Have it all

[Aneres82]

Hi everyone I'm new to the group and any help would be extremely appreciated. I have alpha one amitriptysine deficiency, bronchiectasis and COPD I suffer daily real bad.Also had a lower lobe lobectomy which has caused several issues I deal with .Don't get much help from my doctors and always end up going to the hospital for it. It's always a failed experience.Does anyone have any suggestions to try to help with my problems?.

[peege]

👋 👋 hi, just to wish you a very warm welcome from across the seas.

[sassy59]

Welcome to the forum Aneres. Hope you get some replies soon. Xx

[Izb1]

Hi Aneres82 and welcome to the site. Sorry I cant help with your query I dont know anything about Alpha One Amitriptysine Deficiency but am sure we have a few members with this that will answer you soon. You could put this into the search bar to look back on previous posts which you may find helpful. It sounds like you have alot to put up with and I hope you find some answers to help you x

[Maricopa in reply to Izb1]

I’m a ZZ.

[Izb1 in reply to Maricopa]

Whats a ZZ x

[Maricopa in reply to Izb1]

Alpha one antitrypsin deficiency a genetically inherited condition. You get one gene from each parent. I received a Z gene from each. It means I very little alpha one serum being produced by my liver. We all need this serum to protect our lungs. There’s much more to know however this gives you a basic start. So I’m now stage 4 emphysema very symptomatic.

[Izb1 in reply to Maricopa]

Thank you for this Maricopa I wondered if this zz was re sleeping lol , shows how much I know, at least I now know a little x

[Sweetchilli543 in reply to Maricopa]

Welcome 🙏

[Caspiana]

Hello Aneres. Perhaps it would be helpful for us if you could write more directly what specific problems you are facing? Breathlessness? Fatigue ? Exercise intolerance? Thank you and welcome! 😊👋

[Aneres82 in reply to Caspiana]

Hello.I am constantly very fatigued, breathlessness,don't sleep much lung infections can't excercise.Alot of build up of mucus and phlegm unfortunately it's hard to get it to come out of my chest.

[Caspiana in reply to Aneres82]

Okay that's a great start . Could you write a new post with particular questions? For example, How do people handle fatigue?

Any tips for exercise as I am very breathless?

How do you relieve buildup of phlegm?

You will get more to the point answers. 👋😊

[Alberta56]

Welcome to the forum. I expect you know the usual advice given to people with COPD and bronchiectasis- take as much exercise as you can, eat healthily and do breathing exercises. Have you come across ACB breathing. There are videos showing it on the Asthmalung web site. I doubt if anyone ere will know much about your other condition, but, if you follow Caspiana's advice and tell us what you need help with I'm sure you'll get some useful replies.

[Aneres82 in reply to Alberta56]

Never heard of ACB breathing.But due to all of these problems it has completely changed my life drastically it's hard to do daily tasks without suffering.Im 41 and living like I'm double that age.

[Alberta56 in reply to Aneres82]

Active Controlled Breathing. It helps to bring phlegm up in which nasty bugs can lurk. Any sort of activity which exercises the lungs can help, singing for example. xx

[watergazer]

Hi and welcome. Sorry to hear of your health issues. X

[50shadesofgrey]

hi aneres82, I was only reading yesterday about alpha one amitriptysine. Apparently it’s a genetic condition and inherited condition that increases the risk of lung and liver disease. I’m newly diagnosed with emphysema and I’m starting to exercise and lose weight to try and help with my breathing. Sorry not much help but welcome x

[Numptybrain]

Hi

You are definitely in the right place. When I joined I was like a rabbit in the headlights but everyone welcomed me and listened to everyone’s stories has made me realise I’m definitely not alone anymore. I have different issues to you but like you it affects me daily but I try to take my mind off it by playing solitaire and watching a good drama or true life film.

Take care

Wendy x

[Souielouie]

welcome to this amazing group Andres , I hope that you get the advice you need 🥰

[Patk1]

Welcome to the forum x

[Patk1]

Do u do daily lung clearance? If not,it essential with bronchiectasis that u do,to reduce infections.look on aluk website as they have videos.if u get the mucous up twice a day,it should help x