Welcome and best wishes as you begin understanding more about WG and how to best deal with the disease. You'll glean a lot of information here, but it's important to realize WG effects each of us...
Type: Posts; User: KathyB
Welcome and best wishes as you begin understanding more about WG and how to best deal with the disease. You'll glean a lot of information here, but it's important to realize WG effects each of us...
I was fortunate with all of my Rtx infusions -- sorry this hasn't been the case for you. I remember the staff monitoring the speed at which I was infused. Slowly, slowly, slowly! My fastest...
Yup, c/o '74! Young at heart! I was very involved in high school and enjoyed it so much more than college! Facebook has been great helping us reconnect. We had a FABULOUS time! Hope you are able...
Sangye????? I didn't know! Do you remember Al? I still miss him ... Sangye though?!
OMG!! Me, too, Debra! All the while having to be "tough" for the kids so they wouldn't worry about their mom. My husband had it worst because while I was fighting in the hospital, he was the one...
I was thinking about you, Pete, traveling back to Ohio a couple weeks ago for my 40th high school reunion (Lorain Catholic HS). Love my Ohio roots!!
Hi Debra! I can add a good report from the eye doctor today, too! The house and farm are just perfect for us! We are hoping to lease the land/barn/pastures to someone in the area. We are just...
Hi all -- I've been in/out of a number of forums and Facebook pages and continue to enjoy the commonalities and information we all share. I've ducked away a few times, but the last time was focusing...
What have I been doing to work out?! Not enough! After surgery this spring (medial meniscus removal), I worked out with a physical therapist. Loved it! But alas a month after being released from...
You seem to be getting up-to-speed on the different symptoms and diseases! Great Job! I've always understood a WG diagnosis is only confirmed through biospy -- kidney, lung, etc. I agree with...
Thx for the wonderful pictures of Phil! It brings a great sense of comfort knowing Phil was in a happy place and that he's no longer in pain. Alysia, I hope you've been able to use your memories of...
Hey Pete! I'm just getting back into posting on this site and was so happy to see you had great test results! Woohoo! Keep up the good work!!
I was diagnosed quickly and the meds kicked in and worked! Rituxan treatments were lifesavers along with prednisone. I'm still on 5 mg prednisone as my maintenance drug. No Rituxan since April...
I'm a bit late with a comment -- hope your appointment went well and you've been able to find answers to your questions! My major involvements are kidneys and lungs. Before dx in 2011, I had...
Hope you had a great birthday, Andrew! Here's to many, many more!!
vunerability
life threatening
life changing
kidney disease
lung capacity
IgG
IgM
kidney biopsy
no cause
no cure
Thanks DRZ and Pete! I'm heading to Richmond in the morning and hope to collect more info on my eye. It may be the long-term prednisone is taking its toll. Won't know any more until tomorrow but...
Hi all -- I've been off the grid for a while and have developed a number of eye conditions in my right eye). The first was in early May -- periorbital cellulitis. Three days of hospitalization and...
Sounds like a great idea for some R & R ... Florida! Where do you visit? My family is on the Gulf Coast. Mom & sis in Venice, brother in Englewood, son in Tampa, son in Orlando! I hope to get...
Hi Anne -- are you a candidate for Rituxan??
KB
Hi mama. I understood prednisone could causes flashes. Mine were more intense/frequent the higher the dose. But I still get them almost every day. My face turns BEET red hot and it flows down...
Hi Victoria. I also have bouts of swelling, mostly in my hands & feet (lots of tingling, stiffness, some cramping), but have no clue why other than fluid retention. Today I was shaving my legs in...
Hi Shannon. My twins are fraternal (one is 6'2" with light colored, straight hair; the other is 6'5" with dark, curly hair!). I have 7 brothers & sisters, but none of us are twins. My grandmother...
Mama -- I will have to look it up, too! Fortunately, I have had no issues with my eyes. Anything you can share is good for us all to learn! Wishing you a positive outcome to your surgery! Annekat...
Welcome Shannonkop! Your story is very interesting and unique. Something I've learned from all the folks in our forum is how similar we are yet each story has its own special twist. I'm the mother...