First write here, but dont know where else to turn. I am a 30 year old male that has spent his whole life with uncontrollable asthma, worked full time until this year...
Chronic chest infections, nebs, high steroids whole year through. Finally referred to a specialist (in july) who arranged tests, i had bloods, a CT and was ment to have a lung function test (still hasn't happened) but have been diagnosed with emphysema, a genetic disorder called Alpha one antitrypsin deficiency, the stomach troubles, and i have a cyst on my left lung on top of my controllable asthma.
As i said, i work(ed) full time, until this year. I work(ed) full time in a school that specialises in mental health, learning and behavioural difficulties, I have spent six wonderful years there. But i have basically not attended work this calendar year due to managing my condition/s. I have tried to work before and during the tests on 5 different occasions, which didnt go well.
Work have now said that they "cannot and will not" support me any more, is there any one who can give me advice for this?
Also on another plea, since my diagnosis, i have been offered no support in a living sense? No GP or specialist will offer me advice on where to go for i suppose; social support (sorry of wrong terminology, first time round 'nd all). I have worked and contributed my whole life and i want to continue doing so.
Thank you to anyone who has the time to write a response.
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Dan1311
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This is awful for someone so young and it’s disgusting the school won’t support you anymore.I hope you have a good consultant ( those are very few ). Regarding work are you in a union .
Hello and welcome. I don’t know anything about employment rights but I would think your place of work has a legal obligation to support you. Even in the crummy conditions in my job, my colleague got sick this year (with cancer) and was supported. Do you belong to a teachers union?
Also I don’t know where you can get support (fear not, someone who knows things will have a helpful reply!) but when I was desperately seeking support and practical advice a few months ago, I found this forum and it’s just the greatest community, with people who are supportive and have so much useful advice. So you’re in the right place 👍
Thank you, I will contact them tomorrow after my disciplinary (I have my union there). I will contact my GP too thank you. Thank you also for the responses from you two, i find it heart warming.
My girlfriend is in bed at the moment, but she will be overjoyed with this. She is a couple of years younger than me, but she has literally kept me going this year; the meds all times of day, the being up all hours coughing or an asthma attack while being sick through my eyes. Theres the downfall of steroids (physically and mentally) that she has without a word, in my wheezy anger (honestly not at her, frustration at the fact i cant control my own body! I simply cannot put into words what she means to me and the man she makes me want to be. But, since rhe diagnosis, i cannot get out of my head that im robbing her of the future we planned and worked so hard for already
Advisory Conciliation and Arbitration Service. Website: acas.org.uk. They helped my son when he had problems with bullying at work. They give independent advice. Hope this helps
Dear Dan, firstly welcome, I'm so sorry to hear things are going wrong at this point in your life. Go to your local Citizens Advice they will offer you advice in relation to your job, you local GP should be able to point you in the right direction for health support, maybe you might be able to approach work and see if you can go part time. This will allow you time to manage your condition.
Please keep us informed about your situation. Stay strong and keep fighting.
Wow thank you everyone. I only joined last night but am amazed by the response. What a great place. Thank you for the suppirt and advice and i will post the outcome of my meeting later.
I am honestly riddled with anxiety i have been up since 6 pacing and throwing up, but this meeting has been hanging over me so long that cime what may, i just want it done and dusted.
Hi Dan so sorry to read of all you’ve been through and are facing. I got sick 3 years ago but wasn’t working due to looking after my young children. However I just wanted to say my Gp didn’t help me when it came to social support but that I just had to figure out I needed support and rang my local adult social services. When I rang they asked me if I needed a care plan but despite having a lot of experience with social services due to being a nurse I said no and just asked to see an Occupational therapist. It took a few months but when she came she was amazing and helped me apply for a support package and referred me into S/S who have since been very good. I hope this helps and that your meeting with work goes well today. Take care
Hi there, welcome. First option has to be seek professional advice on your own personal circumstances. You are still quite young and if you like work then maybe lesser hours might be an answer for you. Not sure your employers answer to your problem was correct but that is their decision. You need to accept that you are disabled due to your health problems so your employment has to take second place and health first. This is just a bad patch in your health with time you may get your health more stable and be able to return to work, every best wish and stay positive. Follow some of the advice given here. Hopefully your girlfreind will support you to change your life to suit your need. Good Luck.
Dear Dan You are a very brave person I cannot say much nor give you advice because I am in an other country if you are in a union go over there too and explain the situation Just do it and speak up I wish you all the best
Hi Dan, sorry to hear of your troubles. I am an Alpha like you, though my health is ok at the moment. There are two uk based Alpha 1 groups that have websites and facebook groups. They can offer an online place to chat plus advice and support including printed materials. Check out Alpha 1 Awareness Uk and Alpha 1 Support Uk. All the best. Z
Good Luck you certainly need more help than you have been given There are people in the union who can help and others have suggested Citizens Advice.Keep in thereand ask for help
Try a salt pipe great for clearing your lungs, I have had asthma for 63 years, had a collapsed lung when I was 18 told j had a cyst then emphysema , so I'm still here after 40 odd years of diagnosis. Had a chest infection 10 years ago antibiotics wouldn't shift it then I bought a salt pipe and it shifted the gunge out my lungs give it a go ....
Sorry to hear what your going through its rough.. I find when your this sick with your lungs it is hard to work so many things can trigger our lung problems... .. I do know people that work at home from the computer maybe there is something there you can do... But having lung problems its going to get worse so support is important .. Look on line for lung support group in your area if there is none then start one yourself.... Plus raise your bed at the head or get a bed that raises I found I'm not coughing during the night and don't wake up full of mucus ... Look into food allergies they cause breathing problems like asthma wheat and corn milk products.... I hope you get your support but Dr's can't help there.. Reach out to family and friends or start a support group....
I wish you the best .I too am an Alpha. I do however live in the US and get infusions to protect my lungs.I do NOT believe these are available in the UK. They are by no means a magic cure all. I was not diagnosed until I was 'severe' and I am now 'very severe' with a FEV-1 of 18%. I take all of the prescribed inhalers and other medication as well. So far I am still able to function -- albeit at a much slower pace.I am on oxygen 15+ plus hours a day at this point.
I note that as perspective .I still work. I wish you the best with your employer. You do need very much to get lung function tests to determine where you are at. Also -- please,please be very careful -- don't smoke, avoid second hand, and other pollutants as much as possible.
I am 64 years old -- so there is a future -- All the Best!
I guess that by now you will have had your interview. From what you say, it does sound as if you are not capable of work just at the moment. If that’s the case then you need to be looking at benefits that you can apply for. Hopefully you will be able to get advice about that from the helpline or Citizens Advice Bureau. Please do not be embarrassed about applying for benefits. A rest from work might help you to focus on improving your health so perhaps it could free you up to do just that.
Regarding symptom control, follow the advice of your respiratory team and ask in particular about lung clearance because that will help lessen the coughing. Sometimes you need to try various medication regimes to find out which works best for you. There is a lot of useful information online. Don’t be afraid to ask for a second opinion if you feel you are not getting anywhere. Some consultants specialise in asthma and may be willing to try different treatments.
Anxiety is common in respiratory disease, so consider seeing the doctor about treatment - medication and/or counselling.
I can understand your feelings about your partner because as a carer I am in a very similar situation. My OH, like you developed asthma when relatively young and it was severe from onset. The incessant coughing is awful, especially during the night. That is why I urge you to concentrate on clearance but you also need to try to remain infection free. I can’t really offer much advice except to talk it through with her. It might help to arrange some kind of respite for her - possibly something like weekends away with a friend.
Please take one step at a time and try not to panic. There are things you can do to improve matters, it just takes time and thought. There is plenty of useful information on here about how to deal with chronic lung disease but don’t get overwhelmed.
My hubby was diagnosed alpha one type ZZ 10 yrs ago when he was 47 yrs old. We live in the USA. It’s genetic. He had to literally aggressively tell his pulmonologist to be straight with him and tell him the truth about his illness. While alpha one isn’t rare, few Drs deal with alpha patients and are not very knowledgeable. I’ve done a lot of research for my husband and I know more than his Drs do. His last PFT, lung test he was Fev1 @ 25% which is labeled stage 4, very severe emphysema. He catches exacerbations quickly before they get bad and goes on antibiotics and prednisone. He has severe air trapping and gets winded easily. Hyperinflated lungs. But he has been able to continue working. He has a job where he directs co workers and they cover for him knowing he’s sick. I doubt he will be working more than one more year due to his breathing. Here in the USA employers must offer people with disabilities the chance to do another job within the company. They can’t just fire them. Our benefit package has short and long term disability insurance. I don’t know if that’s available for you. The meds have helped my husband a lot. There are others who are much sicker than he is that have a milder stage of emphysema. Augmentation therapy is available in the USA but it’s very expensive and in all my research there is no factual proof it slows the disease down as barely 2% of the alpha one protein ever reaches the lungs. We have friends on augmentation that show no slowing of the progression what so ever. It’s a personal decision of course whether one decides to take the augmentation or not. My husband has continued to exercise daily and I feel that is why he’s done as well as he has. He can only walk at this point and not far. This disease is difficult as it’s progression and symptoms are different for everyone that has it. So not really a normal. We did find a respiratory therapist that is very good and explains in detail the PFT results. Drs tend to be reluctant in talking to their patients about details of copd. My husband demands they do. He tells them I want to know it all. The good, the bad and the ugly. My husband likes reality. He did go on an antidepressant and ant anxiety med. have you been told what genetic type of alpha one you have? ZZ or MZ or....
I have returned from my meeting, it went ok. Woman was a but dozy though. Asking me, "do you think your lung condition will ever improve?" Told her may see improvements in the short term but ultimately, no.
We left it basically saying i need counselling, we dont know enough about where my condition/s are at to acuutately try and predict what will happen.
So aftet next round of appointments, will meet again and diacuss my needs and if there are any changes that needed making.
I wanted to take the time to thank you all for your kind messages, great advice and support. It has blown me away, and really helped me get through what was an incredibly anxious time. I just thought, how many people a day are helped by the kind hearted people on this sight, that know what it is like and dont just offer sympathies, also practical advice that is very difficult to come across elsewhere i have found.
I honestly was expecting the worst from that meeting, but it feels they are listening now.
Hi Dan1311 so sorry to hear of your troubles .. try the social work department they helped me so much .. even the unemployed workers were great .. keep calm as you can .. I know it’s a stressful time .. fire all your questions on here some of these lovely caring people really go out there way to help you .. keep us up to date xx
Sorry to hear you are struggling and going through the wars. Go have a chat with your doctor or consultant make a list of all the things you want to ask. I do this and I write the answers down as best I can but it might help. Sounds like you loved your job. I was the same. Have you got any type of teaching qualifications if so maybe you could do home tutoring or something similar could the school not let you work part time maybe tutoring at school with thenvhildren. That way you can sit and work with them. Check with your union. What to do next
Hope you are well, i have another question... i was prescribed an inhaler called Spiriva following my diagnosis (see original post) i think i felt its benefits briefly, before admittedly, i lost it and tried to arrange another, which was hell. I had to drive to 2 different hospitals and walk around until i found someone that would help.
They said they sent prsscription to go who said they would prescribe it as it is quite difficult for a GP to prescribe. I know many are taking it in the UK, so why have i been palmed off with some shitty nasal spray? (sorry about language, my mood isnt great, this keeps winding me up).
Dan - no help to you but I have been (and still am) in exactly the same situation as you but with a different (nebulized) medication. This particular drug can be prescribed by the GP under a particular arrangement. Some doctors will prescribe, some won’t. I’ve written to the GP and fully explained the situation so I am hoping that they can put the mechanism in place for me to order from the surgery, otherwise it’s a twenty something round trip plus other problems - parking etc. Can only suggest that you write to the GP explaining your predicament and say that you are not well enough to be collecting it from the hospital. Hopefully they can help.
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