http://www.rheumatologynews.com/spec...16c2e25ab.html
Good news for those who enjoy a beer now and then....
http://www.rheumatologynews.com/spec...16c2e25ab.html
Good news for those who enjoy a beer now and then....
Hey, now that is good news!
Hey Pete,
Thanks for asking. I'm better and worse at the same time. Had treatment (RTX) on May 30 and June 13, and the WG is improving (the caveatting lesions and granulomas in my lungs are slowly shrinking) however I ended up with pulmonary embolism (or embolus - I guess is the plural). I had crazy crazy leg pain the day after my first treatment, so maybe that's when it happened. Who knows.
I just checked myself out of the hospital this Monday after a four night stay to start treatment for the clots - they wanted to keep me until my o2 sats went above 89% but they haven't made it past that without me sucking some oxygen yet, and I thought it might be an unrealistic expectation not knowing how long I've been hanging out at this rate at. I wanted to do my healing in my home instead of a hospital bed... it's only a few blocks away anyways, so I can go there anytime I need to if the poo hits the fan.
It's all good though because now I know why I've been dragging my butt around like I have and we're dealing with it (medically). With the holes, the granulomas, and the clots in my lungs, there isn't much room for oxygen, but that will sort itself out in no time. Of course there's also the pred wean - ha ha ha... Wegener's Granulomatosis... the gift that keeps on giving. This too shall pass.
Hope all is well in your neck of the woods.
Good to hear from you, Marta! Sounds like you have been having your regular dose of fun. Since there isn't any "get well", I won'd say it, but, instead, hope you get to feeling better.
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
Thanks for the update, Marta. Hope the improvement continues.
All is well here. Cathy and I got back from 24 days in Europe on June 19. We visited France, Germany, Switzerland, Austria, and Scotland. We had a blast.
Now that we're back in the Eastern time zone as far as body rhythm is concerned, we're settling into our summer routine.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
Oh my, marta.. with that joyful spirit of you I wouldnt guess that you have just being through so much, such scary issues.. Thanks God that you are feeling better.
Here is one for you, you sure are this kind of girl ♡ keeping you in my prayers ♡
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Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
You guys rock. Thanks for the support and kind words.
vdub - there isn't a 'get Weg free' but there is a 'get well' and really, despite the challenges, we are all 'well' - look at us go, like a buddy said to me "don't you know who I think I am?" - ha ha.
Pete - wow! sounds like a fantastic holiday!!!! Life is short, with or without WG, so getting all of that under one's belt is quite special... we're here to live the dream and your holiday sure sounds like a wonderful dream to experience. Enjoy the rest of summer. Every single moment of it.
Alysia - not only does my Wegs say that, but so does my family, ha ha ha ha. Just kidding (cuz that can be taken the wrong way) but ya, I am a bit of a scrapper, as you might have noticed, so this is all just another good fight that I know I'm gonna win - emotionally and spiritually for certain, in those realms WG will never take me down.
I sure love your fighting spirit Marta, and also vdub and, actually, everyone on here.
To hear how everyone goes through so much and never complains, well, no where near as much as they should, and then you only find out later on as to what they really went through.
You all ROCK
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
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