Calling Cystic Fibrosis Patients

Do you have Cystic Fibrosis?

Do you have a story that you’d like to tell? Some tips that you’d like to share? A photo depicting an important moment in your life?

I’d considering doing a series of blog posts about people with Cystic Fibrosis. I haven’t formed any real structure around it, but I do know that I’d like to include people from many parts of the world, from different backgrounds, etc.

If you are interested, please comment send an email to: therapink . com @ gmail .com (remove all empty spaces).

To begin with, please provide the following information (please note that this information is for my general info-gathering purposes only):

1. Name (first and last – although only your last name’s First Initial, and not your last name will not be included in the blog post unless you give permission to do so)

2. State/country

3. Age

4. Age at diagnosis

5. Single – Relationship – Married – Separated – Divorced – Widow – Other

6. Children? Yes or No

7. Transplant? Yes or No

8. CF Mutations

9. Best way to reach you – email address, phone number, or text message

10. Some words that describe you. For example, I might say this about myself: writer, cats, silly, book smart but street-naive

11. In addition, I would like to include at least one or two photos of you, once I write each post. Don’t send them now, just send your answers to the ten questions.

Thank you in advance. I truly hope that my plan turns into something of value. If it doesn’t, I thank you for your time. I’m pretty sure, however, that this will become something. Let’s see where this goes!

I Have to Have Faith

This past month has been a rough one for the CF community. Because we’re strongly discouraged from gathering in person – the Cystic Fibrosis Foundation recommends that no two people with CF should be near each other indoors, and that they maintain a distance of at least six feet outdoors – most of our support happens online. Continue reading

Growing Older with Cystic Fibrosis – Two Sides of the Coin

Sometimes, life with Cystic Fibrosis makes no sense. You can go years without needing to go into the hospital or requiring IV antibiotics, and then suddenly need to do so five times a year. One day, you can have a relatively manageable lung function, and a week later lose half of it with a single infection flare-up.

I’ve seen each of those scenarios play out often enough to not trust CF one bit.

You see, we can do everything right – perform hours of airway clearance a day (my doctor wants me to do six hours when I have an active infection), inhale medications morning, noon and night, take dozens of medications and supplements, eat high calorie meals to replace lost calories spent simply breathing, see our (many) doctors regularly, gand o into the hospital for maintenance and acute flare-ups – and most us still aren’t going to live a “normal” or “typical” life span. Continue reading

Chasing a Moving Target

It’s been a crazy summer. I spent most of it either getting sick, being in the hospital, or recovering. One thing that many people don’t understand about CF is that even after we come home from the hospital, or finish a course of medication, we’re not necessarily “all better”. The term “all better” is known as “Baseline”.

Baseline is the place where your “numbers” or symptoms go to when you’ve recovered from an acute (temporary) flare-up or episode.

What is Baseline?

For example, let’s say that you walk for an hour each day, averaging 4 miles an hour. You twist your ankle, and you can’t go on your regular walk for a few days. When you start getting back on your schedule, you might walk a bit slower, or not be able to walk for the usual hour. As your ankle heals, you eventually get back to where you were before the injury – walking 4 miles in an hour, every day. That would be your baseline. Continue reading