alexie.babin

Boom Boom Swag -

Hi everyone 💜

First of all, I want to thank everyone who follows my journey with cf. I know I have been quite MIA in the past few weeks/months. Unfortunately, that’s just the reality of cystic fibrosis… very raw and unpredictable. I haven’t been doing much lately besides staying home and resting all day everyday. I do the best I can to at least go outside a few times a day and enjoy the nice summer air. I am waiting to be done this week of appointments before making my next update, as I will have seen over 10+ specialists over the past 2 weeks. Hectic to say the least.

Thanks for everyone who keeps checking in and making sure I’m good, it means a lot right now 🤍🤍

Little update:

I am out of the hospital and back home (got discharged last Thursday). I am still very sick… but I am stable enough to be out! My lungs are still very weak but I don’t notice the shortness of breath as much, and no longer on 02 either. I have been extremely tired, like debilitating. I can’t get myself to walk around because I just can’t stay awake. I’ve been spending 95% of my time in bed, sleeping. The CF dietitian increased my feeds and switched my formula as well to hopefully get my weight back up a bit and stable. So now I’m on 2cal/ml formula, which runs over the course of 10 hours and then for the next 10 hours after that, I run electrolyte fluids through my tube. I am not eating or drinking much by mouth at all. I am exhausted, I really am and I don’t know how much my body can actually take of this. Just surviving and not being able to do anything on my own is very very frustrating and I’m having a hard time managing the emotional stress (and my Addison’s) that comes along with being so ill. My Addisons is obviously flaring because of how sick I actually am. The other rough part is my heart rate… completely out of control. My average resting heart rate is currently 130-165 beats per minute. I can be lying down and it will go up very fast, making it difficult to lay on either side of my body without getting palpitations. I am quite unsure as to what would be causing it; it could be a multitude of things. Some are: potassium levels are off, POTS, pain, dehydration, overall unwell. Now, 2-3 days ago, I accidentally stepped on my Jtube feeding line in the middle of the night while getting out of bed.

Day 18:

Not a huge update today... but yesterday was a hard day to say the least. With the intense vomitting episodes I am still having, I managed to throw up my Jtube. Usually this happens with nasogastric tubes, but not surgically placed JTubes. We changed it, again (2nd tube change within 2 weeks), and now we are okay to use it again. I am still on my course of IV antibiotics for my pneumonia and have a few days left of that. I am still dealing with DIOS symptoms and I am just in more pain because of it. We aren’t changing anything else for now, we are just going to take it day by day. I am still on IV fluids, and a couple meds. We have finally started doing feeds/peglyte through my tube and I am hoping we will continue them and see some improvement. That’s pretty much all I have for now. I am super duper tired right now and not responding to very many messages, but I am still seeing them come in and I am very grateful to have so many people that love me and want to support me in any way they can. Just know that I so appreciate the messages, they do brighten my days :)

Day 15 🩷

Day 15 h🩷

Not much to update on! But random photoshoot in the parking garage was a funny and fun time

Day 15 🩷

Random photoshoot in the hospital parking garage? Yes.

Day 14:

I am exhausted… I think that’s an understatement. I am still throwing up constantly and very nauseous + dizzy. Pain wise, I’m stable. Last week we confirmed another DIOS flare (distal intestinal obstruction syndrome - a bowel obstruction). Most likely caused by high doses of pain meds to control my pancreatitis. So once again, we start intense peglyte treatment (at home I do 1 L a night - so we will need to most likely double, if not triple my dose over the next few days). I am walking around a lot more but still coughing a ton and on oxygen.

It’s beautiful weather outside, that’s enough to keep me smiling 🩷

HOSPITAL DAY 8-9 update
*french version in comments

PICC line placed ✔️
GJ tube changed ✔️
No complications, smooth procedures, and I got to see my mom & my sister, which meant everything.
They also switched my antibiotics after finding strep in my lungs, so we’re now targeting it properly.

Today… is heavy.
Breathing is getting harder by the hour. Even with treatments, inhalers, and high levels of oxygen, it still feels like I can’t pull in a full breath.
That’s the part people don’t see.
Not just cystic fibrosis, but the fear that comes with it.
The kind of fear that hits when your body won’t do something as basic as breathe.
We’re starting high-dose prednisone to try and bring down the airway inflammation and give my lungs a fighting chance. I’ve also been prescribed Benadryl to manage the intense itchiness in my arms.
Right now, we’re waiting on the team to come back and reassess because things have been declining pretty quickly this morning.
Taking it minute by minute.

Day 3 admitted… again.

This time, things aren’t as easy. So, to explain this admission, you need a bit of medical explanation and context:

Medically, chronic pancreatitis over time will end up killing your pancreas, resulting in blood work that looks normal - no elevated lipase levels (which is the number that goes up when I I’m having a flare.

Context: that’s exactly where we thought we were at. We have been stuck in a constant loop of flares - without raised levels. But over the past month, they’ve sky rocketed 3 times.

I came into ER on Monday because of severe pain, uncomfortable and uncontrollable. I started not being able to keep anything down - not even ice. So I came in and we found my levels were above 600 (normal level range is