Many say the path to transplant is a long and winding road. Right now for me it feels like a roller-coaster. Just after Thanksgiving I was evaluated for a lung transplant at Duke Medical Center. It was a crazy and exhausting week of many tests. The surgeons felt I might be too early for transplant. The transplant pulmonologist said it might be time to get listed. I expected somewhere in between. My husband Randy & I returned to Indiana prepared that we might be leaving home again soon. We knew that when it was time to get listed that we would be OK with it even if our time on the transplant road was shorter than expected. Although in reality I’ve been on this road since my first evaluation in 1992. So I guess that’s a pretty good trip!
Right after we got home I noticed that my output (aka poop) in my colostomy had stopped. After trying many things at home, my physician told me to go to the emergency room so they could get a CT scan of my abdomen. This scared the heck out of me. I had surgery in May 2010 to resect a blocked small bowel portion. It resulted in a month long stay part of which was in ICU on BiPap assisted ventilation. I really wasn’t sure if I could do it again.
Just as we were getting ready to leave for the ER, Duke called. The transplant coordinator told me the news I least expected. Duke rejected me as a transplant candidate. I was shocked. I failed to meet their criteria due to esophageal aperistalsis (dismotility) and reflux. I felt like someone punched me in the stomach and drained all the blood from me simultaneously. I’ve worked so hard to stay on this journey and now a road block had suddenly appeared.
Luckily my bowel obstruction was only partial. I spend the next day curled up on the couch in some pain as the obstruction passed. My mom spent the day with me as we both dealt with the emotional turmoil over my rejection by Duke. Lots of tears were shed and by the end of the day we felt not exactly better but at least emotionally numb enough to deal with it.
By the next day I decided that curling up in a ball would not work as a life strategy long term. So I set about to find a solution to my problem. I put posts on nearly every CF and transplant forum and Facebook page I know. After checking far too frequently I finally got a good hit. A woman named Irene had been in a similar situation two years ago. She ended up at University of Pittsburgh Medical Center (UPMC) and suggested I message her so we could get connected. This meant the world to me and gave me hope again. A few others replied as well. It’s such an amazing thing to be able to find someone to talk to on an issue that is so narrowly focused (thank you internet!). Ilene and I talked a few days later. She answered so many of my questions and reassured me that UPMC might be a viable option. Her openness about her journey and willingness to help others along the transplant road make Ilene a great resource for others. We could use many more Ilenes in this world.
After talking to Ilene, I decided it was time to start contacting other centers. Hubby Randy said “Hey now you have another project to work on.” He knows me well enough to know that I need to be engaged in activity to keep sane. So for now I have been calling, faxing, and emailing various centers to find a good fit. I’m hopeful again and have faith something will work. I’m back on the road again and it feels good!
Friday, December 21, 2012
Friday, August 31, 2012
20 Years & Tasty Beers
It’s that time of year and it’s time to
think beer. Since it's inception in 2000 I've been the chair of the Festiv-ale beer tasting event to benefit the Cystic Fibrosis Foundation. Each year is great but this year’s event is really
special. This year I celebrate a milestone.
20 years ago this month I almost lost my
life to CF. One morning I woke up and felt like there was an elephant on my
chest. I had a serious pneumonia and was in right heart failure. At one point I
was too weak to even walk from the car to the house and needed to be on oxygen
24/7. My only option was being listed for a double lung transplant. However, at
that time a new drug called Pulmozyme was in clinical trials funded by the CF
Foundation. It gave me hope. I exercised to gain strength for transplant but
also in hoping I wouldn’t need one. I was lucky. It worked. Just two years
later I started Pulmozyme, was off oxygen, and was taken off the transplant
list.
Now twenty years later it feels like the
movie Groundhog Day. Once again I’m about to be evaluated for transplant. Once
again I’m using oxygen (at night and with exercise). Yet once again there is
hope. The new hope is a new drug VX-809 from Vertex Pharmaceuticals. They are
enrolling for stage 3 of a clinical trial funded by the CF Foundation. Vertex
recently released a drug called Kalydeco. It is saving lives for people with
the G551D genetic mutation. However, the vast majority of those with CF
(including me) have the Delta508 mutation. The hope is real and it’s only a few
years away.
Festiv-ale is about tasting beer, but it is also about
raising a glass to help raise money to support this research. Join us on
September 22nd. We will be celebrating beer and we will also be
celebrating life. Hopefully for another 20 years.
Tickets are on sale now for $45 and can be purchased by calling the office at 317-202-9210 or at http://indiana.cff.org/
Thanks and Cheers,
Steph
Festiv-ale Chairperson
CF Adult
RSVP on Facebook: http://www.facebook.com/events/455436567823344/
Follow us on Twitter: @FestivAle_CFF
Friday, August 3, 2012
Eye of the Tiger
Cue the cheesy song “Eye of the Tiger” by Survivor from Rocky III:
“Risin’ up, back on the street
Did my time, took my chances
Went the distance, now I’m back on my feet
Just a man and his will to survive
So many times, it happens too fast
You trade your passion for glory
Don’t lose your grip on the dreams of the past
You must fight just to keep them alive
It’s the eye of the tiger, it’s
the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
stalks his prey in the night
And he’s watching us all with the eye of the tiger”
So many things in this song remind me of the ongoing battles we have with CF. We “go the distance” each and every time we have an exacerbation. For Rocky it was the “thrill of the fight” that kept him going. Like Rocky winning against CF is a motivator for us to carry on. Other times we have to reach deeper to keep up the fight. Maybe a loved one or upcoming life event keeps us going. Otherwise we rely simply on only our “will to survive”. Regardless of motive, the important thing is that we just keep trying.
Recently, I’ve been struggling with motivation. My workouts have been sporadic and not well thought out. Consequently, my energy and strength are down and my oxygen use is up. To be honest I’ve been lazy. This is not my norm. Usually I’m running at 110%. My first instinct is to blame CF and think maybe it’s time for antibiotics or other medical intervention. But a trip to my pulmonologist revealed that my lung function is stable and I’m doing relatively well. This trip brought me to the realization that it’s time for ME to make MYSELF feel good. It’s time to get back the “eye of the tiger” and get serious.
So I recently started a six day a week exercise program. My program includes yoga, pulmonary rehab, and weightlifting. I made several spreadsheets (yes I’m an accountant by trade) to chart my progress and keep me on track. It’s been over a week and already my energy level is up. I’m also sleeping more soundly. My muscles are tightening and my lungs are loosening.
Ask yourself if you’re doing all that you can. If not don’t feel bad. Recognize that maybe you need a mental holiday from it all once in a while. However, don’t stay on that holiday too long. Rocky didn’t quit and neither should you. Rise up to the challenge of our rival CF!
“Risin’ up, back on the street
Did my time, took my chances
Went the distance, now I’m back on my feet
Just a man and his will to survive
So many times, it happens too fast
You trade your passion for glory
Don’t lose your grip on the dreams of the past
You must fight just to keep them alive
It’s the eye of the tiger, it’s
the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
stalks his prey in the night
And he’s watching us all with the eye of the tiger”
So many things in this song remind me of the ongoing battles we have with CF. We “go the distance” each and every time we have an exacerbation. For Rocky it was the “thrill of the fight” that kept him going. Like Rocky winning against CF is a motivator for us to carry on. Other times we have to reach deeper to keep up the fight. Maybe a loved one or upcoming life event keeps us going. Otherwise we rely simply on only our “will to survive”. Regardless of motive, the important thing is that we just keep trying.
Recently, I’ve been struggling with motivation. My workouts have been sporadic and not well thought out. Consequently, my energy and strength are down and my oxygen use is up. To be honest I’ve been lazy. This is not my norm. Usually I’m running at 110%. My first instinct is to blame CF and think maybe it’s time for antibiotics or other medical intervention. But a trip to my pulmonologist revealed that my lung function is stable and I’m doing relatively well. This trip brought me to the realization that it’s time for ME to make MYSELF feel good. It’s time to get back the “eye of the tiger” and get serious.
So I recently started a six day a week exercise program. My program includes yoga, pulmonary rehab, and weightlifting. I made several spreadsheets (yes I’m an accountant by trade) to chart my progress and keep me on track. It’s been over a week and already my energy level is up. I’m also sleeping more soundly. My muscles are tightening and my lungs are loosening.
Ask yourself if you’re doing all that you can. If not don’t feel bad. Recognize that maybe you need a mental holiday from it all once in a while. However, don’t stay on that holiday too long. Rocky didn’t quit and neither should you. Rise up to the challenge of our rival CF!
Monday, July 23, 2012
Living the dream
Considering it's been a year since my last post I suppose it's time to catch you up on what's up with me. Lately a lot has been up. But first let me digress to last year. As many of you may or may not know the beginning of 2011 was filled with several hospitalizations including another abdominal surgery. After all that I declared the rest of 2011 to be a year of recovery for both Randy & I. It was a time to stay close to home and rest. It also gave us time to finish projects on the house and get our lives back to some sense of normalcy.
Feeling rejuvenated I began making plans for 2012 or what is know known as "the year of the Rath's". My goal for this year is to see many of our friends far and wide. I do this also as a way of doing, seeing, going, as much as possible before my health gets worse. At that time we will most likely return to a staying close to home mindset. So far we've done our annual music cruise, attended Mardi Gras, taken a road trip (including dog beaches) with our pups Rocky & Rosie, camped at a music festival, and recently spent time at lakes in the southeast with family and friends.
All of this travel is not physically easy but it is good for the soul. In my retirement I try to keep busy while at home. However, getting away helps to break up the weekly routine and creates memories that last a hopefully long lifetime. During our most recent trip our friend Ed said "we're making memories here". So right he is.
The downside of travel is that it interferes with my exercise routine. In a perfect world I would get up early and get in workouts even when on the road. In reality that's much harder. I've been holding my own lately but don't feel at the top of my game physically. Today I saw my pulmonologist. The good news is my lung functions are the same as my last visit in April. My lungs sound reasonably good as well. This is all great news considering how rough last year was.
When I see someone they almost always ask how I'm doing. If being truthful, I would say "Well I'm more short of breath than I used to be, get tired easier, and am using oxygen more." But my new response is "I'm doing great. I'm living the dream." "Living the dream" is how I feel we are living right now. Randy & I are lucky to have the friends to visit and the flexibility to do so. He can do his job from anywhere that has internet access. Since he's his own boss now he can work when he wants to. Of course I'm still not working which has been great for stabilizing my health.
Our next adventures include a transplant workup in November at Duke in North Carolina. Until then we will visit more friends and continue living the dream. I'm lucky to be alive and even luckier to have a life I love.
With gratitude,
Steph
Feeling rejuvenated I began making plans for 2012 or what is know known as "the year of the Rath's". My goal for this year is to see many of our friends far and wide. I do this also as a way of doing, seeing, going, as much as possible before my health gets worse. At that time we will most likely return to a staying close to home mindset. So far we've done our annual music cruise, attended Mardi Gras, taken a road trip (including dog beaches) with our pups Rocky & Rosie, camped at a music festival, and recently spent time at lakes in the southeast with family and friends.
All of this travel is not physically easy but it is good for the soul. In my retirement I try to keep busy while at home. However, getting away helps to break up the weekly routine and creates memories that last a hopefully long lifetime. During our most recent trip our friend Ed said "we're making memories here". So right he is.
The downside of travel is that it interferes with my exercise routine. In a perfect world I would get up early and get in workouts even when on the road. In reality that's much harder. I've been holding my own lately but don't feel at the top of my game physically. Today I saw my pulmonologist. The good news is my lung functions are the same as my last visit in April. My lungs sound reasonably good as well. This is all great news considering how rough last year was.
When I see someone they almost always ask how I'm doing. If being truthful, I would say "Well I'm more short of breath than I used to be, get tired easier, and am using oxygen more." But my new response is "I'm doing great. I'm living the dream." "Living the dream" is how I feel we are living right now. Randy & I are lucky to have the friends to visit and the flexibility to do so. He can do his job from anywhere that has internet access. Since he's his own boss now he can work when he wants to. Of course I'm still not working which has been great for stabilizing my health.
Our next adventures include a transplant workup in November at Duke in North Carolina. Until then we will visit more friends and continue living the dream. I'm lucky to be alive and even luckier to have a life I love.
With gratitude,
Steph
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