Just came back from sinus biopsy

[John S]

When I'm sick with Wegeners I often question my sense of illness. I frequently doubt it is happening. I'll say , Ow! with a headache, eye irritation or be surprised when my nose gives me a crop of caterpillars. And then I'll say. "I'm not doing that bad". When I call the Doctor I feel like a wuss.
I just had a flare up and a friend that also has GPA told me to insist in care ASAP. I'm glad that he did. This disease causes permanent damage to vital organs. I know that I don't function nearly as well as I did before the onset. I'm afraid of flares causing additional permanent damage.

Keep of pushing for your best care!

[howard]

When I'm sick with Wegeners I often question my sense of illness. I frequently doubt it is happening. I'll say , Ow! with a headache, eye irritation or be surprised when my nose gives me a crop of caterpillars. And then I'll say. "I'm not doing that bad". When I call the Doctor I feel like a wuss.
I just had a flare up and a friend that also has GPA told me to insist in care ASAP. I'm glad that he did. This disease causes permanent damage to vital organs. I know that I don't function nearly as well as I did before the onset. I'm afraid of flares causing additional permanent damage.

Keep of pushing for your best care!

I know exactly how you feel, John.

After a few weeks of everything being unbearable I finally went to urgent care for help because it felt really scary and serious.

The doctor told me I had a COLD and that I "couldn't use urgent care like this."

I've learned 2 extremely important things in the past few weeks:

1. There needs to be some SERIOUS awareness raised for this disease so that people who are just starting to suffer from it don't have to get so bad that they suffer tragic damage to their vital organs.

2. We need to advocate for ourselves extremely strongly and shout "no, there is something seriously wrong with my health. I'm not here to hunt for pain pills and cheap thrills, I want my condition to be believed and I want to be given serious medical care."

I can only imagine how many people have gone to their doctors for so long when they started feeling the effects of GPA and kept getting turned away due to the lack of awareness of this disease. No wonder so many people suffer such horrible things like kidney loss, eye loss, having to have their bowels removed, it's absolutely horrible. This disease CAN be diagnosed BEFORE it destroys people's bodies.

I met with 4 doctors and one ENT over two years (my first flare-up went into remission on its own due to some miracle) and I actually went through a deviated septum surgery over it.

After masses were found in my lungs it took one doctor to listen to me for 10 minutes and actually BELIEVE me and he said "this sounds like a disease called granulomatosis with polyangiitis" and he was right. Just like that he began the process of saving my life and actively removed every obstacle that the healthcare system was trying to put in my way (and there were a LOT of obstacles).

You're not a wuss. You're suffering and you don't deserve to. Doctors need to understand "yes, this is a stomach ache today. In a week I'll need my bowels surgically removed if you do not help me" and do not take "no" for an answer.

[annekat]

Well said, Howard. I have a pulmy and an ENT who have good reputations as docs but completely missed the boat on this. It took a very sharp hospital internist to guess what I really had, especially after seeing the result of a CT scan of my lungs. X-rays just don't show enough. After that, the ENT was totally supportive, was sure what I had, and confirmed it with a nasal biopsy. And was very apologetic for letting it pass for sinus and ear infections for so long. The pulmy, though, still denied it, until calling the ENT about the biopsy results, and then did a 180 and appointed himself as in charge of my case, since the lungs at that time were the worst. He did OK at treating me but is retired now and I have a rheumy who isn't much better. Will probably have to travel a little farther afield for one who really understands WG/GPA....

Sent from my MotoE2(4G-LTE) using Tapatalk