Hi Marcy
Sorry Ive taken so long to answer you. I was diagnosed with WG 2 years ago. I live in Featherston, Wairarapa, NZ. At the moment I am on 15MG predisone daily and 12.5 MG Methotrexate weekly with Folic Acid 2 days prior to taking the methotrexate. I have had shortness of breath for about a year, but it progressively got worse in May this year. In hindsight I should have been more assertive about my condition to my specialist as I think because I was still working they didnt realise just how bad it was. When visiting the hosptial for my IV Cyclo treatement I would get seen by my rheumatologist after I had been in hosptial for about 4 hours sitting on the bed and of course my breathing would have improved by that time. I found it difficult to talk and walk but as long as I just sat in a chair I was better. When questioned by the intern I would tell him how bad my breathing was, he would note it but that was all that was ever done. He never recommended me to see my ENT spec, so I just thought there was probably nothing that could be done. I have read other peoples problems with shortness of breath and it seems that they go in for some kind of scraping or something. Anyway I went to work one day and decided I just couldn't function properly any more (hadnt really been functioning very well for about a year anyway), so made an appointment with my doctor that afternoon, who luckly got hold of my ENT specialist who said to come in immediately. That was on the Friday and he operated on the Sunday, back in mid June. I will have to have the trachy in for at least a year as with WG any operation can cause it to flare, so am counting down the months (10 months to go hopefully) and then he will reconstruct my trachea and hopefully all will be back to normal. Not really sure about the process, not sure if I want to know too much as sometimes too much information can be really scary. I was rung today by the hospital to say that my silver trachy should be here in about a month so looking forward to that as the one I have is white plastic with a green tube sticking out and is worn with a white band to hold it in, which has to be quite tight around the neck. The inner tube gets blocked all the time so I am constantly cleaning it. It comes with a speaking valve which sticks out the end which makes it look even more rediculous and I find when I put this on the air intake is reduced so feel like someone is strangling me, so I find using my finger to speak is an easier option. It also catapults off if I cough or laugh which has caused a few embarrassing moments. Especially recently, we have a new CEO started at work and I was in his office and thought I would use my speaking valve so that I felt a little more normal, anyway it catapulted off and under his desk and he was on his hands and knees to retreive it. Its quite funny now but at the time it was quite embarrassing! The silver one is flat and has a speaking valve built in and can be worn with a silver chain, so looks a bit like bulky jewelry. So Im counting down the days, life will be a lot easier I'm hoping.
How about yourself Marcy were do you live and how are things for you at the moment. I have been feeling a lot better the last couple of weeks, went for a reasonable 15 min walk around Featherston on the weekend and then again today. I only work 4 days so its quite nice now I usually have Wed off. Still finding my breathing pretty sucky but it is much improved than before the trachy and Im hoping that it will improve with time. Like you I miss my old life and am always hoping that it will return. I am changing my life style to suit my condition, but Ive never been one to sit down for too long, prefering to get out and do physical stuff.
Anyway will send this off, I do tend to go on a lot sometimes but as there is no one to talk to in NZ when I do go on site I do tend to blabber on. Hope you dont mind!!!
All the best Marcy
Kind regards
Trish
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