I often think of all of the trial drugs in development and the potential cure for cystic fibrosis as ships sailing at sea. One day they’ll all come into port.
But when?
Will I be there to greet them? That is the question that rattles around inside my mind.
A cold hit me hard on Saturday. Started in the head and by Sunday it was embedded in my chest. Have to gone to four day treatments, but I’m bringing up mucus by the gallon – almost like it’s not real. It just keeps coming. Looks like I’ll be going to the club soon for a 14-day treatment of antibiotics. Fun.
I’m getting pretty tired of “mice with CF cured” stories. How about some “humans with CF cured” stories?
Actually, I’m grateful these mice are taking one for us humans. I just wish the drug process would move faster. Take Cayston, for example. It’s the first new inhaled drug for CF in 10 years. 10 years! We need more drugs and we need them now.
In the meantime, thanks again to the furry critters who’ve saved me from taking a drug that would have made my pancreas melt or my lungs burst into flames. They’re the unsung heroes of the day. 🙂
I had a root canal a couple of weeks ago and went in for the final appt. today. Also, have the mother of all chest colds, which means I may have to go in the hospital. Cold is creating a festive environment for the bacteria. I was already on cipro for hemoptysis, so I may get luck and it will stop the bacteria.
Felt like I was in the dentist chair forever today. Worried about being prone and coughing up blood, which would have been quite a surprise to the dentist.
Only time will tell which way the cold goes and if I end up in the big house.
I may have cf, but I also have luck.
Here’s a great article on it: http://www.telegraph.co.uk/technology/3304496/Be-lucky-its-an-easy-skill-to-learn.html
If you’re concerned about the environment and the use of plastic in our society, you’ll want to see this:
I am in no way complaining about getting old with cystic fibrosis – I’m the luckiest guy in the world to have survived for so long. I am, however, complaining about growing old with cf and the ailments that come with aging.
Case in point: Last week’s root canal.
Two weeks ago, I coughed up blood. The doctors put me on cipro. The blood went away but I started getting the chills and feeling feverish. I started wondering if the cipro was working. Then the tooth pain came, which led to a root canal. Overall, I feel better, but not 100 percent yet. Is it the root canal infection or a cf infection?
That’s the hard part of growing old with cf – interpreting the signals of not feeling well. What’s cf-related? What’s conventional-illness related? Having this disease in like having two minds. All information must be interpreted through both.
Going on vacation? One mind says “great.” The cf mind says “bad idea, plane flight, germs – all leading to a hospital stay in another state or country.” Planning a month out causes the same two-mind thought process. Will I be in the hospital? How will I feel in a month? It’s so hard to tell the future beyond this moment. There are very few trends to rely on because my health can change overnight.
I wish cf was an exact science. Black and white. However, its symptoms mirror other common ailments at times, and it’s hard to know if it’s cf or something else. Think about the medical elements that have to line up to determine if you’re having an exacerbation. Fever? PFTs? Weight loss? SOB? Appetite? If they all line up negatively, like a slot machine showing all cherries, you win a trip to the hospital. Jackpot.
The hard part is when they don’t all line up, when three out of five go one way, but the other two go the other way. You’re left to gut it out and wait. Perhaps, try some cipro. Then a root canal mucks up the living experiment and you’re left to consider another variable.
No complaints here. Just a lot of thought. How many cherries will come up tomorrow?
In the movie Network, Peter Finch screams, “we’re mad as hell and we’re not going take it anymore.”
I’m mad as hell that I have cystic fibrosis. Unfortunately, I have to learn to take it. If I started screaming “I’m not going to take it anymore,” I’d only really have one option. And, though I’ve given much thought to that option, I will not be exercising it at this time.
So, I may be mad as hell, but I have to take it. I have no choice. Yet.
Having cystic fibrosis goes hand in hand with searching for symptoms health information on the web. At least for me it does.
When my health goes south, I head to the Internet.
This afternoon, it felt like a I had a fever, but my temp was just a hair higher than normal. I was burning up and my eyes were puffy with shiners. Hospital time?
It’s hard to figure out what’s wrong using a search because I can always find some poor person who has had the exact symptoms I’ve typed in. It’s too easy to prove any medical claim using the Internet because so much “truthiness” exists and someone at some point has had exactly what I’ve typed in.
So, I had to trust my gut and figure that the cipro might be causing some problems. By narrowing the search with key information, I found more realistic answers for my situation. Is this any different than a visit to the doctor?
An Internet search for health information matches my doctor visits: The better the information I supply, the more accurate the diagnosis.
After four decades of fighting cystic fibrosis, I’ve finally figured out what I’m up against: Random acts of bacteria.
The Unknown Cystic 