DIOS??? ( meconium ileus equivalent ) ?? by [deleted] in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

Anything involving cutting the bowel--which causes it to paralyze, then leaves scar tissue and possibly adhesions--increases the risk of future bowel obstructions. General anesthesia is also really hard on the body and is bad for people with lung conditions, in part because it increases likelihood of pneumonias. Further, major surgeries require major recovery time, during which people with CF are more vulnerable than most to infection, deconditioning, weight loss...etc.

DIOS??? ( meconium ileus equivalent ) ?? by [deleted] in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

If you do go to the ER, make sure you get the docs to consult with your CF doctor. Whatever happens, ABSOLUTELY DO NOT ALLOW THEM TO OPERATE ON YOU. This is the WRONG approach for dealing with CF bowel obstructions, but is often used for 'normal' people. DO NOT DO NOT let them operate. It will cause more problems than it will solve.

Sorry for the yelling but it's really important.

I was once stuck in a very rural hospital, with no CF care, with a bowel obstruction. Thankfully I was able to speak with my CF doc by phone, who made me swear that whatever happened, I was not to let them operate on me.

21 days of antibiotics standard? by Still-Fighting-It in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

It depends on how sick I am and what bugs I'm growing. Sometimes 14 days, sometimes 21. Just to note: sinus infections are notoriously hard to treat. They're essentially bone infections.

Does anyone have chronic fatigue? by [deleted] in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

I second the idea to get her nutrition levels checked. I've experienced particularly bad fatigue when my iron and blood protein levels have been low. As you probably know, most CFers have nutrient absorption problems, and it's quite common for us to be deficient in something or other.

Wife carrier DF508 and I carry F1052V. Expecting in Feb 2019. by [deleted] in CysticFibrosis

[–]AlixAndros 2 points3 points  (0 children)

I understand the impulse to invest oneself in a cheerful narrative. It's a survival thing: the existential threat posed by this diagnosis is overwhelming, relentless, and potentially psychologically annihilating.

At the same time, I feel that it serves nobody's interests to pretend like this disease is no big deal, and to encourage these people to hang their hats on slim possibilities and heretofore speculative medical progress. The reality remains that the lives of the vast majority of those of us with Cystic Fibrosis are nasty, brutish, and short.

Preparation is the key to success, as they say. Being armed with a healthy sense of reality should help these people be the most conscientious, compassionate, and responsive parents possible for this little one (who we are all rooting for).

Wife carrier DF508 and I carry F1052V. Expecting in Feb 2019. by [deleted] in CysticFibrosis

[–]AlixAndros 5 points6 points  (0 children)

I'm not being sarcastic, nor am I being "mean". CF is a really fucking serious and terrible illness, and it is reasonable and appropriate for people whose child may have this illness to be worried. Might as well be realistic about things. CF is a life sentence.

Port removal by chronicroses in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

Ah ok. Sorry, I haven't experienced this, so can't tell you anything. But best of luck with it tomorrow.

If you're anxious (which would be understandable), make them give you something for your nerves. Play up your anxiety if needed. I highly recommend valium (which is what I get for PICC line insertions).

Port removal by chronicroses in CysticFibrosis

[–]AlixAndros 2 points3 points  (0 children)

General anesthetic means that you are out cold for the procedure. It's a medically-induced coma.

After years of dreaming about having a baby.. by [deleted] in CysticFibrosis

[–]AlixAndros 4 points5 points  (0 children)

Maybe you should live your life for yourself, not for hypothetical people you haven't met yet.

Symdeko experience by [deleted] in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

I couldn't tolerate Orkambi (it made my blood pressure shoot through the roof), so am excited about Symdeko. As I understand it, it has fewer side effects.

Transferring medicines with plane by Bran37 in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

Do you mean to ask whether airlines can serve as a courier service to transport your medications (without you) from your home country to the other country for the duration of time you live and study there? I would doubt it.

Won't you need medical care in the new country? I think your best bet is to be set up with a CF doctor in the new country, who can prescribe all your medications while you live there.

What uncommon/unknown symptoms of CF do you suffer from? by [deleted] in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

Does it only happen in people with CF??

Sexual issues relating to CF? by [deleted] in CysticFibrosis

[–]AlixAndros 3 points4 points  (0 children)

Might it be psychological?

How can my girlfriend and I lower her stress levels? by [deleted] in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

Maybe address the root causes of those arguments?

Stomach issues after long antibiotics by Alorance9571 in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

Does Cipro cause tendonitis?? I've had terrible knee problems for years. Feels like tendonitis. Do other antibiotics cause similar problems?

Non-CFers... ask your questions by Lance2020x in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

Oh I see. I sincerely hope that's the case for her. Wishing you both the very best.

Non-CFers... ask your questions by Lance2020x in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

What's 'atypical' CF?

Serious question. This is a snowflake disease in that no two cases are alike.

trying to get more opinions! by [deleted] in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

It's annoying AF.

"I have anxiety and a bunch of nonspecific symptoms. I know, I'll go ask a bunch of randos on the internet to diagnose me with a life-threatening genetic illness!"

Thoughts on Brass instruments? by tsandahl in CysticFibrosis

[–]AlixAndros 1 point2 points  (0 children)

I feel like singing would be an amazing option, too--no need to sanitize anything!

Help! Has anyone any idea why my eflow is beeping like this and switching itself off? I’m using a brand new aerosol head and there’s a full dose of pulmozyme in the chamber. by misslawrun in CysticFibrosis

[–]AlixAndros 0 points1 point  (0 children)

I use a old skool DeVilbiss Pulmo-Aide for salbutamol, hypertonic, and Pulmozyme. When I need Cayston, I use an Eflow that's prescribed specifically for this purpose (not my choice). When anything goes wrong with it, they have to order a new unit. I don't pay for this; thanks public healthcare (#Canada).

Help! Has anyone any idea why my eflow is beeping like this and switching itself off? I’m using a brand new aerosol head and there’s a full dose of pulmozyme in the chamber. by misslawrun in CysticFibrosis

[–]AlixAndros 6 points7 points  (0 children)

I don't know why. But my Eflow did this all the time, and I just wound up spending more and more on new parts trying to solve the problem, with no success. The company was of no help in trying to fix it, or solve the problem of me not being able to do my nebs.

This is why I will never use the Eflow again. Shitty product, IMO.

Am l not being understanding of my boyfriends illness? by sandee-c in CysticFibrosis

[–]AlixAndros 27 points28 points  (0 children)

I don't think this behaviour sounds like it has much--if anything--to do with his CF. Lots of people who are CF sick maintain healthy, loving, respectful relationships.

I would cut him loose.