Ads 468x60px

Wednesday, November 25, 2009

And then there was Cystic Fibrosis

I read Lisa Bentley's story streamed by
CysticLife on Facebook about Lisa Bentley, Professional Ironman Triathete, who I happened to idolize in my day of tri's. Lisa Bentley has Cystic Fibrosis and she has come out and is public about it. If Lisa Bentley can talk openly about her CF with no login page, so can I.

I am currently living with my first PICC line:

It has been great and the Tobramycin IV and Ceftazidime seem to be wiping out my lingering lung bacterial infection. I feel better than I have in almost a year. The Picc is pretty sore, but worth every sore moment, as these IV anti-biotics are harsh on the veins. I spoke to some friends on the phone last night and their response to hearing me was very surprised that I sound as good as I do.... I feel that good, aside from the morning sinus headache and Picc line pain from pure overusage--- I am accountable for that.

Seneca, "Why do you delay,” says he, “Why are you idle? Unless you seize the day, it flees.” Even though you seize it, it still will flee; therefore you must vie with time’s swiftness in the speed of using it, and, as from a torrent that rushes by and will not always flow, you must drink quickly. And, too, the utterance of the bard is most admirably worded to cast censure upon infinite delay, in that he says, not “the fairest age,” but “the fairest day."
On November 20, 20008 I made a decision to live my life...Immediately, as only Seneca could say, but this past year has been the most growth producing, love filled, realized, vulnerable and happy time of my life, full of angstful self-reflection, havoc wreaking self truths, and a stark realization that if you are not living honestly--- You are not living.

The Cystic Fibrosis:
I have had chronic athsma and bronchial infections for the last eight years. My cognitive dissonance attributed all of this to overtraining. I was a semi-elite triathlete and marathon runner. I worked out 4+ hours a day. After a series of kidney surgeries and the inability to work out, I began to get one respiratory infection after another, beginning prominently in February of 2009. I was given Zpac and then Zpac and then Zpac and then Zpac and then Zpac and then Zpac--- It didn't work. On one day **Kismet** my nephrology doctor was out of the office unexpectedly and his young colleague treated me instead. -- He asked when my last chest Xray was and I said in 2004 when my lung collapsed. He asked me to corroborate the notes in my chart that I'd had 6-8 pulmonary infections in the last number of months. I did so.
He immediately ordered a chest X Ray and sent me to a pulmonologist. He wanted this to happen quickly.
I called the pulmonology number given, but the recommended doctor was out. I serendipitously got another one. He asked me questions, some having nothing to do with my lungs, and I answered, but countered question by question. At the end of our first appointment, he asked if anyone in my family had Cystic Fibrosis. My eyebrows raised in curiousity and I told him the story of Michael, my brother, the youngest, diagnosed at 3 1/2 months of age for failure to thrive. I told him how we all (the elder three siblings) got sweat tests. I told him I was fine. He ordered a copy of that sweat test. I had not been fine. I had been abnormal from the beginning.
He sent me to UCONN for a sweat chloride test. It came back positive. He sent me for genetic testing. It came back positive. On 9/1/2009 I was called in to see the Doctor and was told I tested positive for CF.
I was introduced to the CF doctor, who would become my doctor and handed new inhalant medications, new digestive enzymes and an appointment card to come back for my first Pulmonary Function Test and a collection of green cups to spit mucous into.
I had a lung bug called enterobacter aerogenes. I was given Avelox. My PFT was normal and off the chart. This was very good. My genotype is dF508 and M470V. This means that I am highly pancreatically affected, highly sinus affected and would undoubted have COPD in my lifetime... later on in my lifetime.
I was given a quinolone family anti-biotic. It did nothing... and another and another and another. Nothing. My bacteria stayed. My fever went up. My sputum was green and I was miserable.
I got a cold and continued to test positive for Enterobacter Aerogenes again and again and again. I was on the quinolones again and again and again.
Finally I had a follow up PFT that decreased 25%. My meds were switched up and I gained 3% but was still + for the bacteria.
On Friday (5 days ago) I was called and told to get in my car and drive to get a Picc line-- hence the first Picc.

This is beginning, i am grateful for the journey,


Post a Comment