This morning i went to see my consultant (final time as he retiring) i questioned him on my mobility levels as i seem to have reached the point where if i do anymore than this level my asthma is bad for a week after. I asked him if this would always be the case and he was like if that is your level you are doing fantastic better than what we thought you would. Now my level is that on a good day i can manage to walk 150yards to and from local shop in around 45 mins. Without requiring extra reliever.
When he told me this was fantastic was like what?! So now i am left with having to accept this
I was hoping to be able to get back to walking around a supermarket, town centre, the seaside and back to playing sports. Maybe my aims where just too high but all my friends have been saying to me for the last couple of weeks is oh you will get better you will be able to do more soon. And now the answer is no i wont. I am at my best now (well on a good day not thinking of bad day). It is such a big let down! But i guess looking at it the other way, if my consultant thinks i am doing fantastic then i must be i must have achieved a lot! but how do i tell my normal (non asthma and long term condition) friends and family that this is my best and i am not going to get back to doing like them?! It is not like i am being lazy or do not want too, i would love to get back to how i used to be about 4 years ago but clearly my body has been hammered too much so its best is now a lot less.
Thank you for reading i just needed to type it out!
Plumie
6 Replies
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Hi Plumie,
I am really concerned about what your consultant has said. I know you have other conditions, so was his statement based on those conditions or just on your asthma? Do you also have COPD? Asthma is a variable condition and I find it frightening that you have told this is it, get on with it with no hope of it improving.
What meds are you currently on/have you tried. Have you been referred to one of the specialist clinics like Brompton? What is you lung function like normally (fev1) in clinic? What is your reversibilty like after salbutamol?
I would be questioning how his team have come to the conclusion that this is as good as it gets and only expect a deterioration.
How long have you been seeing this consultant and who will you be under now? Hopefully they can give you some answers. If it is really bothering you, do you have a respiritory nurse attached to the clinic you could phone and tell them how you feel? How long until your next appointment?
Hope you get some answers! x
Plumie take some positive from wot he said your doing better than what they thought. I asked my consultant the same question as my range of mobility also down. If I push too hard I pay for it with no control for weeks. He said new treatments are being researched and trials for servere or difficult asthma. He says with new treatments they hope my asthma will get back under control and a reduction in symptoms. Unfortunately my asthma ain't stable for me to take part in the trials at present
Plumie, Sorry to hear you're taking it that now will be your best. Just because the consultant said you're doing better than they expected. It doesn't mean that you still can achieve more. Be patient and while it may not be this year you never know what the future holds. Asthma as you know is a variable condition and you can get better. The consultant never said that you wouldn't make further progress. When you get your new consultant he/she may have fresh ideas and I know Gussypoo has a new consultant who thinks outside the box and will try new ideas.
You poor thing I too would have been gutted if I had been told something similar. I too seem to have reached a plateau where I can walk a reasonable distance but really slowly (the charming boyfriend says I walk so slowly I make his legs hurt). I
As the others said maybe your new consultant will have some fresh ideas, and if not it might be time to ask for a referral to a tertiary referral centre. Are you still having physio, if so how do the physios think you are getting on?
Feel free to rant away, it can really help sometimes!
Bryony
HI folks
It is not just asthma it is all the things put together, i cannot have any different medications that are around because of my other conditions. My physios think i am doing fantatstic. In fact all my medical team think i am doing amazing! It is just me who does not agree. I mainly need to rant rather than replies. but i really did appreciate you replying thank you! I just needed to tell understanding people, who actually know how frustrating health can be.
Hi Plumie, sorry to hear you didn't get the answers you wanted. A new consultant may be a blessing. New treatments are coming out all the time. I've seen the improvement in the last 10 years with my Son and new meds. I know it's just so frustrating and it feels like your life is on hold and I've only got asthma to worry about. Feel free to rant at me, you've helped me out so much.It's good all the health professionals are pleased with you,but sometimes the consultants don't tell you what you want to hear. Been there loads with Matty.
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