Help

[Jandm]

i have diagnosed an asthmatic with bronchiectasis and ? Tracheobroncho Malasia. In August I was exposed to paint at work which resulted in an immediate response but a slow build up to being totally dibilitated due to stridor. Three months later I'm on my 7th course of steroids and 6 courses of antibiotics. My gp has told me I'm too complex and doesn't know how to help and apparently my respiratory consultant has the same view. Does anyone out there have the same problem, and who, and what helps them. I can't talk due to breathless unless on steroids and I'm struggling to walk more than 5 yards! Is this it? I am trying to hold down a full time job and I'm on my own but feel like this is the end of the line

[Matman]

That's a tough one. No experience (other than Asthma) but what has become apparent to me is that even Asthma varies significantly from one person to another - which is why it's no longer seen as one illness but a variety of phenotypes (variations) each requiring an optimised treatment approach. Only advice I can offer (if you can afford it) is to first research the web for Thoracic Consultants (British Thoracic Society comes to mind - or something like that) then pay privately to see two or three of the most qualified and prominent ones that specialise in your illnesses - assuming you can't quicly access them for free through a Public Health Service like the NHS. They seem to charge around £350 for the first Consulation - and that's before the cost of Tests is added on (which can really add-up cost wise). However, I'd beg or borrow the money - if necessary - to try and get an improvement, even if it means financial sacrifice elsewhere. I've seen two private consultants who both had different opinions as to my condition and both advocated different treatment ideas. I've found it really helps to research the pants off your condition before seeing a consultant as it may take time to find one that you think is talking sense, and being armed with knowledge will help you ask the consultant questions that may get answers / treatment that helps. Also, research all the Test available for respiratory conditions (e.g. Full Lung Function, FeNO etc) get as many different tests as you can because occsionally - due to financial pressure on the NHS - some tests are not offered in early stages of illness where it's found cheaper to test a patients response to Meds before incurring the cost of expensive tests.

[Jandm in reply to Matman]

Thanks for the response matman. I work for the NHS and my consultant is one of the best but he's ran out of ideas. Time for a new set of eyes and ears. I've been end of line treatment for 9 years now. I do a good online search. I need someone who thinks outside the box. I've been told it's as rare as hens teeth but I need to find a solution other than living in a bubble.

[ChrissieMons in reply to Jandm]

I wonder if anyone who is doing research with a grant from Asthma UK or BLF is doing anything in your area? As you say, new eyes and ears may think of something. I know I'm grasping at straws, but I just wish I could help. The last line of your post shows you feel very sad about all this, absolutely understandable, so you might perhaps need someone to talk to. Ask your GP.

All good wishes.

[Jandm in reply to ChrissieMons]

Thank you for your advice. I shall look into that also. It's a good idea.

Thanks chrissiemons

[Hidden in reply to Jandm]

I'm vey sorry to hear about your desperate and futile struggle to find help. I can feel for you because I have somewhat similar situation. To this date it had been guessed that I maybe have an atipical asthma and had been put on a variety of inhalers montelukast and oral steroids... With no relief from them all! All it had caused was worsening of my symptoms for many months and side effects like heart pain and candidiasis in my airways. I had been at the end of the rope but I finally saw asthma nurse in hospital she said that In her opinion I don't have asthma and told me to ditch all the steroid inhalers and the other tablets which I did. To my amazement I did not feel worse but somewhat better however about the same time I started taking after conducting some research on the Internet Serrapeptase enzyme every day which has highly anti inflammatory properties and some other remedies including ferrum phosphate from an experienced homeopath. As The NHS is under strain I flew abroad for a chest high resolution CT of the chest with a dye which revealed some fibrous changes in my left lung and some small nonspecific nodules which are too small for a biopsy plus some slight hydrostatic changes in the lungs. I still don't know whether this is responsible for my symptoms but as my next appointment with the pulmunologist is only in the end of November I stared taking the above remedies and many more to try and help myself to live through each day. It is however not my intention to tell you to do the same as every case is different but just share my experience and my way of trying to ease my symptoms. The cuts on the NHS worry me significantly as we all will now be slighted and in some instances deprived of the investigations that we need and offered distant appointment times which will make the whole thing even worse. Going private here is only for those who can afford thousands of £ for investigations as just a visit with private consultant may not provide solutions without test results.

[Maryeileen1 in reply to Matman]

Hi Matman, with such a complex diagnosis and very little support from the GP and respiratory consultant a second opinion or referral to a tertiary unit can be requested . You shouldn't have to pay for a consultation . The consultant who is looking after the patient is very obviously out of their depth and should seek advice regarding management of conditions .

When unwell the added pressure of financial implications can just be another unnecessary stress .

Maryeileen

[Jandm in reply to Maryeileen1]

Hi maryeileen

The advice from this forum is so helpful. The best ting I've done by far is to join. You are all immensely helpful and kind. My gps have done their best and see me at a moments notice, and admit they are out of their depth which is incredibly honest of them. Due a bronchoscopy in a few weeks. My consultant mentioned referring me to a cough clinic to suppress my cough, but when I'm in a period of wellness I.e on steroids I barely cough at all. To me that's clutching at straws. I shall be taking up all the suggestions and looking into all of them.

Thank you all so much for your support.

[Maryeileen1]

Hi Jandm ,

Your condition sounds dreadful I'm so sorry for you . I think that you need to be referred to the Brompton or Papworth hospital , a specialist respiratory Centre .

Your condition needs specific management and regular physiotherapy .

The support you are receiving from your GP and respiratory consultant appears very poor , insist on a second opinion or a tertiary referral .

Keep pushing , best wishes Mary Eileen

[Jandm in reply to Maryeileen1]

Consultants only really get to see you when you are well, or your symptoms have been masked by steroids. They base their opinions of you on previously seen patients. That can't be right for everyone. I mentioned that to my consultant and that was his response which I found rather belittling of what I actually go through that they don't witness and that's at a well known respiratory centre. But as I've mentioned, I will look into every suggestion 😃

[Hidden]

How was this diagnosed? Did you have any sophisticated tests to confirm this?

[Jandm]

Hi resolution ct scan, lots of tests and bronchoscopy. Symptoms all match. Reccurrent chest infections etc