Met my Chest Doc today and the good news is I am being transferred to a team of Lung specialist in Edinburgh a.s.a.p. to get various tests done to assess the lung damage and to discuss the transplant procedure, All RA meds have been rejected as they could do more serious damage to my Lungs and at this stage I cannot risk any kind of infection, Again im so glad i have this option another couple of bad attacks like i had 4 weeks ago and it would make the transplant harder to carry out,my rheumy said today he has agreed at this stage to try a very mild ra drug that will help with the inflamation and cut down the flare ups and along with half the steriods i am on at the moment i had to cut them by 20mgs over the last week and if i lose a stone in weight mostly fluids along with physio and a special diet he is sure i will get a small percentage of lung space back, i said i hope so as i want to go back to work next month that is my aim there is no reason if we control the flares and a wee bit more breathing space. Looking forward to my first cigarette after the Op. (JOKE) Mattcass
Hi All, Lungs Transplant Is The Only Option For Me. - NRAS
Let's hope that everything gets sorted quickly. I have a (cyber) friend who had a lung transplant a couple of years ago due to cystic fibrosis (at Harefield) - she has done really although she had a scare 2 weeks a go when they thought her body was rejecting them - however it was just pneumonia!!!! Probably one of the few patients to be glad she had pneumonia!!
oh my it puts into perspective for all of us, wishing the very best on the lung transplant xx
Agree with all that has been said above. I hope you don't have to wait too long. xx
Wishing you a short wait and all the best.
Take this as a positive, I know when the word transplant was mentioned to me for the first time It came as quite a shock. Now I'm up for it even though I'm doing quite well on 25% lung function.
If things go very well you could be on the transplant list in 3 to 4 months. If at all possible get the transplant co-ordinators phone number and don't be afraid to pester a little as I had too.My initial referal went missing and I waited 3/4 months for nothing as the co-ordinator new nothing about it.
I had 2 assessments to get through with many tests so I wish you the very best of luck on your journey.
If there is anything you would like to know, I'm always ready to help a fellow sufferer.
That sense of humor will come in handy too.
Well now they have made the decision you should find you get a lot of help to get you ready for the op. So getting fluidoff is great, getting on the liSt is great and get the number of the transplant co ordinator and specialist respiratory nurse. A great source of information (if you haven't come across them) is the British Lung Foundation. A wonderful charity who work with doctors and nurses , a lot of them in the community, and are SO amazing and knowledgeable. Look them up! Keep us posted , the op will be worth it xxxx
Rooting for you to get a new lung Mattcass and feel masses better for it. Xx
Please keep us all updated on your journey through this.
I know nothing about lung transplants so all I can do is listen and support.
Think of a treat for yourself once all over and done with. A holiday or trip or something. You then can research etc on your bad days to keep your mind going
Thinking of you