of Spireva, a COPD medication that some CF patients have had success with, so I'm excited to see how that goes. There is both a theoretical benefit and a theoretical drawback for this medication with CF so we'll just have to see.
• I didn't end up getting on the blood pressure medication because basically all of my readings at home are fine. I am happy about that.

I have to say, I was surprised my PFTs were up this visit. Let me tell you what happened. Last visit I was 50% and I had been exercising like crazy (literally, daily) for about a month. Symptomatically, I was also feeling great.

This time, my first attempt at blowing (doing PFTs) I got 51%. Blew again and I was 51%. The third time I was really trying for 52% but made it to 53%! Now the norm is to blow three times, as long as your numbers are consistent, but the technician wanted me to give it one more try to see if I could go higher. (For me, it's usually diminishing returns after 3.) I did and - wala! - I hit 54%.

Such is life with CF. Last visit, exercising like crazy, 51%; this visit, been more slack and doing less rigorous stuff (more walking), and I hit 54%. Could be the time of year (fewer allergens in the winter), could be just the randomness of CF. Who knows.

So that was clinic, now let me catch you up on everything else that's been going on for the last three months!

Some Cool Trips:

• Went to Cleveland for Thanksgiving with Todd to see my dad and family there. We had a great visit! Went to a minor league hockey game, drank good beer and ate good food. Oh, and on our way into town we went by the Christmas Story house (the house where some of the movie was filled is in Cleveland.) Above is us with the famous leg lamp.
  

• My mom and I flew up to Michigan for Christmas to see my brother and his family. It was incredibly awesome seeing sweet little Simon (my then 4-month old nephew)... at the end of our trip, we all went to Detroit for the night and Nate and I went to a Red Wings game at Joe Louis Arena! That was very cool. A great Christmas gift from Nate and JoEllen. :)
  Above, me holding Simon, in his coat of many colors.
  
• We are getting ready for a trip out west in about two weeks. We are going to Vegas with some friends, but are flying out early to visit Joshua Tree National Park in California and go see my friend who lives near Anaheim. AND! We found out that the Carolina Hurricanes are playing the Anaheim Ducks the very night that we are going to be in town. So that is very cool. We are going with my friends.
  (p.s. - I'm usually not as much of a fanatic about hockey as I have been the last few months going to all these different arenas. It has just worked out that way.)

A (hopefully) Short Update on my Sciatica/Herniated Disc:

Things have improved quite a bit since three months ago. At the time, I was having daily fluctuation in my pain level, but overall still a lot of discomfort. I went along like that for a while. Then over Christmas (no doubt partly because of carrying around my precious nephew so much! and lots of standing and sitting in hard chairs) my leg got way worse. So I decided to get a third steroid injection in my back (I was allowed to do one more before March.)

That went really well and helped a lot. I babied my back after that really trying not to lean and bend as much as possible. I've also been incorporating some other things I feel have helped over the last several months.

The other thing that I tried, and I actually started this before Christmas, was seeing an acupuncturist. I went to this woman who was highly recommended to me, but unfortunately didn't have much success with her. So I started seeing someone else last week. I hope that will be a more fruitful relationship.

Doc on spa day

This was a good weekend: Friday we went to an awesome Hurricanes game (they beat the #1 west-coast team 3-0!), had two good walks with the dogs in the brisk fall weather, and got to sleep in two days in a row! Tonight Todd's dad and aunt are driving here for a Monday appointment and I am cooking dinner for them and having my mom over, too. Looking forward to that.

In dog news, the boys got their second bath/hair trim of the year this week! They looked so adorable and were kissably clean. :)

In cat news, one of my cats (Diosa) has decided that she doesn't like jumping all the way up on top of the entertainment center to eat. (The food is there so that the dogs can't reach it.) So she sits at the foot of it and meows pathetically for some kibbles. It seems like she spends her days asking for either food, catnip, or to be let out! In her defense, she is 11 or 12, is somewhat visually impaired, and has never been the most coordinated of cats. All this is to say... we knew this day was coming. :) Hopefully we can find a solution to this problem soon.

In human news, I had a good CF clinic appointment this week. The highlights were:

• FEV1 was UP
• Decided to start taking a month off of my inhaled antibiotics in between cycling
• Started on medicine for high blood pressure, which I have (mysteriously?) developed over the past few months or so

My lung functions being up is no doubt a result of my almost daily exercising lately. I have been careful not to irritate my back (which by the way is doing poorly again - more on that in a minute) with pretty good success. It is so nice to be able to do something to feel in control of my disease. And nice to see results both in the numbers and in feeling clearer every day. Exercising really does seem to make my lungs work better. My doctor says that exercise is the most important therapy that we have.

The change in inhaled antibiotics is a BIG deal. I have been constantly rotating two antibiotics for three or four years. When I started doing this, it was because I was in the middle of a rough period of infections that I was having trouble coming back from. Because of this we wanted to do everything to prevent further decline.

Now, in light of just having finished an inhaled drug study in which I was off inhaled antibiotics for either two or three months, and the fact that I did really well, has led us to reexamine our strategy. Since the effectiveness of inhaled antibiotics decreases over time, hopefully using them less will make them effective for a longer period of time.

One interesting thing, and something I have myself thought for a while. My doctor says that while there are no studies to prove it, he suspects in the future CF patients will be rotating more antibiotics. Like, Cayston one month, then Tobi, then Colistin, then (the upcoming) levofloxicin, possibly with a month off in-between...so that your bugs are seeing different classes of antibiotics all the time. He said that he is not opposed to me trying this now, if I am interested. So I just may!

My high blood pressure is possibly the result of being on daily Prednisone (but I have been on that for years, so I don't see why now would suddenly be a problem), possibly because I am taking Aleve daily because of my back, or possibly another reason. I think that both of my parents are on or have been on meds for this, so I may be predisposed to it.

Anyway, I would by lying if I said it doesn't bum me out. Another freakin' thing to deal with. But it seems to be relatively minor. And if Aleve is the culprit, well, I won't be on that forever.

The deal with my back is that the first two steroid shots really helped. Then, the evening after my follow-up appointment for that, my back got irritated with a bike ride and was increasing bad the next week. I am back to having more regular pain and taking 2-3 Aleve per day and on top of that I am taking the tramadol pain medicine they prescribed regularly me for the first time.