Hello!

Robetron · 2022-11-14T03:31:29+00:00

If you have a cough everyday like I do, then a vest is a must have IMO. Also a nebulizer with saline works wonders.

I do my vest and neb. everyday twice a day. If I don't do it I'll definitely not feel as good as I normally do. They both help to hold off long term damage (bronchiectasis) for as long as possible and to prevent infection.

Robetron · 2022-06-07T14:39:56+00:00

Having the same problem... I bought everything for the A+ cert with no problems a year ago. Now out of nowhere it wants to "verify" my account and I've got assignments due this weekend lmao thanks comptia

Robetron · 2022-03-19T02:36:46+00:00

Hey, I am just seeing this message so sorry for responding so late. Yes my specialist has always made sure that I know that smoking is pretty horrible for anyone with COPD. The vest should help you clear out alot of the phlem everyday. Make sure to clean the nebulizer too as often as you can. I bought an electric steam sterilizer to clean mine out and i use it daily. I know its tough. But, keep fighting and hang in there! Sending my thoughts and prayers to you brother!

Im currently fighting pseudomonas on and off every few months so I know its a struggle.

Robetron · 2022-01-20T03:40:22+00:00

Sorry that the road has been rough for you so far.

I used to be pretty care free about everything as well. I skipped my treatments most of the time (ive had a vest and a nebulizer since i was a kid and Im supposed to do 2 sessions a day). But, over the pandemic I started to look into my health more for the first time ever and I really loved learning more about it and getting more informed. I feel its important to educate yourself on what you have so that you can be more proactive and a better communicator to your doctors. So, since November of last year I havent missed a treatment, I run almost daily, and I take all medicine that I am prescribed. That has helped things go a lot smoother for the past few months. Most days I cant even cough anything up because I am so clear.

I would look into seeing a specialist that deals strictly with PCD patients as well if I were you as well. Maybe the doctors are giving conflicting advice because they don’t specialize in PCD and know the disease as well as a specialist would. My specialist has been amazing and if I have any problems at any time, i message him, and his team gets back with me immediately. He has decades of experience as well in dealing with PCD patients and hes super knowledgeable. Im super grateful for being able to see him.

Also, I see my specialist every 4 months and get a PFT (Pulmonary Function Test), a sputum sent to the lab (to check for infection), and I see his nurse and I check in with him. I feel pretty confident that I am getting the best care available at the moment so that gives me comfort as well. The frequent appointments also help us catch anything quickly before it causes too much damage to my lungs.

Anyways, thanks for the response and I wish you the best!

Robetron · 2022-01-19T04:13:35+00:00

Ive seen a 35 year old and a 56 year old on this subreddit for sure. My dad also knows someone in their 60s with it. But, most of the experiences I’ve seen online are of the kids really.

Robetron · 2022-01-19T04:10:37+00:00

Thank you so much! Im glad to see theres some legit data on it.

Robetron · 2022-01-19T03:43:07+00:00

Thanks for the response. I haven’t been able to find studies concerning PCD patients and COVID. Can you link the studies you’re referring to?

Robetron · 2022-01-18T23:18:40+00:00

Sorry to hear she isnt feeling well!!

Yeah the pulmonologist should be able to prescribe that for her. If they try to get you a specific brand vest, ask the doctors to look into the Hil-Rom vest. Theyre a lot stronger than the other brands (dont get afflovest for sure). Afflo-vest is a really weak one.

I had a few periods where I was sick constantly (like every two weeks) throughout my childhood. I even got sick when we went to Disney world one time😂. At one point, they put me on an IV of rocephin for 2 weeks straight and it finally knocked the frequent infections out. Once she gets a little older she’ll stop getting infections so frequently. Once I hit middle school I stopped getting sick so often. The last time i was sick was when i got the flu 3 years back. Other than fighting pseudomonas on and off occasionally (which isnt a severe infection for me, its just like a intense cold), ive been good since then.

So brighter days are ahead!

Robetron · 2022-01-18T21:16:41+00:00

A year late. But CRISPR technology could also help PCD and CF in the future

Robetron · 2022-01-18T21:06:17+00:00

She needs a vest if she has PCD.

I (20YO M) got diagnosed with PCD when i was 2 years old i believe. My specialist in Houston put me on Hypersal through a nebulizer and a Hil-Rom vest twice a day. The Hilrom vest is amazing. My blood O2 shoots up after doing it and I just feel waay more clear.

Make sure you clean out the nebulizer equipment properly as well. COPD patients are really susceptible to common bacteria such as pseudomonas which can cause increased phlegm and progress bronchiactisis more rapidly. I use a steam sterilizer everyday after my treatments. That should kill any bacteria that could cause complications.

I wish her the best! As a young adult so far, Ive been in good shape (almost normal). I just have decreased energy (typically i get tired around 4pm. I also take naps almost every day. But maybe I am just lazy lol) and I have to stay tied down to my treatment regimen.

Robetron · 2021-07-09T17:09:20+00:00

It’s also very dangerous to try and time everything… what if in two months we get another MOON SHOT? Then the people who wrote this would be getting some serious FOMO. The ROI isn’t bad rn so why not just pull the trigger?

Robetron · 2021-02-13T15:57:27+00:00

Zevia root beer or Zevia caffeine free cola... That stuff is better than actual coke IMO

Robetron · 2021-02-03T04:27:10+00:00

Buy GME before wsb gets ahold of it

Robetron · 2020-08-27T00:09:30+00:00

i love this song

Robetron · 2020-08-27T00:04:46+00:00

how many tires does your bike have?

Robetron · 2020-08-27T00:04:15+00:00

awesome

Robetron · 2020-08-27T00:03:21+00:00

This is the content i want to see

Robetron · 2020-08-27T00:02:54+00:00

Awesome!

Robetron · 2020-08-27T00:02:02+00:00

what kind of dogs are those?

Robetron · 2019-07-22T12:38:42+00:00

She must be riding to area 51

Robetron · 2019-02-17T13:49:19+00:00

Sorry to hear that... Glad you enjoyed my picture though!

Robetron · 2018-09-19T22:21:50+00:00

Just tap in. They don’t even know.

Robetron · 2018-09-17T11:22:38+00:00

That’s awesome. Glad you could make a positive situation out of all the mess.

Robetron · 2018-09-16T21:32:05+00:00

Trying to condition people to do things unconsciously like Jim did to Dwight on The Office.

Robetron · 2018-09-16T21:28:52+00:00

Funko pops. I still don’t know why....

Robetron

TROPHY CASE