Sort of diagnosed...

[CozmoCreepers]

I've finally received a letter from my specialist who has written to my GP and sent me a copy. It says "Her CT scan appears consistent with acute Hypersensitivity Pneumonitis".

From the blood results he believes there to be "slight sensitisation to house dust mites" and the results from my birds is still pending.

I'm freaking out a little bit. Acute! I'm 35...and I feel f****d

My lungs are going to end up killing me Something I always feared was developing some sort of lung disease where I struggled to breath.

I have many questions and no answers and feel like surely the specialist should have at least called me to discuss this all. Or is that not how it works?

[Caspiana]

I am assuming you have a follow up appointment CozmoCreepers ? You must go armed with all your questions and concerns. Like my mum says in the end something gets us all, it's just that we don't expect it to start in our 30s and 40s. 😓 Being ill requires us to be committed to survival. That means maintaining a healthly diet and fitness level, adherence to our medical regime and always working with our doctors to find the best course of treatment. It's a life long committment. We often need to rant and rave too. It's important to get rid of stress. But on the other hand we can't wallow too long. The business of surviving and surviving well is hard work. And not for the faint hearted. But even a wimp like me can do it.

So my advice, for what it's worth. Get on board 100% with working towards acceptance and then grab Hypersensitivity Pneumonitis by the horns and do battle. Get a second and third opinion if you need it. But get answers.

Love and hugs,

Cas xx 🐾🍂

[CozmoCreepers in reply to Caspiana]

My follow up is 19th December, seems an age away. I don't feel I need a 2nd opinion to be fair, I'm happy with how my consultant is diagnosing me, if just a little miffed he didn't call me to explain so I could at least ask some instant questions I had/have, then wait for my review appointment in December.

I'm feeling up and down about my news still, and feel there is more to come (especially as awaiting to hear about the birds), but I'm trying to look at things more productively.

Just sucks as at the moment I'm getting over a head cold, and my coughing is worse than it was, so in my head I'm thinking, is it just cuz of the cold, or is it cuz of the disease? Ugh.

[HungryHufflepuff]

You should have a follow up appointment to explain all this to you and give you the opportunity to ask questions and seek advice. If you don't have an appointment, ask for one. In the meantime you could phone the BLF helpline. It's not something I've ever done but I've seen many people suggest it to others. It seems like a good idea, able to give you support and guidance and some answers to your concerns. Wishing you all the best 🤞

[CozmoCreepers in reply to HungryHufflepuff]

Thank you, I do have an appointment in December. And I will look at calling the helpline to see what they say when I have a day off xx

[gingermusic]

I have suffered with COPD for over 30 years now and just this year from Bronchiectasis as well, Now I use to breed Budgies many years ago and certainly believe that was a big cause towards my lung issues. Please don't think that you have a life sentence as I was only 40 when first diagnosed and now about to have my 70th birthday and feel nowhere near the end of life as yet. So keep smiling eat healthily and exercise as much as you can and you can live a long and happy life.

[CozmoCreepers in reply to gingermusic]

I hope you have a wonderful 70th Birthday! And thank you for the positive reply xx

[Mooka]

Hi CosmoCreepers

I can understand your worries on receiving this letter and you certainly need a follow up appointment to explain this to you. But as someone that has has many misdiagnoses on route to diagnosis of a rare auto immune disease I would look at the working ie appears consistent and believes there to be. When you do get a confirmed diagnosis you should take all the excellent advice offered here. I would also write down all your questions so you don’t forget to ask them. Hope you get some answers soon.

[CozmoCreepers in reply to Mooka]

I'm "happy" with the diagnosis in that I think the doctor is correct in all this given my symptoms. I guess I'm just frustrated with how the news has been delivered to me. But thank you xx

[Jaybird19]

you are entitled to a second opinionbut why not contact his secretary and ask for more either info. or a second appointment .I did that and saw another consultant at oswestry who assessed the way I moved and what i could do. the first just looked at scan, the second looked at me and how I moved and what I could do. .

how long will your tests re bird s be . What breed of birds. not that it makesany differnce. it is the feathers that cause the problem and the feather dust. are they indoor or outdoor? do as caspiana suggests

good luck

[CozmoCreepers in reply to Jaybird19]

I don't feel I need a second opinion, I feel like all my symptoms are leading to the correct diagnosis, its just been a hard pill for me to swallow. I'm not sure how long it will take to hear back about the bird side of things, thats what worries me. I wonder if I'll have to be retested, due to the blood sample being spoiled or clotting or something.

I have different breeds of birds, a budgie, indian ringneck, quaker and barn owls. And it could only just be one of them that have caused my issues, or a couple or all of them. Without testing the feathers of the birds specifically, we don't know. The doc said they'd only test the samples if I was very unwell, which I think is a bit off. And I will talk to him about potentially getting this done. I believe its the barn owls that have caused it due to timelines of when I went downhill tying in with when they started their moult to adult feathers, but I'd still rather know! Even if I have to pay for it myself xx

[Jaybird19 in reply to CozmoCreepers]

You will have antibodies but if you become unwell then the re will be a higher level of antibodies. First there is a screen . If it is positive then a second specimen is requested to compare the levels. This second level can also take a time so a certain time brween the two is specified.

There is also a way of detecting the different immunoglobulin that shows when the initial infection occurred and the different immunoglobulin that develops later. This happened to me when i caught a parasite that affected my eye and i could relate to what exactly had happened to infect me. That took 3 months of visiting eye clinic and blood eventuallysent to appropriate reference laboratory.

So if the blood you had taken was unsuitable then ask for another to be sent.

My knowledge of this is many many years out of date and medicine has developed so much since.

[Jaybird19]

I agree with you about the birds. Is there a bird fanciers association that could help you regarding the possibility of specific tests.i am sure that there would be a blood test for you as believe it is a well known problem. Does it have to be a test for the birds? There certainly is a test for bird borne disease psittacosis , but you probably need one specific for the dust on the feathers . I do think there was something called Bird Fanciers Lung many years ago . Sorry i cannot tell you any more.