Chapter 2:
Cystic Fibrosis

Speaker 2 (08:06)I do correct one. I've started correct.

Speaker 1 (08:08)TOL.

Speaker 2 (08:10)Ya, my husband does karate decided to try it with

Speaker 1 (08:15)Him.

Speaker 2 (08:19)Ya oh. Yeah, besides the the manipulating and the taking my meats and things like that, my life was pretty pretty normal.

Speaker 1 (08:33)Oh, to be very honest, I thought it was going to be completely different because of the things I've had and like, there's 1 or 2 movies on people with. See if So I had a different Idea of it.

Speaker 2 (08:54)Yeah, II mean, you know, in the media things like the movies like 5 feet apart and the the that girl clear why Weinstein, I think it is her name was wins. Ones. They They were very advanced in the CF.

Speaker 2 (09:12)You know yeah. And 5 feet apart was quite when it raised good awareness, but it was quite sensationalised and romanticised. Yeah, and they have been times that I've been, you know, in hospital on oxygen and looked a lot like that.

Speaker 2 (09:34)And it's true, I'm not allowed near any other people would see if and stuff But on that note, it's amazing how, in my lifetime we've as a community been able to get closer because of social media. We know each other very well, but Because of social media, you know, before we didn't know each other, because we couldn't be in the same room together and form friendships, but now because of social media, we actually know what's going on in each other's lives and are able to actually be a lot closer. So it's been an interesting shift.

Speaker 2 (10:13)Yeah, during my last time.

Speaker 1 (10:16)No, that's that's lovely. Oh Ah, then you were saying you, you do your normal. Um medical instructed things erm, but I wanted to ask if you can be more specific at what kind of treatments or medications do you have to take regularly?

Speaker 1 (10:41)And if you do go to hospital, what would they give you?

Speaker 2 (10:46)Okay, so everyday? A nipple as with an antibiotic called chalestin and a steroid called palmerzine. Lena also have to nibilise with what's called hypertonic.

Speaker 2 (11:04)Saline, so it's salt water, that's extra salty, and it just helps to open up the lungs. So I can cough a bit more easily.

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Speaker 1 (11:14)

Okay.

 

Speaker 2 (11:16)

Erm and then I have to take extra vitamins a de and k because I can't absorb those from my food yeah. A technique, what's called crew, which is digest of enz? I can't digest nutrients from my food.

 

Speaker 2 (11:35)

So I need artificial enzymes to help me with that. I'd take An oral antibiotic called asathramason. Just to manage the bacteria that live in my lungs.

 

Speaker 2 (11:55)

And I think what's called it, it's a gene therapy, it's a very new medication called tricafter And it's basically three different molecules that Kind of very basically trick my genes into behaving a bit more normally.

 

Speaker 1 (12:22)

OK.

 

Speaker 2 (12:23)

Oh, yeah, that's not quite what they do, but it's kind of.

 

Speaker 1 (12:27)

The just a word.

 

Speaker 2 (12:28)

Yeah, yeah, yeah, that's very near. Only started taking that last year. And it's been amazing.

 

Speaker 2 (12:36)

It's like changed my life. And then I Suffer with quite severe depression and anxiety. Take some medications for that.

 

Speaker 2 (12:50)

And then I was also diagnosed with ADHD in a beginning of last year. I was in my mid-thirties when I was diagnosed with ADHD, and so I also take It's a generic on ritzalan elect.

 

Speaker 1 (13:09)

Oh, okay, that's what I And do any of these meths that you take, like, make you feel um. How do I say Wait, let me give you the context cause with me. Sometimes I grow too immune.

 

Speaker 1 (13:27)

If you can say that to the tablet and then it stops working.

 

Speaker 2 (13:31)

Resistance yeah. Yeah, so that has happened. So II forgot to answer part of your question when I go into hospital.

 

Speaker 2 (13:38)

I go onto an IV antibiotic for two weeks. Oh yeah, but the problem is in this task. Your next question.

 

Speaker 2 (13:50)

I'm resistant to most of the antibiotics that they would give me in the hospital, except for one, but I'm highly allergic to that one.

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Speaker 1 (14:00)

Oh.

 

Speaker 2 (14:01)

As in like I stopped breathing. When I'm on it so no so what I have to do is, I have to be on very, very strong antihistamines, while I'm on the drop. So that I don't go into anophilex, so yeah, when I'm in hospital, I'm usually on a very strong antibiotic called Max, a Pam, I think it's called.

 

Speaker 2 (14:33)

But it's ironic because it's a my medical alert bracelet that I'm allergic to it. But it's the actual thing that they put me on, but you're with very strong antihistamines, and it seems to manage it so it makes me very tired. I'm on it and I'm very, very tired because I'm on so many antihistamines.

 

Speaker 2 (14:54)

Bachelor that's greeky, no That's what I go on to when I'm in hospital and sometimes I'll also bring me on like quarters of non and stuff.

 

Speaker 1 (15:06)

Oh, yeah. I know what the court is on. I have to take AD.

 

Speaker 2 (15:11)

If you would to manage the immunosi tank, yeah And yeah, so there's a lot of the intravenous stuff that I'm allergic to, I'm not allergic. I'm resistant to you and a couple of the oral antibiotics that I'm resistant to

 

Speaker 1 (15:32)

Okay, and then are there any certain things like environmentally that make sorry that make cf symptoms worse.

 

Speaker 2 (15:46)

Ya, so for me, it's things like pollution. In the air. Because, you know, the the mucus in my body is so thick that then if there's a lot of pollution, those dirt particles get stuck in the mucus and I can catch erm in developed infections more easily.

 

Speaker 2 (16:14)

So I find like if there's a lot of pollution if we haven't had Rain for a while. My sinus gets really, really bad, because obviously there's a lot of mucus in your nasal passages and stuff. Yeah.

 

Speaker 2 (16:27)

It's a pollution, is something that makes it worse. What else erm stress? I mean, II just think when one is very, very stressed.

 

Speaker 2 (16:39)

You're you're Your resistance in general is low. Yeah, so I'm likely to to it, have a flare up then. And then, of course It is not so much environmental, but just if I'm around like, a lot of people um on a prolonged basis.

 

Speaker 2 (17:04)

So like When I was studying teaching and I'd go into the schools and teaching prack, I'd always get sick because you're just around lots of people, a lot of those people are not, you know, washing their hands after going to the bathroom or they are hagging me. Things like that and not that I I'm saying I can't have hugs from people I can but Like being in a school, I'll pick something up, I'll get sick or um. Ya, I just think places like schools.

 

Speaker 2 (17:42)

Hospitals, I have to wear a mask when I'm going to see my doctor or going to hospital any of those kinds of environments just make a bit more high risk for me. I suppose.

 

Speaker 1 (17:59)

M. How often do you have to go to the hospital or see your doctor?

 

Speaker 2 (18:07)

So It used to be that I was in hospital at least once a year and I'd have to see my doctor every month. But now that I'm on this gene therapy, I only have to see her every 3 months, and I haven't been in hospital since 2022, which is amazing. I'm so excited, yeah, yeah, in fact, in this past March. 

Speaker 2 (18:36)

I had, you know, you would know with your step. She might have to. She have a chemo port.

 

Speaker 1 (18:44)

Yeah, she does.

 

Speaker 2 (18:46)

I had one put in when I was in matrix, and it came up this year because I don't need it anymore because I'm out in hospital all the time. So that I had mine for 17 years. And like ya, when I had it taken out this year, it was like like I lost a little baby friend.

 

Speaker 2 (19:08)

But. It's all that was the technically that was the last time I was in hospital, but it wasn't for. Eviction or anything?

 

Speaker 2 (19:16)

It was just as the the port taken art.

 

Speaker 1 (19:20)

Oh, that's good. Yeah. And then are there any complications that you've had to keep an eye on?

 

Speaker 2 (19:35)

Ya. In, you know, in my lungs, there's a particular bacteria called microbacterium. Which is Tb, but it's not exactly Tb, it's actually called microbacterium other than Tb, just like a cousin of Tb that I caught Speak there, I think it was 20 that made me very, very sick.

 

Speaker 2 (20:12)

And I almost died a couple times and then, but I've never really gotten rid of it. I don't think so I just have to make sure you know that I'm keeping app with my treatments that that doesn't kind of clear app again, because I think we'll see f is you never really get rid of an infection, it just kind of goes a bit dormant, you know yeah? And then it flares up every 9 then, so I've only had one flare up since That was really, really yeah, it was so bad.

 

Speaker 2 (20:47)

But Otherwise, I've managed to keep that at Bay, but that is something that still haunts me. The Albert usually the flare up some are one of the other bacteria that I have grown in my chest. I always joke that I'm more cultured than a type of yoghurt.

 

Speaker 1 (21:14)

And then the last question I have And like how do you restrict your or do you restrict your family members when they have to come Uber or when you have to go to gatherings?

 

Speaker 2 (21:31)

Erm, so usually I don't restrict erm. And there's an understanding that if someone you know, if they've got a cold or Any kind of illness that you can pass on that they just don't come to a family event or they tell me that they're sick. And I'll make the decision whether I'm gonna go or not.

 

Speaker 2 (21:59)

I have had family members that just like rock up and they give me a hug. And then I'm like, how are you and then they're like, I have double pneumonia. And I'm like, what You know?

 

Speaker 2 (22:09)

But that hasn't happened often at all.

 

Speaker 1 (22:12)

Yeah.

 

Speaker 2 (22:15)

Ya I must say my family is very aware of.

 

Speaker 1 (22:20)

Situation.

 

Speaker 2 (22:21)

Yeah, and like I said other they'll tell me in advance that I can make the decision whether I want to go or not or they won't go or they'll, you know, say just stay away from me and we'll do that. But like with covert erm, my husband and I stayed away from family gatherings a lot longer than everyone else. Did you know kind of when things were opening up, the family would get together?

 

Speaker 2 (22:50)

And we just see it Not yet, you know Like, I'd only had one of the vaccinations, and I'm like, I'm not coming out till I've had my booster, and given a little while to for it, too, to build up, you know? Um. And things like that, and I think, but I also think that COVID showed a lot of the world, and I saw it a lot of my family members and friends.

 

Speaker 2 (23:18)

Just how contagious things are. And they had this new respect for when someone like me has got a lower resistance, how contagious things are.

 

Speaker 1 (23:33)

You know?

 

Speaker 2 (23:35)

Um. And I noticed that. And I've had that conversation with a few people that they're like, well, like they were walking around in fear of getting COVID, and they said to me, I don't know how you walk around everyday in fear of getting germs from everybody.

 

Speaker 2 (23:54)

And I said, well, you know, we just did what you were told you practised, good hygiene, you wash your hands, you cover your mouth when you cough, you know, it's basic stuff like that. It also, that's I think God that that's kind of the family. The family's been pretty good all round.

 

Speaker 2 (24:20)

Up to now.

 

Speaker 1 (24:22)

That's good at least they understand and you don't have to worry about getting sick every time you see someone

 

Speaker 2 (24:29)

Oh, my

 

Speaker 1 (24:33)

Well, that's all my questions if you want me to know anything else. You can tell me

 

Speaker 2 (24:40)

Van I can't think of anything off the top of my head. I think Extra, can I think You know, people a lot of what you read when you do research and stuff like that is to do with the physical manifestations of the illness, but there's very little that said or that people want to say about the mental and emotional toll, it takes on you. Yeah And we spoke a bit from the beginning about You know, feet, you don't look sick and it's like, well I'm sorry, I feel sick and do I feel, should I feel guilty for feeling sick and you know, it's those kinds of questions that go through your head.

 

Speaker 2 (25:34)

But also I think, you know, life ISIS hard as it is and dealing with Oh, do I take my maids this morning or I need to order more maids? Their art is stuck. Do I have enough savings and my medical aid mmm?

 

Speaker 2 (25:52)

Oh, my goodness, my friend with c. F has died, and I'm dealing with a bit of guilt, you know, it's like survivor's guilt and You know, those kinds of Things at that just They can't eat away at you a little bit emotionally. And I don't think people talk about that.

 

Speaker 2 (26:14)

They're like, oh well, we're managing the physical symptoms. Well, good job, but actually

 

Speaker 1 (26:19)

The mental part isn't

 

Speaker 2 (26:22)

Yeah, the mental load isn't is huge. It's a huge part of it, you know, and like we said, loving in fear of picking up a germ, you know, when you go shopping at cheekers, type of thing. And And what will my future look like?

 

Speaker 2 (26:43)

And Those kinds of things are nothing. I think it's a big thing with chronic illness in general. So it's not really Anything I don't know if you want to put it in what you're writing, but it's just something that came into my mind.

 

Speaker 2 (27:01)

That There is this mental toll Yeah, that one deals with yeah. And everyday life doesn't stop just because you have a chronic illness. You've got the stresses of everyday life as well.

 

Speaker 1 (27:17)

Exactly.

 

Speaker 2 (27:20)

For you, it's, you know, go to you know, going to school have I done the homework I've got this project. I've got something going on with my friend. Does that you know yeah.

 

Speaker 1 (27:33)

No, I understand it. Well, that from an adult perspective. But from the workload perspective and then

 

Speaker 2 (27:40)

Relationships

 

Speaker 1 (27:42)

And friendships and things like

 

Speaker 2 (27:43)

Egypt family and and commitments, and I are on top of that, you've got your chronic, your chronic situation.

 

Speaker 1 (27:53)

Exactly.

 

Speaker 2 (27:55)

Yeah, it makes laugh. It makes life really hard. But I think I sometimes think that like see if, for me, acts like a bit of a magnifying loss, it makes the hard things even harder.

 

Speaker 2 (28:09)

But it makes the happy things even happier. Yeah. You know?

 

Speaker 1 (28:16)

And I feel like also people with chronic diseases. Tend to they value life and appreciate it more often than people who don't have the experiences we have.

 

Speaker 2 (28:33)

A 100%, exactly. It's like, and I think that's what I mean by the, by the magnifying glass in the positives of sins. Like You know, it like for me with my lungs.

 

Speaker 2 (28:45)

When I hug to the top of a mountain. It's like other people like, yeah, I did it. I'm like, dude.

 

Speaker 2 (28:50)

I did it with you. It's like check me out, you know, yeah, it magnifies the joy. You are.

 

Speaker 2 (29:01)

And uh

 

Speaker 1 (29:04)

And like everything is worth celebrating.

 

Speaker 2 (29:08)

Yes, but it does also make the hard things

 

Speaker 1 (29:11)

Yeah, unfortunately yeah.

 

Speaker 2 (29:16)

Yeah, I think that's that's just those are the thoughts that I have. But you're more than welcome to pop. New, what's up a week chat some more if you need some extra stuff or clarification or anything?

 

Speaker 2 (29:32)

Yep, anytime. Okay, well you just wanna. Yep, whatever.

 

Speaker 1 (29:38)

Thank you so much.

 

Speaker 2 (29:40)

You're welcome. Thank you so much for inviting me to be part of this really exciting project.

 

Speaker 1 (29:47)

You're welcome.

 

Speaker 2 (29:49)

Then look after yourself a care

 

Speaker 1 (29:51)

You too.

 

Speaker 2 (29:52)

Thanks, I bye.

 

Speaker 1 (29:54)

Bye.