Hi Marcy
I had a CT scan when I was admitted into hospital in June prior to my tracheotomy, and my lungs were OK. As I understand it when I have the reconstructive work done, I will need to have a piece of my trachea removed as this has closed due to scaring and stenosis. He will then join the two good ends up and hopefully everything will be as good as new as it has not effected my vocal cords. Not really sure of the outcome though, just keep my fingers crossed it will be positive. I only see my docs through the public system and don't really have much time with them so therefore don't get to ask too many questions. I had medical insurance for many years prior to getting sick and unfortunately cancelled it as I was healthy and never needed to go to the docs so felt I was wasting money. Also the cost was constantly increasing due to my age . Anyway I cancelled it and 6 months later I was diagnosed with WGs. Dont think I will ever cancel another insurance in my life!!!
I am supposed to be in remission and feel the best Ive felt for a long time. I went for a 15 minute walk last week and went for a 3 km bike ride this weekend so feel I'm getting back into it slowly. I see my spec at the end of September and am going to ask if I can come of the methotrexate and cut down on the prednisone. I hate being on these drugs as the side effects worry me as much as the disease. Also the weight gain cant be good for the heart! Have you put on weight from the methotrexate? I put on a lot of weight with the prednisone, moon face etc but since Ive been on the methotrexate I have noticed the weight increase around my middle even more. I feel like a bloated whale!!!
I am looking forward to getting a flat silver trachie which is coming from the UK and should be here in about 3 weeks so cant wait as the one I have sticks out and is quite restrictive. I will have to have to wear it for at least another 10 months ( I was told originally at least a year) counting down the months.
How long have you had WG Marcy. I'm glad that you are feeling much better.
By the way I am taking Colloidal silver, not sure if it is helping or not but do feel better. Guess its a bit like having health insurance while its working you are scared to stop!
Sounds like you have a good team of docs, are you on the public health or do you have health insurance?
Trish