Uncontrolled asthma

[Doodlebug63]

I am currently in hospital for the third admission since being diagnosed with late onset asthma in September 22.

Since King coronation bank holiday I’ve been on 3 consecutive course of steriods for my asthma in addition to my Forstair NEXTHaler 200/6, Spiriva Respimat and Sabutomol as needed. I also take Amolopdine for Blood pressure and Omeprazole for Silent reflux.

I was admitted again 4 days ago and am currently on more steroids, with Montelukast and Carbosysteine now added to my meds furthermore from tomorrow a nasal spray, Avamys. I am still wheezing and crackling!

The consultant said if I can go without the nebuliser today that will help with the decision to send me home tomorrow and as I don’t actually feel the nebulisers have had any impact I have stopped in the hope I can get home. What is worrying me is that if I still have the wheeze tomorrow will they keep me in? Nothing has changed in the last 2.5 weeks, nor since I’ve been in hospital.

They are awaiting more results from the bloods and there was a mention of referring me to a Severe Asthma Clinic the second day I was in this time but nothing has been mentioned since, I’m presuming they wish to give the new meds a chance first.

However, I’m sitting here in the dark and I’m scared! Scared if not getting home soon as I’m not sure being here is making any difference, scared of what’s next, my life has drastically and suddenly changed. Prior to this diagnosis I hadn’t been near a GP never mind a hospital for about 5 years. It seems at the moment my life is being totally controlled by my asthma rather than my asthma being controlled. I also worry because I look after one of my grandchildren 2 days a week while her parents work and the grandson after nursery for the same. They rely on me and have already had to lose time and pay from work this week while I’m in here.

Should I be pushing for the Severe Asthma Clinic referral?

Any advice please would be much appreciated. Thank you in advance.

[Patk1]

Yr worrying+ anxieties will add to breathing difficulties.try to wind down+ consciously relax,focus on yr breathing.xxx

[Doodlebug63 in reply to Patk1]

thank you! I was have some anxiety last night but do feel calmer this morning. As the person who has always been the ‘doer’ for everyone else I’m finding it all very difficult and quite life changing. I suppose I want ‘normality’ back asap but know that there’s a road to travel - I’d just like someone to give me a clear map! It all feels a bit unclear as to the future at the moment. I need to be patient I suppose.

[Patk1 in reply to Doodlebug63]

I know how U feel and it is hard.i hope ths exacerbation eases and gives u some normality back.i take antihistamines - fenofexadine in morn,Otc loratidine early afternoon+ prescribed montelukast in evening.It's also worth reading up on " controlled breathing techniques"

[Doodlebug63 in reply to Patk1]

thank you. I will look into the breathing techniques.

[Bingo88]

Good morning Doodlebug63. So sorry to hear you are going through a bad time at present. Life is very tough when these health problems come along and the real problem is that we know there is no cure for our Ailments and that's what we overthink about giving us the panic and Anxiety. Hope you get home today and start to feel better soon. Brian

[Bevvy]

Sorry to hear you’re having such a hard time at the moment. There are many different medications available and it can sometimes be difficult to find right one/combination. Also many doctors (and nurses) will look too quickly to change an inhaler not giving it chance to work. Most inhalers are not fully effective for a number of weeks and they are changed almost on a weekly basis!!

I also note your concerns re grandchildren. Stress and anxiety can make things worse so it could be helpful to have a discussion with your children about ways forward in the SHORT term. Basically when being admitted to hospital it can exhaust you as much as original reason you are there. Being woken through the night for blood pressure checks and so on. Noise of other patients etc. I would be surprised if on discharge you are in anyway well enough to look after your grandchildren especially because it sounds like they are young. Maybe family needs to look at alternatives in order for you to make a full recovery…….. by this I’m afraid mean several weeks. Certainly when I have been extremely unwell, as you are, it has taken me quite a time before I was well enough to resume normal activities. BUT eventually I do improve and there is no reason to think you won’t. It could just take some time.

I hope you are discharged and feeling much better soon.

[fraid]

Hope you continue to improve and can get home soon, agree anxiety can exacerbate these things, keep calm and carry on, but slower! I'm sure the hospital won't keep you any longer than necessary. However, as above, it does seem like you do too much, you need time to recover fully. Feel better. 🤗

[Poobah]

Hi Doodlebug, I'm sorry you're having such a rough time.

Firstly, YES, definitely pursue the appointment with the Severe Asthma Clinic. It sounds like you would benefit from consultant level care in order to get back control of your asthma. The clinic is best placed to carry out tests and prescribe targeted treatment.

Secondly, right now you have to put yourself first in order to ensure a good recovery. Family will need to put you first too and make alternative childcare arrangements in the short term. Asthma can be volatile and even if you are discharged, that doesn't equate with returning to your normal day to day activities immediately. You need time to continue your recovery from this attack and failing to do that may see you back in hospital.

It's important to have a discussion with the hospital Dr about immediate aftercare while you await the Severe Asthma Clinic appointment. There should be a plan in place for you to manage your ongoing recovery and what action to take if your symptoms worsen - do they want you straight back in to the ward or are you expected to use your GP. If it's the latter then don't hesitate to use them and don't feel you're ever being a nuisance.

Every discharge has to be a safe one and part of that is discussing next steps and action plans.

Wishing you a good recovery and I hope you're back home soon.

[Homely2 Administrator]

My asthma is very dominated by triggers. I have had three hospitalisations in the last nine months.

If I can minimise the triggers, then the medicines have a chance to keep the asthma under control.

So I would start to think about your personal asthma triggers and come up with a plan to minimise them.

[Birthday60 in reply to Homely2]

good advice - my neighbours son in law has become very ill indeed with asthma but is refusing to give up his 2 dogs!! They now care for the dogs as well as the granddaughter!

[Doodlebug63]

Thank you all so much for your time, kind advice and support.

I am home now, discharged with new meds, informed the Respiratory Clinic will follow up and review and by which time they will have the results of the allergens blood test.

I’m determined to look after myself this time and agree that stress isn’t helping me so I’m looking to find ways to move forward and reduce my stress levels. I also think there will be a need for the conversation about childcare, for the short term at the least.

My inhalers have remained the same, it’s the addition of tablets and nasal spray, which given time will hopefully start to see an improvement and if the blood tests show up certain allergies that will of course make a big difference. There haven’t been any obvious triggers to my hospitisations other than particularly heavy stress periods due to various things happening within the family and trying to juggle caring for grandchildren, an elderly mother and a poorly husband.

I’ll get there and once more thank you for your support during a wobbly moment!

[Homely2 Administrator in reply to Doodlebug63]

Stress definitely can trigger my asthma

[Doodlebug63 in reply to Homely2]

Being totally honest that has been the only common factor each time I’ve been admitted to hospital. I’ve mentioned it to medics but nobody has acknowledged that it could be a cause. Therefore I’m going to try and work on the stress factor myself and see if I can at least build in some coping strategies for those moments when I can feel things building up. Thank you again for your time and support.

[Mandevilla in reply to Doodlebug63]

Stress is one of my biggest triggers. I'm surprised that none of the medical staff acknowledge this as a possibility. Unfortunately, while it might be possible to avoid certain scents, foodstuffs etc, stress is a lot harder to avoid!

I've had to learn not to push myself too hard, to practice calming techniques when I start to get stressed and to find things to do which help me unwind. I've recently taken up painting, and I'm not very good at it, but it's the one thing that makes me switch off completely, and that has really helped with the stress. So try to find something that you can become totally absorbed in when times are stressful.

Also, give yourself time to recover. I had to spend two days in bed at the start of May, and it's only last week that I started to feel fully back to normal. As someone who used to bounce back within a day or two from illness, I've found it really hard to accept how long it takes me to recover now. But stewing over all the things I'm not getting done just makes me worse. Instead, I'm gradually learning to adjust my pace - if I can't rush around, I'll just do what I can at a slower speed, knowing that this will actually speed up recovery far more than pushing myself would do.

Hope you feel better soon x

[Doodlebug63 in reply to Mandevilla]

Thank you for your kind and wise words. I have to take the new week looking into all the non medical things that can help me I think. I’m considering some sort of Calm app so I have an instant thing to listen to on my phone first if all. I like to read when I have time so I shall just have to make time! Then I have to work on me…..accepting that I’m not the same, can’t just carry on as normal when this happens and learning to accept help and say no to others demands when I really don’t feel up to it. In other words starting to put myself first.

It’s hard when in your head you are no older, still as fit as ever when in reality life has changed quite a lot for me. Thank you.

[Gerardt]

cant comment for you only my self here is my story got asthma about 12 years ago first time have been in trouble since you need a good doctor first i had one asthma specialist he was a clown in my mind i panicked i worried life was tough is tough if i had a job with alot of pulling and tearing i could not do it , changed doctors this new guy did more tests and my lungs are fine its the tubes going to them get blocked ??? threw out all carpets got timber floors at the moment i am trying giving up carbs and fasting a bit here and their had to go to hospital for a day lately i am on speriva and symbicort i find that very good i have ventolin also rarely use them IMPORTANT never leave home without my symbicort and ventlin dont do it , remain totally calm at all times it really helps dont panic u will get on with life, i find a hot cup of tea or coffee really helps if things are tightening up , i tied herbal remedies etc though i was cured gave up my meds and ended up in hospital !!!! i persuaded my self i was doing good but not really i am now on a sleep apnea machine as well ,I will never be right but i can get on with life i go in to a and e 2 or 3 times a year they pump me with nebs oxygen and small red steroids deltacortril very bad for u i think but clear u out and get you going for another while th biggest thing is stay calm be happy we above ground every day is an adventure if you want to pm me its motoreditor at yahoo.com its not easy but you can do it

[Doodlebug63 in reply to Gerardt]

Thank you so much for sharing your story.

I am becoming more convinced that stress is becoming an important factor when I have an exacabation that puts me in hospital. When my allergens blood results are back, if negative, I will be more convinced. It will then be a case of getting everyone on board that I’m presently supporting to support me with stress. The trouble is I can’t help being the person that wants to help others and I suppose in turn that has lead to me now becoming the person people turn to when something needs doing. It won’t stop, it wouldn’t be in my nature but I need to manage it more and others expectations. Even as I phoned my Mum yesterday to tell her I was coming home she has a little admin job lined up for me when I see her and straight after showering at home my husband needed me to purchase a train ticket online for him and print off. Not major things to do at all but just felt immediately under some pressure. Just a silly example but these are the constant little things that build up with looking after the grandchildren while parents work and then requests to help at other times too. Like everyone else, life throws tough times at you and I’ve got to learn to manage them for ME now I think. Sorry rambling on a bit here 😂

I’m going to look at my diet, that was something I was already considering and milk in my drinks. As a child I didn’t tolerate milk well and I’ve never drank it, only a little in tea or coffee etc and that in baking, custards etc. as I’ve got older I’ve enjoyed more tea and coffee and wonder whether it’s up the level of milk I can tolerate, so I’m going to trial some oat milk and see if that helps.

We only have carpet in the lounge and when we can afford to do it next then I think that will be another thing that will go.

I’ll get there but by bit; I think I just need to get others on board now and have conversations with them rather than try to just carry on as before. Thanks for your time.

[Mandevilla in reply to Doodlebug63]

Don't be afraid to set boundaries. It's easy to think 'who else will do this if I don't?' but if you weren't here, people would HAVE to find someone else to help. And if they could find someone else to help in that situation, then they can find someone else to help now!

Obviously, you're not going to stop helping at all, but you can set limits.

[Doodlebug63 in reply to Mandevilla]

thank you. It’s very true and I think I just need others to start thinking what they would do I I wasn’t there too.

[Gerardt]

You might just be too helpful my mother i remember when i was a lot younger took in her mother and minded her at home full time she was old had dementia and other problems my dad was out working trying to bring in money and it all fell to my mother it nearly killed her we had 7 or 8 years of it but she did it and lived to be 89 a small thin hardy little woman but you minding your mum, your husband, your grand children if you dont calm it all down you will make yourself sick , i dont know your circumstances or your husband but maybe he has to do more for himself men tend to sit back and let wifey do the stress not always but too much of the time !!!!!!!!

[Doodlebug63 in reply to Gerardt]

😂 he has had a tendency up until this admittance to hospital to do just that. Whilst I’ve been in I’ve guided him through a couple of meals he’s cooked for himself and he learned how to use the washing machine so I think it’s slowly sinking in. 😂

[Gerardt]

he learnet to use the washing machine ?? how old is he

[Doodlebug63 in reply to Gerardt]

72!!!! He was an only child whose Mum did everything for him and didn’t think about him needing those skills. Times have changed and thankfully both my daughter and son are more than capable of running a household and all it entails.

It is in part my own fault too for not pushing him to do things much sooner. He can vacuum and will do the garden but the rubbish out etc but washing, ironing, dusting, cooking no he just hasn’t done them. Time to start a more regular routine of job share I think 😁

[Gerardt]

Oh yeah and not tea or coffee drink more water not tap water well at least not the stuff in my tap if smells of chlorine get at least a litre of water a day in drink it in the evening when you going nowhere you can pee at your leisure !!!!!

[Doodlebug63 in reply to Gerardt]

😁 yes the important pee bit 😂😂

[Gerardt]

i am off to the beach for a few hours great fish and chip van there lets hope that grease is good for asthma I will enjoy a rare treat as i am trying to go carb free or very little but lets not stress over it

[Doodlebug63 in reply to Gerardt]

thank you. Enjoy the sun, sea and fish and chips; a nice little treat.

[Gerardt]

I was also an only son and i learned to cook clean a bit !!! etc I hate gardening and it was my parents pride and joy just cut the grass there was up to my waste strimmed it and then lawnmower hopefully the sun will burn the sh1t out of it next to tackle the back then hedges then cut a few trees clean shoots clean out the fish pond i did not look in for a bout a year but there seem to be loads of fish in it , then kill weeds and paths lots of moss oh jee there is the summer gone later off to the beach !!!!!!!!!

[galathea]

YES, Absolutely push for a referral. My doctor messed around for ages and eventually i insisted on a referral to southampton who are a national centre of excellence. They sorted out my triggers and found the right meds very effectively. The montelucast made little difference and the avamist caused more problems with a blocked respiritary tract than it solved.

[Doodlebug63 in reply to galathea]

Thank you, I feel this is something I do need to pursue as having been discharged a few days ago, the wheeze having gone, I am still left with bubbly, noisy exhalation, which is worse after sleeping and still don’t feel well. I don’t want to end up back in A & E anytime soon.

It’s been a bit of scary journey since last September’s diagnosis, with 3 hospital admission, increasing number of medication and far too many although necessary, courses of steriods, which worries me also.

Thank you, I will see how to pursue this further with my GP this week.