A friend of mine posted a pic of himself wearing his CF vest, or jacket, connected to the hoses.

Your eye immediately is drawn to the jacket. Yes, the person wearing the jacket, but the jacket. It’s about this materiality, objects, things we hold as value in our lives. It is also a mirror reflection as well, right.

I remember when I went to CF camp at 14, and when we walked into the main house, these see-through medal crates with wheels rolled were rolled back and forth between us. The crates had wires, and tubes, and this compressor-like device inside. It reminded me of a retro R2D2.

One fellow camper, Chris, he owned one of the crate machines. He had to do his treatment four times a day so I can see why. I remember after doing my morning one, four hours later he was strapped into his jacket and inflated with air, and his neb in his mouth and there he went – he took off. Then, four hours later after that, and then four hours later after that we joined him together.

His voice was a bit raspy, but he had this huge smile all the time. I imagine in part that he didn’t have to have his parent’s pound on him anymore. He laughed, like an echoing laugh that carries to me, to you, to three other people, and back. Always smiling – and had this immense strength I admired. I used think, I don’t know if I would be smiling that much if I had to do my treatment four times a day.

I used to wonder, how can you go to school? You can’t. That’s how.

I knew a girl who had to do a treatment in the middle of her school day. She had to take time out, go to a room, the nurses’ office, and have a PT person pound on her for 20 minutes to 30 minutes, depending. This was before the jacket. 

This jacket – has saved countless lives.

Dr. Warwick, the revolutionary, “became fascinated by studies showing that inflating and deflating a blood pressure cuff around a dog’s chest” and how it mobilized and forced the dog to cough” (“The Bell Curve” The New Yorker). He started tooling and figuring it out.

I just found this article that Dr. Warwick wrote – I can hear his voice in my head. The logic and straight-forward manner.

“The sine waveform vests must be inflated before the High Frequency Chest Compression (HFCC) can start. The compression reduces the patient’s volume making breathing difficult. Then every patient must use extra energy and more muscles to take a breath. As the air in the chest increases; the volume in the vest decreases. That decrease in the vest volume compresses the air in the vest which increases the pressure in the vest making it harder to breathe” – Dr. Warwick.

Later, Dr. Warwick and his team created a new vest implementing a triangle waveform vs. the sine waveform and it was 22% more effective.

Reading this, the low frequency, slower and lower frequency is much harder to breathe. Per the explanation, it must really squeeze the lungs. I usually can’t do it. Let alone, it makes me nauseous.

When I was in the hospital and I was having trouble breathing, and my lung scores dipped, when I put the vest on, I still had a hell of a time breathing. I stopped it almost right away and said that I couldn’t do the high settings.

It was made known, that sooner that I could do the “recommended settings” sooner I could leave. Again, that’s great – but I could not do them.

The respiratory therapist was not amused. She kept saying, although I had literally one hour sleep maybe, something about “it’s going to take longer for you to get out.”. I said something to the fact, that “I can’t do it.” We stared at each other and I suggested starting out at an easier frequency and then with hope, build-up. She hesitantly changed the frequencies.

After the first few days and week, I could. I have a feeling they were enforcing their recommendations from above, but I still reiterated, “I don’t know what to tell you.”

Later during my stay, the NP said that “We really were concerned, and needed you to get better. You were very sick, and that’s why we were enforcing the settings so much.”

Everyone kept saying how sick I was . . . which I knew but I also feel like you don’t quite understand or comprehend it completely.

The jacket worked and still works. Each treatment I felt air moving more and each day, and many times a day, someone held a stethoscope to my lungs and listened for the air movement, and how each day it increased.

They would “knock” on my lungs with two fingers, and they do it to see if they hear an echo back. The first few days, they were not hearing an echo, so it was pretty loculated.

I just kept saying that I felt better every treatment and every day and just kept focusing on each breath and treatment. Later, they heard an echo and kept hearing it.

There is profound gratitude in breathing. And you may say, “Yes, of course.”

But what really sticks with me, I had a very difficult time taking my pills, because I needed to breathe. I stared at them and more than a couple times the nurse or doctor would say, “You haven’t taken your pills yet.”

My response, “I’m working on it.” I said to one doc how it “takes the place of a breath, but I will get them down.”

Now, it’s pretty cool to toss back a few pills and move about, walk about, and breathe just fine.

The proximity to not being able to breathe or breathe well is very real, and it is very real for a lot of folks.

Once you feel that – literally nothing is taken for granted. I can stand, walk, run – sprint some, do push-ups, yoga, other muscular exercises and I am breathing a little harder, but I can do it.

Here’s a couple thoughts from Dr. Warwick:

How to have 25-plus hour days:

“HFCC treatments take at least 30 minutes a day so that leaves you only 23 hours a day to do the things you like to do, want to do or have to do. So small wonder that many patients find excuses to skip this health preserving treatment as often they can find an a plausible excuse. There is an option. Double tasking!

Double tasking has become a specialty for many people. My challenge for CF patients is to discover a second task to be done with their HFCC treatment. Then they will accomplish for each half hour a prescribed half hour of HFCC and a half hour of the chosen task that they like, want or have to do. The total for the day then is one hour used twice and so a 25 hour day has been achieved.”

It’s so him.

Good things about CF

“I ask every patient, parent, and spouse to tell me three good things about cystic fibrosis. Some have troubles but all rise to answer successfully. One mother took 4 days.

CF is treatable

With CF you do not have to worry about cholesterol.

You meet wonderful families and friends.

Having CF gives a better understanding of people who have other health problems.

Having CF in the family has helped us enjoy every day and to appreciate our child.

CF taught us not to take things for granted.

CF helped us appreciate support from family and friends.

Dr. Warwick points out that CF is not a disease but a mutation.

I say – we must keep working in and around our abilities, the gaps or spaces in between, and with hope and work, and even with broken parts and hurt parts, just keep moving and breathing each day.

The CF vest – jacket is the cost of a small vehicle, but thankfully over time and with much energy and dedication, thousands upon thousands of folks have a CF vest.

I want to say – sometimes physicians or other medical folks remark how healthy I am, considering my whole health and age, and the one word beyond all others comes to mind: proximity.

Proximity to phenomenal care;

proximity and time that I met Dr. Warwick;

proximity to phenomenal research, and

the proximity to the ownership of the vest.

There is so much to be grateful for in this world – even with the pandemic and the constant movement of energy in and around us. And totally off topic – did I ever mention how much I love school? My classmates, my professors.

Much love to you and you and you.

Many blessings and gratitude. Let’s keep it up.

Ps. My apologies for errors. My eyes are very dry and making the words a bit blurry.

Work cited:

Great article:

https://sharktank.org/warwick/

https://www.respirtech.com/therapies/incourage.html

http://www.newyorker.com/magazine/2004/12/06/the-bell-curve