Hello everyone just joined.

[suemaz]

Hi, I have Chronic Hypersensitivity Pneumonitis, due to bird allergy!. Really struggling now and running out of drug options to try. On steroids, and Cyclophosphamide to try to slow down my deterioration. What I wanted to ask is I have had all the tests done and sent off to Newcastle and am awaiting a call to visit them for a consultation re Lung Transplant. I have been waiting for about 3 months to hear from them is this the norm, or have they lost my test results?!!!. would appreciate any input from you guys. Thanks.

[Chris3]

Sorry I can't offer any input on waiting time for Newcastle but I can sympathise on CHP front. Mine is still responding to steroids. Long may that last. No definite cause was identified so it's difficult to avoid the cause. Hope you don't have long to wait.

[suemaz in reply to Chris3]

Hi Chris, thanks for reply, I can see that you are in a Catch 22 there. I was subjected to birds from early childhood, but only found out about my allergy in adulthood, when I got my kids a budgie each, made me very ill. That was in 1997, got rid of birds and carried on fairly well untill 12 months ago, and I have gone from working as a Nursery Nurse in school, gym member, walking group member to struggling to bathe, dress ect, and we cannot find out why this has happened so quickly. How bad are you?

[Chris3 in reply to suemaz]

At the moment I'm doing really well. Not too good on a hill though. I can go down very quickly and find I too struggle with simple everyday tasks. I'm fortunate that the steroids still seem to be doing something for me.

[suemaz in reply to Chris3]

Thats how I started, inclines and stairs were a no no, but now I struggle to move a few yards on the flat, have a awful cough and choke often. Glad the steroids are doing it for you, they did help when I was on a big dose at first,but now on a reduced dose and I dont feel they help me at all anymore. Have you had a Rheumatoid blood test done, cos I did about 2 yrs ago and I have a high Rheumatoid count in my blood, which can cause your immune system to work overtime and start attacking internal organs that are damaged. May be worth having a read about this. Bye, have a good weekend, avoid the hills!! Sue

[Chris3 in reply to suemaz]

My father had RA and went on to develop PF so I was tested a few times. All the test results for that were normal. You too have a good weekend.

[dall05]

Hi suemaz, from my experience I would advise you to try and talk to a transplant co-ordinator from Newcastle Hospital. I was referred to the transplant team at Birmingham and was told it would take around 3 months before I heard from them. Over 3 months passed and I had heard nothing, so I managed to get one of the transplant co-ordinators phone number. When I spoke to her she could find no record of my referral from my hospital, anyway after they contacted each other I was given a date for transplant assessment and I am now on the list.

It seems that mistakes are made in the system so it pays to check directly with the transplant team just in case.

Tony.

[suemaz in reply to dall05]

Many thanks Tony, just as I suspected really, you sound as if you have the same luck as me (none!), will get on to that after Easter break. Will keep you posted. Sue

[Puffthemagicdragon]

Hi suemaz. Welcome to the forum. I have no answers to your questions as I fall into the emphysema category. I'm sure there are some on here who can help you though.

[suemaz in reply to Puffthemagicdragon]

Thanks for the welcome, got some feed back from others. Happy Easter.

[Suzy6]

Hello welcome. I have emphysema so can't offer any advice. I'm sure someone will be able to help.

[suemaz in reply to Suzy6]

Thanks, yes I have some interesting answers, have a lovely Easter Time!

[MarieW-F]

Just seen this. I am under Newcastle and I waited around 4 months to see the consultant there. They are great. Good luck.

[suemaz]

Hi Marie, thanks for your reply. I presume you are a candidate for a transplant, how long is it since your consultation with them?