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.

There are a lot of gathering places online – dozens of smaller groups and websites dedicated to CF, but a few places have thousands and thousands of members. Chances are that most people with CF who are online know, know of, or have a friend who knows any other person with CF online. I would seriously guess that the average degree of separation is 3 or 4, compared the theorized “six degrees of separation”.

In my online travels this week, I’ve found out that at least six people have died due to CF during this past week alone. The number of CF-related deaths in 2013 was 426 (out of 27,804 registered patients), which is an average of 8 people per week – pretty close to what the community has experienced in the past seven days.

It makes me so sad. Frustrated. Angry. P*ssed off. It’s devastating, and despite new treatments, sometimes it all feels so hopeless. I try to have faith, but this disease is a dream killer. So many people die in what should be the prime of their lives, when most people are building careers and families, putting down roots and climbing the ladder to their own personal goals. Something that a lot of people don’t understand is that well before CF patients die, most are very sick for a long time. Cystic Fibrosis tends to kill slowly, snatching dreams out of hands and hearts long before its victims draw their last breaths.

I pray to God every day for the man or woman who will be able to answer the puzzle, to figure out how to damn this monster, who hides in every single cell in the body, to the depths of hell. Science has come so far – there has to be someone out there who has the answer. If you pray, I ask you to ask for the same, even just for one night.

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

An Angel in the Hospital

I posted this on my Facebook page while I was in the hospital. This story touched so many people that I felt I had to share it here. This is not to challenge anyone’s faith or religious beliefs; it’s an account of the light that a stranger brought to me in a very dark moment. I have not changed the wording or anything, to preserve how I felt when I wrote it.

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I am absolutely convinced that this was divine intervention, perhaps she was an angel, or my guardian angel sent her to help. Dozens of people passed me in that hallway, looked at me, and made eye contact, yet she was the only one to stop. I wish I had been able to see her name tag – she had long hair that mostly obscured it. I want to somehow thank her, yet cannot remember enough to even know where to start. I would love to write a letter to her supervisor, to let somebody know what a treasure they have working there.

The transport team works one-on-one with the patients, often seeing patients at their most vulnerable, escorting sick people from one place to another. I guess that I can just share this story right now, and believe that somehow, someone found me in the middle of a busy hallway and stopped to help my wounded spirit. Bless you, Angel, for your kindness. Your generosity will never, ever be forgotten.