Replies: 1

Sometimes, when my girls and I are bored, we like to play a “Which Would You Choose?” sort of would-you-rather-game and today, while feeling a little “buggy” and not having anything very deep to share I thought… Why not play our own version with a CF twist? (Who needs depth on a Monday, right?)

So grab some coffee, settle in, and let’s have a little hospital-themed fun…

Which Would You Rather:

Have a salty snack or a fatty dessert?

Take Creon with pudding or apple sauce? (not like we do this but if you did)

Have a 5 AM doctor round [in hospital] or a super-talkative night nurse?

Be on antibiotics on a beach vacation (hello sunburn) or be on vacation and forget your nebulizer?

Need to cough but can’t [dry, stuck, etc], or trying not to cough but can’t stop?

Add your own below!

Replies: 2

It’s been a few weeks, but we’re back with Weekly Wins!

Tell me, in the past week or so, what is a “win” you’ve experienced? Related to CF or other areas of life; big or small; silly or profound. Tell me something that you’ve been blessed with, a thing you’re kicking butt at, or an accomplishment you’re proud of. 

Mine is a little silly, but feels awesome. Morgan is out of school for summer break which means I haven’t been setting an alarm to wake up. I naturally wake up around 7:00 am which is just 40 minutes later than I’d have my alarm set for, but being able to just let my body do it’s thing feels so much better!

Tell me something that feels like a win for you.

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A recent report on Trikafta shows the great benefit  but still incomplete benefit of the drug. However it still presenting CF as being just a problem with faulty mucous and sweat. Vertex and others still fails to recognise that the failure of the CFTR Channel has effects has effects in every cell of the body – not just cells of sweat glands and mucous membranes. While organs with mucous membranes such as the lungs, gut and pancreas may be most severely affected, every other cell is affected by retention of Chloride within the cells. Adrenal and Parathyroid Glands, heart and other muscle cells, endothelium (the inner lining cells) in blood vessels may all be affected and issues with these may be seen as CF’ers live longer. Trikafta and other corrector/potentiator drugs may be expected  to improve problems such hypokalaemia which are common in CF’ers. Cardiomyopathy (heart failure) has long been recognised in new born and still born babies but of late is increasingly  recognised in adults. Often CF’ers with heart failure do not respond to the usual drugs as ‘normal’ persons do. ACEI’s & ACB’s, Beta Blockers and Calcium Channel Blockers are all reported to give unacceptable side effects – is that because the intracellular electrolytes are abnormal?

If Chloride is retained in cells due to failure of the CFTR channel, other electrolytes must either be increased (Cations – eg Calcium, Potassium, etc) or reduced (Anions – bicarbonate). Abnormalities of these electrolytes may well be the reason CF’ers have some weird reactions to many drugs including the heart drugs.

This side of CF needs much more research and attention without reducing that on the lungs.

Replies: 1

Nothing says Sunday morning better than a good coffee and some fresh baked croissants. And a covid shot.

Well, today that is. Debbie got her first just an hour ago, and I got mine earlier this week. We both got Moderna by chance (it was either this or Pfizer, depending on the order in the line-up).  We were happy to wear one of our good facemasks, we have still some left of the supply we bought in December 2019 when we saw the pandemic rising in China. Only last week in the Netherlands the lockdown was enlightened further, but still you can only have 4 visitors a day in your home. How strange to compare this to the situation in which we got our vaccination. In a comparably small hall at least 50 people crowded together in line to get identified, issued a number, guided to one of the even smaller six rooms where the vaccine was administered, then again pushed further to another relatively small, poorly ventilated room were they were supposed to sit down and wait for another 15 minutes to be sure that they did not react adversely to the shot.

Although all of the candidates were wearing masks, we were the only ones with a proper one. It is hard to understand why, 18 months into the pandemic, proper (N95) masks are not widely distributed by governments. Not even the nurse who administered the shot had a good mask. They all wore a simple surgical mask, the blue-green thingy that doesn’t fit the face very well and leaves much to be desired, protection-wise. And in the recovery room (the 15 minutes-hall), all participants were advised to even take off their mask (!), in order for the nurse to watch their bodily reactions more easily.

Needless to say that neither of us took down the mask, nor did we wait for 15 minutes in the recovery room. I talked this over earlier with our personal physician, who assured us that on average, covid shots did not cause more anaphylactic reactions than the seasonal flu shot, so this waiting period afterwards was not necessary at all. Neither of us ever reacted badly to a vaccination in the past, so we thought the risk of getting infected in the waiting room was probably higher than the benefit of the whole recovery-circus. Even for Debbie, who had an anaphylactic reaction once in her life to some specific food. We waited outside and in the car for a little while, than drove home. One shot down, one left. Are we better off now? We have no clue.

The Netherlands are doing averagely when it comes to vaccination, compared to the rest of the European union. At the moment, 10 million shots have been administered on a population of 17 million. Last week, 165.000 shots were given every day. 67% of those older than 18 have had at least one vaccination. Still, this means that most are snot very well protected at all. The decision to open restaurants, concert halls, cinemas, schools etc. as of this week feels more like a political/social move than a wise one. We will not be joining the crowds yet. And we don’t mind. We do our part not getting infected and not infecting others. Taking the shots is (possibly) a small contribution to that.

Replies: 2

I got positive news yesterday that made me start sobbing. Happy-crying in my car like a total nut. And even though I can’t reveal it yet (and even though it also probably isn’t that exciting unless you’re a ballerina? I don’t know?), I had a moment of: “Wow. Sometimes beautiful surprises really do happen.”

This week has been medically frustrating, but mostly in the logistical sense. It’s taken over half-a-month to get the CT ordered that we need for my back, and the constant phone-tag between surgeon’s office, hospital, and even my orthopedist who we asked to help speed things along has felt endless, fruitless,  maddening. (You guys know the drill.)

We are about to go into yet another weekend, and we are no further along than we were … but then, something amazing happens, and it makes all the medical jungle gym time feel a little less daunting, you know?

So today’s question is simple and a great way to round out a long week:

What is something surprising and beautiful that happened this week?

It can be small, like a rainbow or a great meal, or large like a big breakthrough or celebration. What was your beautiful takeaway this week?

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One of my dancers just started Doxycycline (for a skin condition) and the two of us have been talking about symptoms. The first time she tried it – at a much higher dose- it made her super, super sick, and she had to go off of the medication all together.

I of course gave her all the usual tips (which she definitely didn’t need me womansplaining to her but I couldn’t help myself): “Never take it on an empty stomach…. make sure you’re drinking more water than normal…. start off with a smaller dose than recommended and work your way up”. After awhile and with a smaller dose, she adjusted and has been doing okay. But it got me thinking…

What is your favorite antibiotic?

Yes, weird question… but is it for us? Not really (haha). Most of us know our “drug of choice” for kicking bugs and mold and infection, as well as the ones that we hate.

I am anaphylactic levels of allergic to rocephin (found that out the hard way), but tolerate IV Bactrim really well. I feel like Bactrim is very often my clinic’s drug of choice with me, but the oral version really messes up my stomach, and is not a fun ride.

What about you?

Replies: 1

I have a symptom right now that I hate. Loathe, even. Because a disc in my upper back is having major issues, and steroids and PT are yet to help (waiting on a surgical appointment and new test results to learn best plan of action), I am having a hard time doing what I love most:  writing.

But really, truly, so. Every time I spend a chunk of time doing my actual job- as well as replying to doctor emails since I can’t call, communicating with family, and onward- my shoulders start to go completely numb, the pain of the pinched nerve gets far worse, and my hands start to work less and less.

Last weekend, I danced for 5 hours on Saturday and 7 hours on Sunday, and I still had less pain and issues than I do from a full day of computer work. It’s baffling to me. (But I guess we don’t look down as much when we are dancing?) Anyways, it is really cramping my style. My life. My ability to work. I feel like I’m avoiding my computer every chance I can get, and typing on my phone isn’t much better since the disc is messing with my hands. I keep wanting to say: “Who even am I?”

Writing is what I do (literally) for catharsis… as a living… to communicate. And so is dance. And both are deeply hindered by yet another disc occurrence in such a short amount of time. 

So, even though it might seem like this is just a post to complain about what’s going on… it’s actually meant to ask the following:

What is a part of your body that stops you in your tracks, when having symptoms? 

Is it headaches from sinus surgeries? Are lung infections the thing that can’t “mind over matter”? Is it pancreatic pain (ooh, I feel that one too) or liver or beyond? Is it something unrelated to CF all together- like a time you broke your ankle or hurt our wrist? 

If there was one body part you avoid ever being hurt again… What would it be and why? 

Replies: 0

Day 31 of 31 Days of CF
Topic: My Mom Has CF, But It Doesn’t Have Her

“And (don’t tell her this) one day I want to be just like her. She’s not just a dancer, boss, writer, wife … and she is not CF. Just because she has CF doesn’t mean CF has her. She chooses what she is. And every morning when she wakes up, she chooses to be my Mom.” — Kage LaBarbera

Once again, we get a glimpse into the life and relationships of our dear Bailey. This story from her daughter is so powerful! As a mother with CF myself, it speaks right to my heart.

Read Kage’s full post here or here.

This concludes our 31 Days of CF posts! What did you think of these stories? Are there any that stood out to you or that you especially liked?