My One Year

[Vandole]

idk if i already asked this, but what exactly did it feel like having a new set of lungs when you woke up? did you freak out knowing there's part of someone else's body in you?


need a blog? we can provide this.

[Falaras]

I remember your post from a year ago, both that and this post are pretty inspirational. No clue how you can stay so positive, makes me feel bad for always being negative and having nothing to be negative about!

[Myrrh_Quetz]

idk if i already asked this, but what exactly did it feel like having a new set of lungs when you woke up? did you freak out knowing there's part of someone else's body in you?

You don't really notice anything different. I woke up just being able to breath and I was terrified it wasn't real. It wasn't till I was being discharged that I decided this was real.

[izembo]

glad to see you doing well now. my daughter has CF so I'm having to be aware of this stuff on a daily basis. thankfully she's doing very well, but keeping my fingers crossed for the first major incident.

[Myrrh_Quetz]

Just make sure she keeps exercising, watch her health, catch any cold before it happens, and becareful when she becomes a teenager and she starts the transition from Children's to Adults. That's when a majority of Cfers start going down hill.

[izembo]

yeah, hoping my wife and my immune systems passed on to her, cause we never get sick but something minor every few years. she has had like 2 small colds and just stayed in touch with cf doctors and was fine. thankfully im in atlanta and they have a very nice cf clinic here too at emory.

hopefully her activity stays the same cause this kid never stops moving haha. we do have a vest for her though that she wears to help

[Myrrh_Quetz]

Oh, you're extremely lucky with that vest then. That thing is amazingly expensive and that's what stopped me from ever getting one. And it's not the energy level that's bothersum when they become a teenager. It's that they get switched from Children's to Adults and most all teenagers think they know better.

I'll make a blog post about it actually. It's an important issue that I plan on helping with here. I've known a good dozen Cfs that all got horrible sick because of that transition.

[izembo]

yeah, thankfully we've known since she was 3 weeks old, almost 3 years old now. insurance picked it up around when she turned 2.

[Myrrh_Quetz]

That's good. How's her digestion? I had/have massive problems with mine.

[izembo]

thats definitely the worst part for her currently, stomache aches that destroys appetite if she doesnt have enzymes, constipation, etc.

she's had decent weight gain though, and in the 90% for height

[Myrrh_Quetz]

For me, it's that my body doesn't absorb anything so I have to constantly eat and eat. I have a 2000 dollar a month food bill and that's from Costco.

[izembo]

maybe i'm a bit used to that though, as im like that myself. i weigh 170 and have to eat like 3-4k calories a day to maintain it.

if she wants food, we give it to her pretty much, just gotta keep her above average so she has some to lose if she gets sick

sometimes its obvious when changin a diaper though if there wasnt enough enzymes given to her

[Myrrh_Quetz]

Kids who have CF today sure are lucky. She'll live to be god knows how old before any serious shit happens.

[izembo]

yeah, that was one of the things they told us at first too though, like average age of those living with cf currently is like 37, but if you went back 37 years ago, those people would have been told like 17 or something. so its definitely progressing

[Myrrh_Quetz]

Actually, when I was 13, they told me I wouldn't live to see 25.

[Kuya]

Did they have to tell you that when you were 13?

[Melena]

Doctors are cold like that. My brother at age 7 was home alone after getting home from school and the nurse after asking if our mom was home, told him that his grandfather passed away and to have him tell our mother to call them as soon as she got home. Another friend who has a rare blood cancer was basically told by her doctor she won't live to see her son graduate from high school. It's all sorts of fucked up.

[hey]

To be fair, it's kind of hard to care about someone you don't know dying when you've seen hundreds/thousands of such people die.

[Kuya]

I don't think caring is necessary when it comes to telling a 13 year old that he's gonna die before 25.


edit: i think that's called that social intelligence

[Xajii]

Glad to see you are doing well.

Gotta agree with Kuya though, what a fucked up death sentence. If someone had told me that I'd probably be partying and doing even more stupid shit than I currently have been.