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Australian Newbie: 6 months in.. first time realisations
Hi there,
So my name is Charlotte and I'm 23 from Sydney, Australia. I got diagnosed with Wegners 6 months ago and have only recently been brave enough to do any research on it. That may sound ridiculous but at the time I was just so sick that at first I wasn't up to it, then I didn't want to get bogged down on whatever I found online - I just waned to go off what the doctors told me, then I was just scared and finally, curiosity killed the cat and I have ended up here.
January 2013 I was looking forward to a new year. Not that anything was wrong with the last but 2013 was going to be THE YEAR. Then I got an echo in my ears, no pain just an echo. This lasted for a good 5 months to which I got told grommets would fix it - no biggie. Then one morning in May i woke up with what felt like an elephant was sitting on my chest. a visit to the hospital and I was diagnosed with blood clots in my lungs (most probably from my pill) a month of blood thinners and I thought again - no biggie.
Although coming to think of it I just didnt feel right from January. I was always tired, never wanted to do anything. I would go to work, come home and go to bed. Not the usual 22 year old that I had/should have been!
The ear echo turned to excruciating pain and again I woke up with the chest pains - a bunch of luck did come my way when I was in the right place at the right time when I got another onset of chest pains whilst I was at the hospital for a check up of the grommets in my ears. The initial hospital would not send over the xrays of the supposed blood clots thus a new CT scan had to be done. "You have leisions in your lungs" isn't something you want to hear.
The rest is all a bit of a blur as I find I am very good at trying to look through rose tinted glasses and pretend like nothing is going wrong because if i burry myself in other things like reality TV - then I can ignore things that will upset me. Such as the fact I had now been diagnosed with a disease that I had never heard of, had been told there was no cure, it was to be treated with chemotherapy, I would need to undergo IVF, I would not be going to work any time soon, 2 sinus biopsies, 1 lung biopsy, 1 lung resection multiple hospital trips etc etc.
Is now Christmas eve, 6 months later. I have been in and out of hospital for about 3 months of that in total. One being my birthday. I am just glad I am spending Christmas eve in my own bed and Chrtstmas with my family (*Knock on wood*)
I am on prednsione 50mg (have been for 6 months, have put on close to 18 kgs which is hard for everyone especially a 23yr old female) I was on cyclophosphamide for 3 months which made me extremely sick each time I had it and subsequently it wasn't even working, I was then started on rituximab weekly for month and once a moth after that and so far so good as I have had 2 recent hospital visits however the xrays on these visits have been promising!
I have an amazing partner whom is 27 and has been by my bedside day in and day out. What I think has been the hardest to someone my age is the thought of whether or not I will lead a normal life. My partner is the oldest but has 2 brothers with girlfriends the same age as me and we are very close. Since I have been diagnosed both of them have gotten engaged and are currently planning their weddings and new lives together. It's not a matter of "why not me" its a matter of "why me" as not being able to work and consequently not having a means of income has obviously impacted mine and my partners view of how this year would be ending for the 2 of us as well as our plans for the future (IVF included)
As you all would know, and I'm sure feel the same, it's just such a frustrating process especially when the diagnosis can take so long. Hopefully I can learn more being a part of this forum as I have really been taking each day as it comes and just going off what my doctors can tell me. Which in Australia, is limited as there just isn't that much known about the disease. I have so far been told I will be on another 18 months of chemo ontop of the 6 I have already been on. All I want to do is go back to work and back to feeling normal...
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) until you get there. It sounds like your treatment plan is pretty much the standard. Do you have a doctor that specialises in GPA/Wegener's? If not, you may want to look on the Vasculitis Foundation's website to see if there's one close by (should be) whom your local doc can consult with.
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