[duncanParticipant]

sorry i meant to say

You need to get the best of treatment and i cannot recommend highly enough the National Amyloidosis Center at the Royal Free  , if you haven’t already get your GP to refer you for an assessment and consultation there.

[duncanParticipant]

Hi Linda,

I’m Duncan 52 and living in Torquay Devon.

I got a diagnosis of trachea and bronchial tree amyloidosis 3 years ago. Amyloidosis is a rare thing to have and is different for everyone, there is a lot of scary stuff on the internet that’s not always correct  , i must say this is a very good site to have found, lots of good videos and info in the related conditions section.

You need to get the best of treatment and i cannot recommend the national amyloidosis centre at the Royal Free, if you haven’t already get your GP to refer you for an assessment and consultation there.

 

 

[duncanParticipant]

Hi,

Thanks for the post , no i hadn’t , i go to the royal free every  6 months and a cardio thoracic surgeon lasers my out in plymouth on a regular basis.

 

Thanks for the info on Amyloidosis Awareness on  face book i will check it out.

Bye for now

 

Duncan

 

 

[duncanParticipant]

Hi eve,
Its such a small world i was attached to 29 cdo and cdo log regt spent my last months in Belize with , before leaving the navy nice way to leave.

Sorry its taken so long to get back to you, came into derriford Hospital last Wednesday, to have a routine i thought throat laser, to remove some of these deposits, which build up, ok for me, had a good sleep, but has given my partner and loved ones a worrying few days, unfortunately while they were lazering i arrested in the operating theatre and bled quite a bit ended up having a forced sleep on ICU, ventilated for a few days.

BUT i'm still going strong and more importantly the big two days are coming up, got scan at the Royal Free on Wednesday travelling up by ambulance in the morning .
next time im there will take a pic and post it for Slim its a private dive centre chambers have long gone

http://www.discoverydivers.org/

[duncanParticipant]

Hi Eve,

Thanks for making contact, my partners just got a new ipad, really impressed with it finds it much better than having to carry a laptop round. excuse my ignorance you mention your at kings not sure what a SCT is but will have a look in a minute,but wanted to say hi first. I've had some good news, was phoned today have got a 2 day appointment at the Royal Free for ECG echo cardio gram, and full body scan next week. so hopefully will get some answers re: treatment, its playing on my mind how many laser treatments i have got left before they put a stent into my throat apparently its not pleasant thing to have it would be good to try to stop the deposits building up as quickly as possible before they laser to much away if that's an option.

I was in the royal navy in my former career that's where i got the diving bug, by doing a ships divers course, never really professionally dived i'm more a very keen amateur, but have done a few technical courses since leaving and like deep wrecks and longer bottom times, so perhaps there is a link not sure what your hubby dived on ? my holidays have been tailored around the dives. i had just booked myself to do a re breather course at Bovisand Plymouth over the summer but never mind i'm sure i will find another hobby !

I see from your profile picture your a dog lover. me to i've attached a pic of my baby he's a 4 year old rotty,

Thanks for the advice re ringing Ellen i will try to ring her tomorrow morning and have a chat and see if she can send me some booklets.

I've just looked up SCT, hope all goes well with it for your Hubby, is it his first one ? I wish him the best, again i hear its a painful thing to have done.

Not sure which part of the country your from i'm in Torquay Devon

Thanks Again for getting back,

would be nice to hear how you get on with SCT if you get chance, and if you don't mind wont bombard you but will stay in touch.

Duncan

[duncanParticipant]

Hi everyone,i hope i'm posting in the correct place, apologies if not and a point in the right direction would be appreciated .
Until About 6 weeks ago i considered myself ( no athlete) but quite a fit guy, walked the dog for 2 hrs a day, hard core sub aqua diver, and a very busy job and life, and then on morning of my 49th birthday suddenly felt really unwell, so exhausted that i couldn't physically get out of bed and when managed to collapsed onto the floor and couldn't get my breath. later that day friend, how i don't know, got me to my local A and E department. After a rigid broncosopy and biopsy's and an MRI , i was told i had pneumonia and Amyloidiosis in my tracheal and bronchial tree causing thickening and blocking my airway. I've had a couple of laser treatments removing deposits to keep my airway open, but it hasn't lasted long before symptoms have returned and am having it done again on weds. I've been referred to National Amyloidosis Centre at the Royal Free Hospital in London and im waiting for an appointment. i was wondering if there is anyone else out there going through or gone through broncial and tracheal thickening or Amyloidiosis who could give me some do's and don't tips . i cannot believe how quickly this has happened !. i've been started on dexamethasone which seems to have made me feel a lot better apart from making me really emotional and tearful, which i get really embarrassed about and codine and paracetamol and oramorph for throat pain. Duncan

[duncanParticipant]

Hi everyone,i hope i'm posting in the correct place, apologies if not and a point in the right direction would be appreciated .
Until About 6 weeks ago i considered myself ( no athlete) but quite a fit guy, walked the dog for 2 hrs a day, hard core sub aqua diver, and a very busy job and life, and then on morning of my 49th birthday suddenly felt really unwell, so exhausted that i couldn't physically get out of bed and when managed to collapsed onto the floor and couldn't get my breath. later that day friend, how i don't know, got me to my local A and E department. After a rigid broncosopy and biopsy's and an MRI , i was told i had pneumonia and Amyloidiosis in my tracheal and bronchial tree causing thickening and blocking my airway. I've had a couple of laser treatments removing deposits to keep my airway open, but it hasn't lasted long before symptoms have returned and am having it done again on weds. I've been referred to National Amyloidosis Centre at the Royal Free Hospital in London and im waiting for an appointment. i was wondering if there is anyone else out there going through or gone through broncial and tracheal thickening or Amyloidiosis who could give me some do's and don't tips . i cannot believe how quickly this has happened !. i've been started on dexamethasone which seems to have made me feel a lot better apart from making me really emotional and tearful, which i get really embarrassed about and codine and paracetamol and oramorph for throat pain. Duncan

[Author]

Posts