waiting for diagnosis!

[redmaggie]

I'm new to this forum, hoping to get great advice! I'm having trouble waiting for a diagnosis for my breathlessness, I try to be patient but I get despondent. I'm 61, otherwise healthy and slim. I've had TB & bronchiectasis a few years back so I know I'll never run a marathon! This year I find I can't do even small things without gasping. I've now had CT scan and spirometry on the NHS but won't see consultant for another 6 weeks. I contacted my GP about the breathlessness in February, and so far only ventolin has been offered, which doesn't work for me...so I asked for a referal. I feel as if I'm left without support, the doctors have been somewhat cold. Does anyone have some words of widom on patience?!!

[hypercat54]

Hi sorry to hear this. I am a bit confused though as I know bronchiectasis is a lung disease which doesn't just disappear or can be cured unlike TB so I am surprised you are not on any meds for it already?

I think you don't need to learn patience but rather the reverse! Those of us with lung problems have to learn to be a lot more proactive and shout loudly when we need help. The way you have been left is disgraceful and I would ring up your consultant and tell them and ask their advice. If they tell the doctor to put you on meds then that should be ok. If not then kick up a storm at your doctors (nicely as you need them ) and demand they help.

Good luck and let us know how you get on. x

[redmaggie in reply to hypercat54]

Thanks for your encouragement Hypercat and littlepom & badbessie. You are right, the lung changes are permenant. I have bronchiectasis in upper lobes caused by the TB - (dry bronchiectasis) so I luckily don't often get the sputum and repeated infections. I've had Psuedomonas twice before but have had a good 5 years without significant infection. But now SOB. Maybe I need more dramatic symptoms to get taken seriously. Now I've had the CT and sprometry (both abnormal) I'll see if I can get an earlier appointment. I'm usually proactive, but yes, this episode has dragged on.

[Hidden]

Hello redmaggie,

I can only agree with everything hypercat has said. Get on to the consultant’s secretary to get this speeded up. I have had lifelong bronchiectasis and I can’t believe that you have been left with a supposed diagnosis but no ongoing treatment or help with management. We really do have to be pro active and vociferous in sourcing our proper treatment. It is your health that they have been neglecting.

[Badbessie]

I think there could be a problem with medical terms here. Do you mean bronchitis? Rather than then more serious condition you mentioned. But whatever the past medical history that your feeling short of breath now should be sorted. I agree with the advice of others.