Feel greatful
Posted , 5 users are following.
I'm 49 from buff. was diagnosed in 2014, went to hospital for flu? (I thought) goodthing i went when I did. They hospitalized me,after a few days, had fever, lymph nodes all swollen, high blood pressure, swollen knees and ankles. and docs. had no ans. after endless test still nothing? then kidneys crashed, I woke up doing dialysis. kidney doc. finally figured it out Wegeners. Ended up doing 6 dialysis treatment s. Several blood transfusions, 6 i.v. cemo treatments. 1yr of cetoxin pill. crazy amounts of prednisone. Spent 68 days in hosp. as of today I've been in remission almost 2 yrs!! I feel blessed! I wish and hope anyone with this crazy dieses the best.
2 likes, 4 replies
marie96185 jeffery_ow73565
Posted
Oh, Jeffery, you did go thru the mill. You are young yet, I was a very healthy 77 year old gal that took care of my own house and yard and walked 6 miles every evening and came down with pneumonia and while I was in the hospital, blood test showed I had Wegener's. They did not know how to treat this disease and was given at one time 27 different RX a day. I was in and out of the hospital the first 8 months. Went to Mayo clinic in Rochester and they told me to throw all my medication away except the Predistone....which I was to wean off of.....after two doses of I.V. chemo a year a part I am now in Remission, taking no drugs for this disease, I am 81 now and nothing like my old self, the fatigue is the worst. Had to give up my home and my old lifestyle and go into a Assistant Living Apartment. Just taking it a day at a time.
Two things I learned from this I want to pass on. If you take a large amount of drugs, you mock the symptoms of diabetics, they were giving me insulin shots in my stomach, and Mayo clinic had me stop....and second if you need to go to a Assistant Living Apartment make sure it is Medicare/Medicaid Approved.
I am in Central Illinois age 81 now.
vidyasampath marie96185
Posted
I went through exactly what you did. my health was slowly degrading and I was losing hope. my creatinine was so high i initially thought I had a kidney failure, the damn doctor mistreated me thinking I had Pneumonia and gave me so many bags of saline which sped up my process of kidney and lung failure, Thankfully they rushed me the the ICU at Mouth Sinai hospital in Downtown toronto and I was diagoned immediatly. Had 32 bags of plasma transfusion and I was just a big roller coster. My 17 year old son is my strongest piller, I am single mom and i put him through so much and without his help and support I wouldn't be where I am today. It's been about 10 months since I got out of the ICU and i'm trying my best to get better. I am currently only 47 and hope that I can defeat Wegner
marie96185 vidyasampath
Posted
Does one ever defeat Wegener's? I was told no, I will have this the rest of my life, the best I can hope for is being in Remission,,,,
Can any one reading this honestly say that they beat this disease....maybe if I was younger I would have a better chance,
Please reply anyone if you are cured.
Marie age 81
joshuapryce1987 jeffery_ow73565
Posted
It took alot for you to be blessed, cherish the moments, and keep working on your health. I believe the more we look after health as we are younger, the better old age will be.