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A Long Story.
I know this is going to be very long. I don't expect people to read this but its good therapy to just let this out.
May of 2008 I was headed to the lake with my boyfriend (now husband) as a healthy in shape young lady and my nose starts bleeding out of no where. I remember telling Clint (my husband) I hadn't had a nose bleed since I was a kid. I was 22 at the time. It stopped and nothing else was said the rest of the way about it. I remember once we got to the lake house I felt like I was getting some kind of allergy reaction. Just normal eyes tearing up, runny nose, and headaches. I went through lots of Kleenexes that weekend. From that moment on I had a problem. My so called allergies were not getting better. My nose bleeds were coming on more often and really bad when I would get upset or stressed out. I would be waiting on a customer at work and have to excuse myself because my nose started bleeding. This happened many times. I went to my family physician and said hey I have had these allergies for a month now. I am usually not this bad or barely notice I have allergies. He started prescribing me nasal sprays...well anyone with this disease knows that's a bad idea. They made it so much worse. It was getting painful. Nothing worked with him so he referred me to an allergist. He did all the allergy tests and came back fine. He did a scan of my nose and basically talked to me and my mom like I was snorting drugs. It was an awful experience. He did refer me to an ENT. Dr. Thompson. I couldn't get in to see him until a month away putting me in late August. This was mid July. I was starting to miss a lot of work because of my headaches and the headaches came with the bloody nose. I had one so bad one day I just couldn't take it. My parents took me to the ER. The ER doctor told me I had the worst nose he had ever seen. They did blood work and of course gave me the headache cocktail. My mom called Dr. Thompson office while I was in there and told them I was in the ER. They were able to get me in the next week due to a cancelation. Dr. Thompson treated me with prednisone and could not even get a piece out of my nose for a biopsy because it was so swollen. The inside of my nose was about to come out of my nostrils. I came back a couple weeks later after the prednisone tapering and the inflammation had gone down enough he could get the biopsy. We didn't know this at the time, but Dr. Thompson's daughter actually had a friend hospitalized for WG. So he already had a feeling WG could be the cause of all this stuff. Sure enough about a week later August 16th 2008 he calls me at work himself. He asked me I could go to the side somewhere and told me I had this disease called Wegener's Granulamatosis. He said it was a rare disease and he will explain it when I come in to see him in a couple days. He told me not to be too scared what I read online because we don't know the severity yet. He raised my prednisone to 35mg and referred my to a rheumatologists. During that time of waiting to see this doctor, I went to Vegas with my boyfriend and our friends for his 21st birthday. He proposed there by the wayI was actually getting really sick and miserable and finding myself just staying in the hotel room sleeping because I was miserable. I actually called Dr. Thompson while I was there and he told me to raise my prednisone to 45. I did that and nothing was getting better really. We got back and I saw Dr. Katz. My rheumatologist. He explained everything and began treatment. He raised my prednisone to 60mg and let me tell you I went from a size 2 to a size 13. I gained 40 + IBS. ugh. All my symptoms by this point was all sinus related with the severe headaches. The prednisone itself was not working. I started to have the leg pain I couldn't even walk. So, we had the Cytoxan talk. A bit nervous about it since we wanted kids later but we knew my health was more important at that moment. I was now on 60 mg prednisone and 50mg Cytoxan(pill). I was actually starting to feel a lot better for quite some time. The only thing I was feeling was depression because of how I looked. I was fat in my eyes and my hair was thinning and a different texture. I was sick of how I looked. I wouldn't even go out in public unless I had too. People didn't even recognize me. My fiancé and I with his family actually took a vacation to Hilton Head Island for some R&R. Much needed vacation. December 2008 a couple of my girlfriends and myself went to NYC. I noticed thinking I was getting out of shape and it was freezing was the reason I wasn't breathing very well. I could barely walk down across the street. Once we got back I went to Dr. Thompson and he looked down my throat an nose and did a CT scan of my throat. Those came back later that day showing my trachea was narrowed. The cartilage was eatin away just like the cartilage in my nose was. He told me my trachea was the size of an 8 year olds. He hadn't done a dilation before and he knew the doctors and children's hospital in Cincinnati had done many of them and he trusted them so he sent me there. April of 2009 was my first one. I have had 3 others since then and my last one was November of 2012
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Originally Posted by Miranda
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