Asthma misery

[Denae011]

Hi folks I don’t often post but tonight I’m really feeling weepy. I have brittle asthma and due to start those injections on Thursday. I’ve just come out of hospital after yet another asthma flare up. I’m taking nebuliser salbutamol and atrovent Symbicort inhaler. 40 mg of pred. Co amoxyclav 3 times a day and carbocysteine. I’m still very short of breath and wheezing. My chest is just so tight. And I’ve got a terrible cough. I feel a bit afraid and weepy. Yet another night of sitting up in a chair. I don’t know how much salbutamol I should be taking. But I take quite a lot. Does any of you fellow asthmatics take more than 6 nebules per day or more when unwell ?

[elanaoali]

Hi Denae011

I am sorry to hear you are really struggling. I will hope and pray you will get better and be well enough to have your treatment.

Keep posting those her with serve asthma are quick to provide a listening ear.

[Denae011 in reply to elanaoali]

Thank you. Even that reply from you has made me feel a bit better. Xx

[Echoblue]

Hi, so sorry you are having such a grim time. Quite a few of us have had periods of life with very unstable severe asthma and seen far more of an inside of A&E and a hospital in general than we care to mention and my heart goes out to you when it feels never ending.

It really takes it toll on you physically and emotionally so please be gentle with yourself.

The nights can feel long and lonely, but many of us have poor sleep so there will always be someone to “chat to” on this site at any hour! 👍🏻 I find at my worst propping pillows round me tucked in a sofa with my duvet gave me best chance of sleep as corner of the sofa supports me more upright. Cat nap when you can and don’t worry about clock watching, you will catch up on sleep when you can.

On the subject of nebulising I went through a period of Atrovent and Salbutamol every 4 hours day and night and could feel it wearing off after about 2! Do you have an asthma action plan? If in any doubt at all that things are deteriorating further please don’t hesitate to seek further help, be it 111 or 999. If it is daytime, then the lovely Asthma UK nurses give fab support and a knowledgeable ear 👍🏻

I wish you all the very best for a speedy recovery (am sat here nebulising at the moment...... multitasking at its best!😉)

[Denae011 in reply to Echoblue]

Thank u so much for your reply and support. I feel better that I’m not so alone now x

[Echoblue in reply to Denae011]

That’s half the scary part eased! There are so many of us on this group and by sharing support we can all be there for each other in our hour of need. So glad you are feeling that support and I do hope you start to improve very soon. X

[Denae011 in reply to Echoblue]

Thank you so much. Xx

[Jandm]

Hi Denar011

I, like you, are currently sat up all night as yet another chest infection takes place. Third one since August. Caught this beauty after my routine trip to the lung unit 2 days ago!

It is a scary thing, there is no doubt about it.

I take my salbutamol as I need it I don’t restrict my use of it, and do round the clock nebs of vent and atrovent. I keep going until the steroids and the antibiotics take effect.

It’s miserable going through the whole cycle of being unable to sleep due to breathing and drugs, but you are not alone. There is always someone on here who will hear you.

Hope you turn a corner soon.

[Denae011 in reply to Jandm]

Thank u so much for your reply and support. I feel better now that I know I’m not alone x

[EmmaF91 Community Ambassador]

Hi

Hope you feel better soon!

I’d suggest calling your spec hosp (assuming that’s where you’re getting your mab) and asking their advice about what to do, and about your jab. I know everyone with home nebs get different rules (personally I’m only allowed to do 2 a day at home, and after that I have to go to hosp, whereas I do know of others who are allowed 4hrly at home). I know typically in the UK they don’t like you doing more than 4hrly at home as that’s how long salb should last, so if it’s not (and usually when well you’re on less) your hosp may suggest you need to head back in (esp if you’ve worsened since discharge). I know what it is to be in that position, and to be really weeping cause you’re trying your best to stay out but your lungs have other plans.

The other thing is that usually with MABs they don’t want you to be ‘ill’ (ie no colds/infections) as the mab may make it worse (my old spec refused to start mepo until they were 100% I didn’t have virus/bacterial infection causing my asthma flare... 🙄. It was very upsetting and frustrating but you don’t want to trek all the way in to be told no, go to a&e... so thought I’d give you a warning with that...

Good luck and hope you feel better soon x

[Denae011 in reply to EmmaF91]

Thank u so much for your reply and support. The injection is cancelled until I’m a bit more recovered. It’s so comforting knowing I’m not alone xx

[Hidden]

Get well soon.

[Denae011 in reply to Hidden]

Thank u x

[Kelshaw2011]

Hi denae011

I too have severe brittle asthma which has caused the death of my father 2 cousins and my 8 yr old daughter all due to this horrible illness, i have salbut8mol nebs every 4 hours and prn if i need to my consultant said i can have max of 3 bak to bak if i have an attack but if i am getting no relief during the third to go to hospital i also take a lot of tablets including 25mg prednisolone maintenance daily, i have colimycin nebulisers and hypertonic saline nebulisers also. I am on nucala injections and have tried kenalog injections, i still suffer symptoms daily as my asthma is so uncontrollable my consuktant says am on max therapy and basically no more they can do, the bilogical injections do work for many people but not for me hope tou get some relief soon x

[Denae011 in reply to Kelshaw2011]

Ah how awful for you. I’m sorry to hear about your family. It’s a terrible illness to have. I felt so low and weepy last night. I feel better niw I know I’m not so alone in this xx

[Kelshaw2011 in reply to Denae011]

It can lead you to feelin like that my family try to understand but unless you are going through it then u dont completely know just how it feels, i have had many times were i have felt very low and cried non stop but my motto now is that i wont let my illness define who i am and try not to let it rule my life which i know is very hard as you live with symptoms every day stay strong hun xx