If pigs had wings...away they'd fly!!!

In honor of National Pig Day (March 1st), I'm finally getting around to explaining this pig thing.

To be honest I'm not 100% sure where it all began. One of my favorite childhood books is Charlotte's Web. I loved the fact that Wilbur the pig escaped his destiny and lived a long life. Maybe even then I knew something would be extraordinary about my life (both good and "bad"). Other pig moments included appearing as one in a 3rd grade play and getting a card from my Grandma addressed to Stephie Piggie Dickie. Ever since getting that card the pig thing has taken on a life of it's own. Now I've gotten so many pig gifts that occassionally duplicates are received.

Of course pigs are so cute and I'm sure that's part of my interest in them. However, the real magic is in the concept of the flying pig. I really fell in love with flying pigs back when comedian Heywood Banks sang "If pigs had wings...away they'd fly". If a vertically challenged pig might get lucky enough to grow wings and fly maybe there was some hope for me.

Having CF has made me both vertically and horizontally challenged. A pig is limited by it's weight and girth. I'm limited by my ever declining lung capacity. If a pig can grow wings then maybe I can make it till I get wings of my own. My wings would be in the form of a double lung transplant. How wonderful it would be to fly or even just run a block. Someday hopefully the dream will be a reality.

Of course there is no guarantee with a transplant. So until then I'm trying my best to get by with my lungs for as long as possible.  This has gotten more difficult over the last few years. I'm sick more often and have less energy than before. But I'm still as determined as ever :) . I just walked a slow six miles today and start a yoga training program tommorrow. Maybe this pig does have wings...

Happy Pig Day!!!
Steph

Soul Vacation

Getting back into the groove after a week of grooving. Confused yet? Wasn't I just posting about being in the hospital? How on earth could a hospital be considered "groovy"?????

I was sprung from the Taj on Tuesday December 29th after a nine day stay. I had hoped to get out much sooner but a few glitches and an unexpected bronchoscopy kept me in a bit longer. Didn't get home for Christmas but did for New Year's Eve and more importantly Jam Cruise!!! Jam Cruise is a charted music cruise that we have been doing annually for the last six years. It's six days packed with live music, costumes, great friends (some which we only see annually), and one of the best times we have all year. Far be it from me to let a little pneumonia get in my way of having a good time ;)

It was a very difficult decision whether to go or not. Our flight was on Jan 2nd and therefore we only had a few days to prep for the trip. Not only that but I was still finishing up IV antibioitics and needed supplemental oxygen after I got discharged from the Taj. Obviously my body was not in the best shape for travel and six days packed full of non stop action. As I thought about going I kept remembering all of the old people with COPD that take cruises because they are very handi accessible and can be restful. In the end I decided (and reassured my mom multiple times) that six days on a cruise ship might be the best place ever to get well. Thanks to some quick action on my part and help from my various medical providers, I went on the trip with a portable oxygen concentrator and finished up my IVs the night before we boarded in Ft Lauderdale. I had every drug, piece of equipment, etc. that I could possibly need, so everything that I could do at home I could do on the ship. Of course including costumes etc this put at us two 50lb checked bags, two roller carryons, a backpack, and the portable oxygen concentrator. Of course I'm a bit of a clothes horse so the medical stuff can't be blamed for all of it ;)

The first part of the trip was all about me not being too proud to admit I was struggling. At the Indianapolis airport I asked for wheelchair service to help keep myself rested. It made things so much easier especially getting through security in a relaxing way. Friends picked us up in Ft Lauderdale and we headed to our hotel for the night. The hotel was packed full of Jamcruisers and it was great to catch up with so many. Everyone was so supportive and it made my wearing of oxygen in front of them so much of a non-issue. My friends we just happy to see me and vice versa. I also made things easier on us by "cutting" in line getting on the boat. The Jam Cruise and MSC cruise staff made my boarding process a piece of cake. Thanks!

Once on the ship my top priority was health first. I was very strict about completing all of my treatments, getting enough rest, etc. While this meant I missed out on some of the music etc., I learned that I enjoyed the times I did get out and about much more because I felt better :) Listening to my body really paid off this time. Every day I got better and was able to do more. And because I was able to do more (dancing, walking etc) every day I felt better!!! By the end of the cruise I was off oxygen (except while sleeping for a safeguard), and even did yoga the last day. YIPPEE!!!!!

Now I'm back home and reintegrating into my "normal" life. Whatever that is. The love of my friends, the fun, the music, the salt air, and the experience gave me just what my body and more importantly my soul needed...a vacation. Thanks to all who helped make it possible and to my family, friends, and doctors who supported my decision to go.

Now off to my workout. My next adventure is training for the Mini-Marathon in May. Who knows if I'll finish it but it's more about the trying than anything.

Peace,
Steph

Ho, Ho, Hospital???

Well it certainly has turned out to be a December to remember. That head cold I mentioned last post got quite a bit worse. Probably a flu but no official diagnosis yet. I've had three days straight of fevers in excess of 102. The highest was 104.5 and ibuprofen wasn't keeping things under control. Thankfully my wonderful nurse/mother helped my through a long delirious night by making me ice my neck. You know you're in trouble when sleeping upright on your couch using a bag of ice as a pillow is comforting.

After two nights of ice pillow snuggling my fever finally broke this morning. However, I was so exhausted and congested that I finally threw in the towel and checked in to Clarian North Hospital (aka the Taj Mahal). I'm pretty tough but realized that the best way to get better fast and effectively was to have 24/7 intensive therapy.

My master plan is to be out by Christmas Eve. We are still hoping to host Randy's parents and have a fun and relaxing holiday weekend. Also, I need to be in good shape for our annual music cruise in Jan. We leave in 13 days...YIKES. Thankfully all my exercise recently is helping me get through this episode better than I would have expected. Of course Randy & my mom have been amazing and I can thank them both enough. Yes Hillary it does take a village :)

If you've called me, emailed me, facebooked (verb?) me, etc lately I probably have not responded yet. Frankly my energy/focus is shot to heck. So this is the quick and easy way to keep you all up to date.

Will post more frequently this week. Hope you all are having a wonderful holiday.

Love,
Steph

Hey Debbie I'm still alive and doing well...sorta kinda

OK it's been a while since I posted. Not only do I know this in my heart but also because my aunt Debbie let me know via my uncle John that I needed to update my blog. So this update is for Debbie with lots of love.

Yep as the subject line says I'm still alive and actually doing well...sorta kinda. I felt great yesterday. In fact it's probably the closest to "normal" I've felt for a while. In October my oxygen saturations were not where they should be and I started using supplemental oxygen during exercise or while doing things around the house. A normal person should have an oxygen saturation above 90% even during strenuous exercise. However, mine went down into the mid 80s with exercise. At rest it was above 90% but my heart rate would be above 100. So using supplemental oxygen was a way to give my heart a rest while recovering.

Mentally going on supplemental oxygen is not an easy thing to do. For me it is an indicator that the progression of my disease is accelerating. So what to do? Give it my all to reverse the way things were headed. I decided that December would be my month to do some hardcore rehab. So the last few weeks I've been hitting it hard almost everyday and trying to increase my exercise tolerance each time I work out. And the great news is that my December to remember has been as success!!! I'm not using oxygen at all right now...WOO HOO!!!

So if I'm doing so great what's this "doing well...sorta kinda" stuff? Even though yesterday was great, I woke up in the middle of the night with a killer sore throat and major stuffed up head. Looks like the cold & flu season finally found me. Hopefully I can get through it quickly and back to my workouts. For now I'm enjoying chicken soup lunches with my sweetheart and hoping for the best :)

Love,
Steph

Writer's block

OK. I've been out of the hospital for over two weeks and am finally getting the blog updated. Not sure why it's taken me so long but a few ideas:

1) too busy catching up on the mundane household stuff, dr's appts, getting back into a routine, etc
2) too much obsessive internet shopping due to the prednisone. Thankfully most of it was stuff we "needed".
3) overwhelmed by the amount of stuff I wanted to cover in this update so procrastination set in.
4) it's taken me this long to really feel like my old reasonably healthy self again.

I'm in the process of getting myself in shape again. Was able to do slow yoga x2 this week and go to pulmonary rehab once. YEA!!! Right now I'm on Tobi (an inhaled antibiotic) and a very low dose of prednisone.

We are off to a wedding this weekend of some close Jamcruise friends. Can't wait to see them all!!!

FYI Festiv-ale was a great success. Thanks to all for your support :) Pictures etc will be posted soon.

Peace,
Steph

Still in the hospital...Festiv-ale Beer Tasting tommorrow

Still in the hospital...but will be at Festiv-ale tomorrow even if I have to get a special pass from the hospital :). You can buy discount tix at Kahn's Fine Wine & Spirits until tomorrow @ noon. They are at 53rd & Keystone Ave. If you can't attend please consider donating to help cure this disease and help extend the lives of all my much younger CF cohorts. You can donate on-line at http://indiana.cff.org/festivale09



I'm getting better every day but it is a slow process and I am an impatient or should I say inpatient woman. My pleurisy/pneumonia is getting better every day. Still coughing up a decent amount of stuff every session with the respiratory therapists (3 times per day). Hope to get released from the hospital by Sunday but you never know. My docs & I have decided just to take things one day at a time. The most important thing is that I get really cleared out before I return home. If I'm not discharged tomorrow AM, Dr. Goodman will get me a pass so I can leave to attend Festiv-ale.

It's very important to me to go to Festiv-ale for several reasons. The one single most important reason is to share my story about living with CF. I do this not for the limelight (although I must admit it is fun speaking) but rather to help save the lives of those much younger than me. You see their lungs are much healthier than mine and they might actually have a chance at a more "normal" life if we can get them the best meds possible. I really don't want them to go through what I am/will go through on the road to an eventual transplant (most likely). My lungs are pretty trashed but hopefully I can keep things going until 50 and then get a transplant. OK maybe I'm an eternal optimist but what the heck ;)

Another reason for attending the event is to thank all my family, friends, CF staff, committee members, sponsors, brewers, restauranteurs, attendees for all the help this year. It's been quite a bit of planning in a short amount of time and you all have been so wonderful!!!

My last reason to attend is purely selfish. I love a good party and I love beer.

Cheers and see you all tomorrow.
Steph

Pleurisy confusion

Met with my pulmonary doctor this evening after I posted the Taj Mahal post. Well it seems that my self diagnosed pleural effusion is really pleurisy. I guess no amount of internet research can really substitute for the knowledge & experience of my main man Dr. Mason Goodman. He did a great job of explaining the difference.

Pleurisy is inflammation of the lining of the lungs that causes pain when you take a breath or cough. When you have pleurisy, the normally smooth lining of the lung (the pleura) become rough. They rub together with each breath, and may produce a rough, grating sound called a "friction rub."

Bottom line is I have a pneumonia with affiliated pleurisy. However I do not have a pleural effusion as my X-ray did not show any fluid on the lungs. So the plan is to stay on IV antibiotics and treat the pain from the pleurisy with pain meds.

The good news is that I hope to be out in a couple of days. It's looking good to be out for Festiv-ale and I may even be out as early as Thursday afternoon.

YIPPEE!!