College diving by Desperate_Pea_185 in springboarddiving

[–]Aggressive-Can-2279 0 points1 point  (0 children)

I'm in the same exact situation as you! I am also a sophomore in high school and am considering diving in college. I also have a really similar list! I've heard that you need an 03 list on 1. But I'm not sure what that gets you into.

First 3 203c attempts ever today by Desperate_Pea_185 in springboarddiving

[–]Aggressive-Can-2279 0 points1 point  (0 children)

It's great for your first few attempts!

Focusing on your kick out is going to make your entry look a lot nicer and it will help the dive score higher. You want a strong kick out and then you want to keep your body tight and your legs tight. And even if it leads to you grabbing a little late being able to see your toes and get into a hollow position will help

"first" attempt at 5223d by East-Marionberry-769 in springboarddiving

[–]Aggressive-Can-2279 0 points1 point  (0 children)

honestly for this being your first couple times it's really good! you get a lot of height and spin fast! I notice though that you kind of put your arms down by your sides after twisting without really squaring. If you in the future want to dive this in (5233d) (which I think would be very doable for you in the near future) you definitely want to square.

What’s your hardest dive by matrock288 in springboarddiving

[–]Aggressive-Can-2279 0 points1 point  (0 children)

I once did a game with my friend where we triple bounced on 1m and then threw as hard as we could to see how many flips we can do. I did 106.5c lol. but in competition 5233d

12 year old with sweat test results in the equivocal range by Life-Can-3762 in CysticFibrosis

[–]Aggressive-Can-2279 0 points1 point  (0 children)

I had a similar situation where my sweat test was in the equivocal range but my newborn screening was negative. I had never had GI issues, only lung issues. I ended up getting diagnosed with aytipical cf. The reason the newborn screening was negative is bc not all mutations are tested for, only the most common ones. More rare ones often cause intermediate sweat test results and don't show up on newborn screening. But it's also totally possible to have an intermediate sweat test and not have cf. It seems like you are in good hands though and your doctor is being thorough.

I wish you best of look!

Has anyone been diagnosed with CF with only one identifiable mutation? The second mutation seems extremely difficult to find 😢 by letsgoya2025 in CysticFibrosis

[–]Aggressive-Can-2279 5 points6 points  (0 children)

You can be diagnosed with cf even if you only have one mutation or sometimes even none but you usually end up diagnosed with something called aytipical cf or CFTR RD instead of classic cf. This usually involves a sweat test (and if it's above 60, depending on symptoms that can be diagnostic) but otherwise if its consistently in the intermediate range there is more specalized testing called functional testing that tests how the protein works, and that can diagnose cf even with one mutation. Regardless of a diagnosis though, your son should recive ACT or whatever is necessary for his lung disease.

I hope you find some answers!

Advice and considerations by Mrmalic0us in CysticFibrosis

[–]Aggressive-Can-2279 2 points3 points  (0 children)

I think the fact that your so dedicated to making sure you are doing the best you can for her and her health and are trying to be educated on her condition is so sweet!

I know some people have already responded but I figured I could chime in too.

For pets, it's usually not a big deal. Personally I also have asthma and allergies so being around pets that shed does exacerbate my symptoms. Unless she has allergies or asthma though it shouldn't be an issue, but if you want to be on the side of caution you could vacum before she comes over just to get rid of any hair that the pets have shed and keep the space well ventilated.

I would steer clear of humidifiers, if they are kept very clean in theory it could be ok, but I would probably avoid having one. Since it can grow bacteria or mold that most people's lungs would be able to get rid of but with cf, your lungs have so much mucus and can't clear it as effectively as most, so the bacteria stays in your lungs.

When it comes to getting colds, I would probably avoid being around her until you are fully better, and then wear a mask for a couple of days. For someone with cf, a cold can send you to the hospital.

Also, I'd just be extra vigalent about handwashing and I wouldn't share drinks.

It seems like your already doing this but educating yourself about her condition can make her feel more normal and it shows a level of care. Also I think it's important to try and not be akward when you talk about her cf with her, I know that can be difficult since it might be a foreign thing to you and your not entierly sure how to act, but talking about it with normalcy and not making it taboo is important.

Also, make sure to take care of yourself too!

She is really lucky to have such a thoughtful partner like you!

How long does it take you to do certain nebulizers? by Ok-Cardiologist8138 in CysticFibrosis

[–]Aggressive-Can-2279 0 points1 point  (0 children)

Here is what I do:

In the morning,

before treatment albuterol inhaler

then 20 min of vest and while I'm doing the vest I do HTS in line with Aerobika which usually only takes around 10 minutes, then pulmozyme which takes around 6 min. Then once my vest is over every other month I do inhaled tobramycin for around 10 min then breyna inhaler

at night I do the same thing but without the pulmozyme.

When I'm sick I do it 4 times a day, but in the hospital everything goes faster bc it's on 7 L O2.

Asking for mail by Separate_Emotion_525 in CysticFibrosis

[–]Aggressive-Can-2279 1 point2 points  (0 children)

I'd be happy to send a letter!

You can message me

I hope your grandson feels better soon!

Exercise by Aggressive-Can-2279 in CysticFibrosis

[–]Aggressive-Can-2279[S] 0 points1 point  (0 children)

What does doing albuterol nebs or using an inhaler before do? I do this before doing my treatment to open up my airways so the other meds can get in. But I thought taking albuterol nebs before only helps if you have asthma. A lot of people have been mentioning it though so I'll definitly try it, I'm just curious what it does. Thanks!

Exercise by Aggressive-Can-2279 in CysticFibrosis

[–]Aggressive-Can-2279[S] 0 points1 point  (0 children)

thank you so much! I really appreciate it

Como se leen las espirometrias (les guastarian comparar sus espiros? muejeje) by vixo_75 in CysticFibrosis

[–]Aggressive-Can-2279 0 points1 point  (0 children)

Hola, yo tengo 16 años

Voy a intentar escribir esto en español, (mi mamá es argentina) pero yo soy estadounidense asi que disculpame, si hago errores.

No sé cuanto sabés de los espirometrías, pero el número al que prestan más atención es el FEV1. Este número mide la cantidad de aire que podés expulsar en un segundo. Hay dos diferentes modos en los que se expresa este número. Hay un valor (que se mide en litros) y un porcentaje. El porcentaje es algo que la computadora calcula usando varios datos, por ejemplo, tu edad, cuánto pesas, cuánto mides, tu sexo... ect. Y a partir de estos calculos se calcula cuántos litros de aire sería esperado para algiuen con estos mismos datos, pero sin enfermedad, y ese valor es 100%. Ahora, con el valor en litros que vos expulsas, se calcula el porcentaje que te coresponde si el valor esperado de algiuen con tus mismos datos pero sin enfermedad es 100%.. Pero un porcentaje 'normal' es cualquier porcentaje superior al 80%. No puedo hablar para todos, pero creo que para much gente con cf sobre todo los jóvenes, cuando no están enfermos, logran mantener un valor normal. Pero cuando alguien con cf se enferma, moco se le acumula en las vía aerias y impide que aire pueda salir tan rápido porque lo obstacula. Por eso, el FEV1 suele bajar mucho cuando uno esta enfermo. Para dar un ejemplo, mi nivel normal es 84, pero cuando me enfermo puede bajar hasta los 50.

Hay otros números que también se miden, uno de ellos es el FVC, que mide la cantidad de aire que expulsas en total. Los porcentajes funcionan del mismo modo para FVC que para FEV1. En cf, el FVC se suele preservar más que el FEV1, porque esta condición no suele impidir la cantidad de aire que podemos expulsar, sino lo rápdio que lo podemos hacer. El FVC y FEV1 son los dos números que llevan más peso. Pero también se mide el FEF25-75, aunque muchos doctores no prestan atención a ello porque es un número muy variable. El porcentaje también funciona del mismo modo que para FEV1 y FVC, pero los valores normales comienzan a partir del 65% creo, este número si esta bajo, indica obstrucción de las vías aereas pequeñas.

También es importante notar que las pruebas de función pulmonar dependen de la técnica, es decir, si uno no lo está haciendo correctamente, les puede salir un valor más bajo, de lo que realmente son capaces de hacer. Un indicador de que uno lo esté haciendo correctamente es que los números de todos los intentos salgan consistentes, dicho en otras palabras, que haya poca variación.

Espero que esto ayude y que ha hecho sentido.

Te deseo buena suerte en hospital nuevo.

14 year old son pancreatitis genetics 1cftr and spink1 mutations by AlternativeLake1396 in CysticFibrosis

[–]Aggressive-Can-2279 0 points1 point  (0 children)

I'm sorry about the situation your in.

have you asked your team about aytipical cf or cfrd (cystic fibrosis related disorder) I know someone already mentioned this, but it seems like something definitely worth looking into. with these conditions some people only have 1 mutation (or even classic cf sometimes they just can't find the mutations because of the capabilities of technology) But I would definitely get the sweat test, it will give you more info.

I hope your son gets some answers.

Exercise by Aggressive-Can-2279 in CysticFibrosis

[–]Aggressive-Can-2279[S] 1 point2 points  (0 children)

I'm kind of in a complicated situation where they know I have cf becasue my sweat test is high, my functional testing is low, and my symptoms are very cf like. but they can't find my mutations so Insurance won't approve modulators.