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!!

Back to the Taj Mahal

After six months away I'm back at Clarian North Hospital (aka the "Taj Mahal"). If you've got to go to a hospital it doesn't get much better than this. The private rooms are well decorated and have fancy irridescent tile in the bath, art glass lighting over the bed etc. The food is good, ala carte and available almost 24/7 with one quick call downstairs. Oh and did I mention the in house spa services??? Today I got a pedicure and tomorrow an hour massage all in the privacy of my own room.

 

Lest you all think I'm here living the high life...here's a quick update on where my health status is. I've still been dealing with the illness mentioned in my last post. This illness is marked by a shortness of breath and pain in my lower left side. The pain is worse when I inhale. There are several possible causes:

1. I have a cracked rib.
2. I have an acute area of infection in my lungs that is possibly a bacterial pneumonia that has somehow created related pain.
3. I've developed a pleural effusion related to #1 and/or 2 above. http://en.wikipedia.org/wiki/Pleural_effusion

My bet is on #3 caused by #2. Basically a pleural effusion is an accumulation of fluid between the sac surrounding the lungs and the lung itself. This causes a rubbing of the tissues and a temporary loss of usable lung capacity. The "rub" causes pain on inhalation and shortness of breath which are my main symptoms.

What then is a girl to do??? First, the excess pleural fluid can be drained from the pleural cavity via a chest drain. Second the underlying cause of the problem must be treated. So right now I'm on IV antibiotics to get rid of the bacterial pnuemonia (item #2 above).

Hopefully this all can be resolved so I'm ready to get outta the "Taj" no later than Saturday morning. After all I've got a VIB event to attend - VERY IMPORTANT BEER TASTING. For those of you that haven't heard the 10th Annual Festiv-ale Beer Tasting is this Saturday from 3-7pm in Opti Park Broadripple. Please come and have a beer with me and help find a cure for CF. Purchase tickets on-line at http://indiana.cff.org/festivale09 or call the CF Foundation office at 317 202-9210.

That's all for now. Hanging in there and will try to post again soon with my latest status update.

Thanks for listening!!!
Steph

Prednisone high prompts my first blog :)

Nothing like waking up at 5ish with tons of thoughts running through your head thanks to the prednisone steriod boost.  Now I know why Grandma kept writing all those emails at 3am last fall. Last year about this time she was on high doses of steriods to reduce her brain swelling and keep her "functional" as long as possible.

Grandma was diagnosed with a brain tumor in July 2009. She chose not to fight it. My uncle Jim died of the same type of tumor a few years earlier. Grandma selflessly took care of him for the last year or so of his life. She never hesitated to move temporarily to Atlanta to do so. I'm sure seeing him struggle against his terminal tumor made her decision much easier. I also know she had also been ready to join Grandpa for a long time.

Grandma's death had a huge impact on me. Sure it's been hard losing my last grandparent. But it goes a bit deeper than that. We lived with her & Grandpa for four years after my father died (when I was 4). She and Grandpa were like second parents to me. Not to slight my mom is and always will be the greatest mom and friend a person can have!

Grandma's death also made me come to terms with many aspects of my own health/life & death perspective. See I constantly go through ebbs & flows of thinking "I'm superwoman and can do anything regardless of having Cystic Fibrosis and being 3 years past the average survival rate. I can run circles around the rest of you normal people." and "Oh no I've got 20 gazillion things on my plate and now I'm sick and this sucks because I now I have to take off my superwoman cape for a bit and admit I'm sick to the rest of you normal people and hope that you can comprehend what it means for me to be sick." To my own detriment when I'm sick it's usually a bit more than just a case of the sniffles. I often worry about people who don't understand my disease fully and might think that I'm slacking somehow. Clearly I look normal so could I really be that sick so often? So to counterbalance this perception I often try to keep up with the normal peeps until my health gets in crisis mode.

Since January 2008 crisis mode has been happening more often than I might like. I've had four hospitalizations, two surgeries, and been on IV antibiotics four times. My FEV1 is down to 0.89L and FVC is 1.71L. Compared so someone my age/size my FEV1 and FVC are 26% and 41% of normal. FEV1 and FVC are basically measures of lung capacity. Clearly with these stats I am physically not superwoman. Although she does have a smoking hot outfit that my bony ass would probably look decent in with some padding in the upper chest.

Back to Grandma. So her death prompted me to take a long hard look at my own life. No matter how hard I tried to keep up with work my health kept failing. Even on a reduced schedule of 29 hours a week I never had the energy to keep doing quality work and take care of my health. Although 29 hours does not seem like a significant reduction, as a tax manager in public accounting 60-70 hour weeks happen often during our busy season. Even off season sometimes you're lucky to work only 40. After a hospitalization in March it came time to face the facts. Either stay healthy or stay working. Unfortunately these had become mutually exclusive propositions. "Retiring" (aka going on disability) was an extremely difficult decision to make for my alpha female superwoman self. My career has always given my a great sense of achievement and I've loved the mental challenge of it. So it was a big leap to give up such a big part of my life. The kicker that made it easier was thinking of Grandma. First she always told me "you work too hard, take time to smell the roses!!!". Of course I didn't want to ever tell her that some of my hard work was a learned behavior from several generations ;) I also though of how wonderful her last few months had been from diagnosis to death. She got her "chinese massages" sans "happy ending" almost every day. Ate tons of orange freezes, soup and whatever her heart desired. And most importantly she got to share her feelings (both positive and negative) and say her goodbyes to all she loved. Would I be honoring her if I kept pushing myself and didn't get the chance to do the same???

So here I am today managing another illness. Thankfully superwoman/pig is getting better!!! Since I'm not working I actually have time to allow myself to be sick and take long luxurious naps when needed. Although being superwoman/pig I'm feeling a bit guilty about taking a haitus from my Cystic Fibrosis Foundation Festiv-ale beer tasting chairperson duties. But to be true to taking care of my health first, I must get over this too for now. Eventually I'll get back to volunteering, back to pulmonary rehab, back to yoga and back to my superwoman/pig self...eventually.

Well for being my first post it was a bit longer than intended. But it should be an interesting ride for those that wish to keep up. I'll try to get the word out soon.

Thanks Grandma!
Love Steph

P.S. more to come on the pig thing.