New member. Newly diagnosed.

[shadyladylovesslim]

Hello. My name is Amanda. I'm 33 and I live in Missouri, USA. I was diagnosed with GPA in August of this year. It was a very scary deal. I was close to death. I had been sick for months and doctors couldn't figure out what was wrong with me. Constant runny nose, cough, vomiting and nausea, loss of appetite, weakness, dizziness, fatigue, ear pain. I broke my elbow and sprained my wrist the same day from two separate falls that I had because of the dizziness. Originally, I thought I had a bad ear infection. I had pain in my left ear and lost some hearing in that ear for a few weeks. Went to the doctor several times and they found no infection and said my ears looked fine. I got more and more sick as time went on. Spent months in and out of emergency rooms trying to figure out why I wasn't getting any better and antibiotics weren't working. They just kept treating my symptoms and sending me home. Not trying to find the underlying cause. No hospital close to me wanted to admit me to figure out what was goingLouis Finally my grandmother mentioned Barnes Jewish Hospital in St Louis (about 45 minutes from me). We went to their emergency room when I was extremely weak and hadn't kept any food down for over a week. I'm also a type one diabetic so the fact that I couldn't keep food down put me in DKA. They admitted me right away. They had to put me on an insulin drip bc of the DKA so I was admitted to the intensive care unit (ICU). They did a chest x-ray and told me I may have pneumonia bc they found liquid in my lungs. They scheduled a scope for the next day so they could get a closer look at my lungs. That night, I began to cough up blood. They moved my scope to early the next morning. Next thing I know, I wake up 2 and a half days later with an IV in my neck and a breathing tube down my throat. I didn't have pneumonia. It was blood in my lungs caused by the vasculitis. They took a biopsy of my lung to confirm GPA diagnosis. They kept me in a medically induced coma for two days so they could stop the bleeding in my lungs. Had to have 3 blood transfusions and plasma treatments. Was in the hospital for 12 days. I was still very weak, had trouble walking. I'm now on Rituximab and Prednisone. They are watching me closely but I still don't know a lot about this disease. I'm glad i found a group of people that I can relate to about this since it's so rare. Thank you for this opportunity.

[NatriceRomeo]

Hello. My name is Amanda. I'm 33 and I live in Missouri, USA. I was diagnosed with GPA in August of this year. It was a very scary deal. I was close to death. I had been sick for months and doctors couldn't figure out what was wrong with me. Constant runny nose, cough, vomiting and nausea, loss of appetite, weakness, dizziness, fatigue, ear pain. I broke my elbow and sprained my wrist the same day from two separate falls that I had because of the dizziness. Originally, I thought I had a bad ear infection. I had pain in my left ear and lost some hearing in that ear for a few weeks. Went to the doctor several times and they found no infection and said my ears looked fine. I got more and more sick as time went on. Spent months in and out of emergency rooms trying to figure out why I wasn't getting any better and antibiotics weren't working. They just kept treating my symptoms and sending me home. Not trying to find the underlying cause. No hospital close to me wanted to admit me to figure out what was goingLouis Finally my grandmother mentioned Barnes Jewish Hospital in St Louis (about 45 minutes from me). We went to their emergency room when I was extremely weak and hadn't kept any food down for over a week. I'm also a type one diabetic so the fact that I couldn't keep food down put me in DKA. They admitted me right away. They had to put me on an insulin drip bc of the DKA so I was admitted to the intensive care unit (ICU). They did a chest x-ray and told me I may have pneumonia bc they found liquid in my lungs. They scheduled a scope for the next day so they could get a closer look at my lungs. That night, I began to cough up blood. They moved my scope to early the next morning. Next thing I know, I wake up 2 and a half days later with an IV in my neck and a breathing tube down my throat. I didn't have pneumonia. It was blood in my lungs caused by the vasculitis. They took a biopsy of my lung to confirm GPA diagnosis. They kept me in a medically induced coma for two days so they could stop the bleeding in my lungs. Had to have 3 blood transfusions and plasma treatments. Was in the hospital for 12 days. I was still very weak, had trouble walking. I'm now on Rituximab and Prednisone. They are watching me closely but I still don't know a lot about this disease. I'm glad i found a group of people that I can relate to about this since it's so rare. Thank you for this opportunity.

I also live in Missouri and am seen by Barnes. Small world! I recently found this forum as well. Not new to the disease though. This forum makes everything not seem so lonely. Your family can be a great support but it’s a little different when people know about the disease that keeps on giving.


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[shadyladylovesslim]

Barnes is awesome. If not for them, I probably wouldn't be here. So thankful for the doctors and nurses at Big Barnes!

[Pete]

@NatriceRomeo and @shadyladylovesslim - Welcome to the forum to both of you. Sounds like you both had a rough introduction to GPA. I hope you both keep improving. Ask whatever questions you like, feel free to vent your frustrations, and also share your experiences. We can all learn from each other.

[shadyladylovesslim]

@NatriceRomeo and @shadyladylovesslim - Welcome to the forum to both of you. Sounds like you both had a rough introduction to GPA. I hope you both keep improving. Ask whatever questions you like, feel free to vent your frustrations, and also share your experiences. We can all learn from each other.

Thank you for the warm welcome, Pete.

[gilders]

Welcome to the forum.
Feel free to ask any questions. No question is too dumb.

[Rose]

Welcome to the forum.
Feel free to ask any questions. No question is too dumb.

.......and there is a good chance we have come across them before. This is what I found very comforting about this forum. All those weird and wonderful symptoms when, whilst explaining them to the doctors and they look at you as if you are going mad. Before the forum and diagnosis I certainly felt at times that I was going mad!!! It was really reassuring to find on the forum that the weird symptoms that I had, (or have) had been experienced by others suffering from this cruel disease

Welcome

Rose

[shadyladylovesslim]

Thanks so much to all of you! You've made me feel welcome. I'm just glad I can talk to you all about this terrible disease. It's difficult to deal with but this makes it a little easier.

[Alysia]

Welcome to the forum, Amanda, and thanks for sharing your story. Too scary. Thanks God that you are alive and recovering. Rtx is a wonderful med.

That's great, Amanda and Natrice that you live so close to each other. Only a weggie can truelly understand another weggie.