Hey everyone,
I’ve had quite a bad few months health wise and literally getting by doing the bare minimum, I’ve had to go sick at work again and just feel really bad about it. Finally have another lung function next week and chat with consultant at royal brompton hospital. It’s been a while and need to see what’s happening lungwise, got a few questions to ask aswell!
Hope everyone is coping ok in this miserable weather!
Take care
Lauren x
Hi Lauren!!
Long time no see. 😊 I'm sorry to hear things have been tough. Winter is always bad for us. I hope the discussion with the lung consultant will give you answers and a positive way forward. Thinking of you,
Cas xx 🦋
Hey Cas!
It’s been so long, give me an update on your health? Gagging and choking and not being able to breath is exhausting I don’t know what else to do!
Xx
Hi 😊 I had my transplant last year in July. I'm doing well. I think your first step is your appointment. Then see what they suggest. This is a terrible time of year as well. 😕 Please keep us updated Lauren. xx 🙋
What made them decide to give you a lung transplant?
I’m glad to hear it! What’s recovery like after the transplant?
Lauren x
They only offer transplant if they believe you have less than two years to live (generally), the disease has not responded to treatment and they are out of options. So I suppose that was the main reason. It has not been easy, but I am here. 😊 If you click on my icon you will go to my page. I have written a few posts about post transplant life which may interest you. xx 🍀
I hope your appointment goes well 🤞
Thank you
Hi Lauren, I do hope all turns out well for you next week, Keep us posted. Love n Hugs Hun. C. XXX
I will do an update as having lung function again so will have to see what happens
xxx
Hi Lauren, sorry to hear about your health problems. I hope that things do improve soon and it’s good you will be seeing the consultant at the Royal Brompton as it’s a great hospital.
Do let us know how you get on. Wishing you well. Xxxx
Do you go to that hospital? Thank you so much xx
My husband Pete used to but can’t travel like that now. Xxx
Ahh I see, it’s a bit of a journey for me and dreading it on Monday but will be worth it! Xx
Good luck with your appointment. I hope that you get some answers. Take care xx
thank you, just this weather and can’t shift the choking cough, nothing helps! Xx
Good luck
This weather, particularly the damp, cold and rain in one is the worst for me with bronch. I don't know what it is but when it rains, everything outside smells which then literally suffocates me!
I hope work are being supportive and at least know how to manage things to help you. I have also been off work for three weeks and got back to work yesterday. I have actually got to the point in my life of not worrying or feeling bad about work anymore because the illness is out of my control. With all the will in the world and me looking after myself and doing all the right things, I still get sick. What is most important is that you get the right treatment out there and your health back on track
Good luck with your appointment, Brompton are good most of the time and worth the wait!
Take good care. X
Completely agree! What do you suffer with? Yeah I was I’ll health retired but chose to return to work as health was so good not working just resting all the time but here I am again very poorly! thank you again! X
I have Bronchiectasis.
It it such an unpredictable condition, I can never make forward plans for fear of letting people down which I hate doing.
One year I was so ill and was off work for a long time. Work tried to pressure me into taking ill health retirement but it would have meant that I wouldn't be allowed to work anywhere else and I don't receive any benefits either so I chose to go back to work.
How many days do you work, are your employers supportive?
I think with any of these lung conditions, employers don't generally know how to support us and we have to tell them. I am forever trying to tell my employers that they should not be treating me the same as another person who has no health problems, it is never-ending struggle!
I am so sorry you are poorly. It is so difficult to imagine being well again when you are unwell for so long but you will get there.
X
Yeah I completely know this feeling well! Absolute nightmare and hardly have any friends due to being the ‘let down’.
I was ill health retired and get a pension every month but luckily been able to get another job 3/4 years later as affected my mental health badly!
I work 20 hours a week across 4 days but have to work every sat and Sunday which isn’t ideal as want to spend time with family and partner.
I think it’s so hard for anyone to understand when they don’t experience it first hand but seem to understand more now!
What are your symptoms? I struggle just walking up the stairs or into a shop from the car park, life is very restricted for me and I am only 25. Time is limited with an unusual lung disease sadly!
I cough and cough and choke and can’t breath due to narrowing of the airways, how are your lung functions?
X
I just think if these 'so called' friends have no empathy towards me living with a lung problem, then they were probably not worth my time so their loss!
I was just reading about the condition you have and what you have to avoid which could set things off for your breathing. It is brilliant that you are even working 20 hours - well done you!
I think when people see you so poorly at work just before you get an infection or something, only then, they really see how bad it can get and begin to soften. I used to hide my symptoms at work because I was so embarrassed (the cough sounds horrid), run in the toilets etc. but you soon get past all that.
My symptoms can vary. Mainly coughing all the time and producing lots sputum every day, wheezing, breathlessness, crackling and tight chest and that's usually on normal day.
I always get so breathless and wheezy in those multi story car parks, the car fumes are the worst in those places!
I probably should pay more attention to my lung functions, I really couldn't tell you figures and I think a part of me would rather not know otherwise I just end up fretting more.
You have your LF next week don't you, do you always monitor the figures?
I am just so pleased to have joined this forum and wish I had done years ago. Even though most of us may never meet, it is so incredibly supportive to talk to people that get it.
You must never give up hope and remember that your illness doesn't define who you are.
X
Good luck with your appointment Lauren, hope things get better for you soon x
Thank you so much, means a lot!
Hi Lauren
I went to the Royal Brompton hospital on the 13th January, saw Dr. Molineaxu fantastic bloke, receptionist was a lovely person.
Had blood tests and Spiro tests.
Unfortunately my news wasn't so good, but I am still positive.
Hope you have a good result
Sending you my love and best wishes.
Xx
I was meant to see him but ended up seeing someone different last time.
Aww I’m very sorry to hear this, wondering what my news will bring!
Try and keep positive x
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