Lisa Bentley's Blog entry from 2/16/10
A Speed Bump!
This is what is going to get me over my speed bump. It isn’t a faster pair of Zipp wheels or a sleek Cervelo or a pair of Fastwitch racing flats – this is my IV antibiotics – my lastest ammunition against the bacteria which have decided to take up long term residence in my lungs for the past year!
As you may or may not know, I had planned to go to Florida to escape winter, to put on a few training camps, to train and to do my coaching and speaking work from there. But, we have not made it to Florida just yet!! . My lung health, as related to Cystic Fibrosis, has been very turbulent over the past year. For most of my life and professional athletic career, my lungs have been functioning at well over 100%. For the past 18 months, I have been growing a nasty bacteria called pseudomonas which is very difficult to eradicate. Since then, I have been on and off a variety of antibiotics and inhaled therapies. Despite all of this, my lung function, which measures the usable oxygen levels in the lungs, has been decreasing. After a rough race at Subaru Muskoka 70.3 last September, the doctors were convinced that I had an allergy to a bacteria in my lungs and started me on another course of drugs. But those drugs did nothing and so the allergy theory was dismissed. Then for the past 3 months, they have tried to figure out why my once perfect lungs were now functioning at about 80%. Therapies continued but my lungs continued to deteriorate until on January 1st, my symptoms worsened, my lungs were down to 72% and we began another course of antibiotics on January 5th.
On January 14, I was still feeling less than stellar with a major shortness of breath while walking and eating and doing daily activities despite 8 days on this wonder drug. Meanwhile I was still doing what I could swimming, biking and running since all of my sports are great lung therapies for clearing mucous. Of course, I was struggling doing my exercise but I always say that you do what you can with your deck of cards and my deck, at the moment, involved a bit more huffing and puffing. I went back to the CF clinic and despite 8 days of medicine, my lung function had dropped to 70% (from 72% on Jan 5th and from 98% in July!!). At that point, they wanted to admit me for IV antibiotics for 2 weeks. However, I was committed as a guest speaker on the Cruise to Run (besides, who would want to miss a Caribbean cruise) – so the doctors allowed me to go on the cruise while continuing the current course of antibiotics. I had to return to the CF Clinic on February 2nd to see how I was doing.
The Cruise to Run was amazing. I was probably the only person who began the cruise not feeling great but I finished the cruise feeling so much better – rested and breathing so much easier. The sun and the sea air and warmth and salt water made me feel so good. I ran and swam and water ran everyday – slowly of course, as dictated by my lungs – but I could run and swim and I loved it!! Yes, even my undertrained, but incredibly gifted husband Dave, ran faster than me, but I didn’t care – I loved every single minute of each run. I honestly thought that I would return to the CF Clinic and see a rise in my lung function.
But instead, I returned and despite 3 weeks on the medicine, my lung function was 66%! So I was admitted to St. Michael’s Hospital in Toronto that Tuesday!! Essentially, the pseudomonas bacteria had outwitted the antibiotic Ciprofloxacin and had thrived instead of being killed.
The doctors inserted a PICC line in my arm which is a catheter leading right to the Superior Vena Cava which goes right to my heart! It is a permanent IV line which can stay in place for 6 months to 1 year! They started the IV antibiotics on Wednesday. It is a 2 week course of IV antibiotics. They wanted to keep me in hospital for the entire administration of the drugs but if I could learn how to do the IV myself, then I could go home and have a nurse visit daily. So I learned the procedure (which was harder than I thought) and they released me on Friday.
So now, Dave and I flush the IV lines and hook up the IV at 6 a.m., 2 p.m. and 10 p.m. and we do chest physiotherapy and my inhaled medicine a few times per day – so it is about 5-6 hrs per day of healing. As my friend Janet Fraser said –“ I am on a training camp that is all about ‘healing’ right now!!”
Today marked 2 weeks on IV antibiotics and a return to the CF Clinic. I am feeling so much better and happier and healthier but my lungs are not quite back to their baseline just yet!! The plan is to continue on IV antibiotics for a bit longer – maybe another 2 weeks so that we can really deliver the eviction notice to these bacteria.
I am good – I am content – grateful that there is a solution. I am totally confident that the antibiotics will work. They are working already. I do not act or feel unwell. I actually never thought that my lungs would ever return to their baseline of 100% so this IV therapy is a true gift and blessing. I figured that the incredible athletic success that I had been blessed with for 20 years would now be replaced with the realities of CF and I was ok with that. I have lost about 1.5 litres of oxygen in the past year and I thought that THAT would be the new me. I got used to huffing and puffing while swimming, biking and running BUT I held onto the joy that at least I COULD swim, bike and run. But now, I have huge faith that I am going to get back to either 100% or very close to it. Whatever the result is, I am determined to never let it get in the way of living full and doing my sport forever. I may be slower but I will be healthy and happy and ready to share my 20 years of triathlon with others and ready to instil hope to families with CF that there is health beyond treatment, there is joy in being treated and that we can all be the best we can be with whatever health we have. I do not wish that I did not have CF – I have it for a reason and I will be the best wife, daughter, sister, friend, athlete, coach, mentor and motivational speaker with CF that I can be at every step of the journey – the easy steps and the not so easy steps.
Thanks for your support – I will be great – I just know it!
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You’re amazing, Lisa. If attitude alone could will a person to health, you will be the healthiest person in the world. I’m looking forward to meeting you in person in June.
Hero’s are not only those who wear medals. So many athletes could learn so much from your approach to life and sport. Look forward to running with you again soon.
Stay strong and get well love Brenda Jenna and Nicole
Hi Lisa,
Your strength, optimism, pragmatism and refusal to ever feel sorry for yourself never cease to amaze me.
I did my first Ironman in Penticton in 2005, and I went with my friend to listen to you speak the day before the race. You told us that, whatever happened on race day, to remember “that’s your day” – just get on with it and remember that you’re lucky to be out there doing what you love and that nobody’s forcing you to be there doing it. I fell off my bike about 500m into the bike leg! I just kept telling myself – “that’s your day”, keep going, stop whinging, nobody’s forcing you to do this.
In 2007 I fell off again, but this time my head and road had a pretty big collision and I was helicoptered off the Alpe d’Huez to spend a couple of weeks in hospital with bruising to the brain. Your words came back to me again and again – that’s your day. I’m ok now, but the whole incident caused me to reassess my life and I quit my job to write a novel. It’s called Bad Things Happen, and it’s about how we recover from misfortune.
All of this is a very long-winded way to tell you that you’re in my book. Not by name – but there’s a Canadian character that tells my lead man to stop feeling sorry for himself and get on with it. That’s your day, she says.
I know you’ll be great, and I want you to know that you have touched my life in a very real way. I’ll follow your progress and I wish you nothing but good things.
Take care,
Tim
You are a source of such amazing courage and perseverance…hang in there. We are all thinking of you and send our best!!
Hi Lisa,
I wish you all the best with your rehab. You inspire more than you could imagine. we have completed our second Cycle 4 Cystic Fibrosis in Australia, with many more to come. Each group that has participated in our ride has heard about you and your amazing achievements.
Keep fighting hard.
best wishes.
Mat
Hi Lisa!
I met you only once at a run clinic in Brampton (a fundraiser for a swim club I think) and have seen you at a few local races. Anyway, I’ve followed you since I started Tris (in 2001 – because of Simon) and am totallly inspired by you. What an amazing attitude!
I just wanted to wish you well and wish you a speedy recovery.
Take care!
John
p.s. tell Subaru Canada that I picked up one of their new Outbacks because of you!
Dear Lisa,
Your attitude is amazing. Best of luck fighting this off. What you have done with CF is in an inspiration to all.
Recover strong.
Dev
Lisa,
You are an inspiration to an entire community of CF patients. As a 25-year-old living with Cystic Fibrosis I have found myself in your exact situation many times before and I can say with conviction that strength and positivity are what get you through these difficult times. In fact, during my hospital stays I have found that strength and positivity by following you and your amazing accomplishments. You were the reason I signed up for my first triathlon 3 years ago, and you are also a large part of the reason that I am organizing a 10 day, 1000km bike ride around Lake Ontario this summer to raise money for the Canadian Cystic Fibrosis Foundation.
Even though you might not be able to get out there and train the way you would like; take pride in the fact that your accomplishments speak for themself and that you do make a difference in the lives of people living with CF.
Thanks Lisa – and get well soon.
Erick
Dear Lisa
I check back on your blog regularly to see how you are faring….we are all rooting for you and the above entry from Tim should say it all…you have touched alot of lives in truly positive ways. Know that all those people are rooting for you now, when it is your turn to need the encouragement….I say again…you are a source of courage and perseverance…hang in there!!!
You are a huge inspiration! I do not know much about CF, but I have seen you race in Penticton, and I think you are furious! I only look up to you, and love your blog!
When you race, your grit and determination are always so evident…and it seems that when it comes to ‘life’…you are no diffferent.
What an inspiration!
Lisa,
You are simply heroic, thanks for being such an inspirational person. Sorry i couldn’t make the C2R this year, another darned military conflict, but i thought of you and Dave and the rest of th cast and i am so glad to know that your attitude on life and sport has not changed a bit!! CF just doesnt know what it’s messing with when it messes with Lisa Bentley
p.s., on a lighter note, i wanted to tell you that in my chruch, here in little Indiana of the U.S., we have a 100% real Canadian!!!!!!!!!!!!!!!!!!!!!!!!!!!
i know!!!! i was so excited to meet him, he does a lot of our mission work and he just arrived back from Haiti, and i went up to him and told him all about running with you and Dave on C2R January 2009. He was so excited to know that i knew so much about you. I was excited for that as well, but even more excited to meet another real Canadian!! Here in Indiana!!!!!!!!!!!!!!! Hahaha hope i made you smile, you’re the best. Please say hello to Dave for me, he is awesome too!!–dkb