howard
10-15-2017, 03:43 PM
This is more a post about the healthcare system and how it is trained to react to GPA and less about the disease itself. Each of us has that one doctor who saved our life and/or the family members who fought by our side to advocate for us and help us be heard. I want to hear about everyone's experience with the healthcare system when they first started experiencing the effects of GPA, because I have the feeling that I'm not the only one with a story like this and I think that something should definitely be done in the way of awareness of this disease so that more people don't have to suffer multiple tragedies in order to get the care they need and deserve.
Yes, this disease is rare but honestly... it isn't as difficult to diagnose as everyone says it is. The difficult part is actually getting the doctor's attention, because it seems like unless it's as subtle as a broken bone all it's going to get is a "take 2 and call me in the morning."
I'm going to share my experience, but I'd really like to hear everyone else's (I know you've probably all ran through this a hundred times over).
I had my first GPA flare up a year ago in the Summer of 2016. It began as severe sinus pain that would radiate into my teeth, cheeks, and eyes. I was always tired and sweaty. I'm underplaying how severe the pain was because I've partially blacked it out. It was one of the worst experiences of my life. I remember driving home from work in complete tears from the pain, having to stop for a hot decaf coffee because the heat was sort of helping with the tooth pain. I remember using heating pads all night every night even though they didn't really help with the pain... they just felt good and provided a little bit of comfort.
I met with my primary care and explained it all to her, she tried me on azithromycin then augmentin, then eventually referred me to an ENT. It would be 3 months until I could meet with him. He assured me he could cure my infection but that it would just come back until I had an expensive septoplasty/turbinectomy.
Between my doctor and him they tried me on azithromycin, then augmentin, then levofloxacin, then ciprofloxacin, and the only thing that helped was the two rounds of prednisone I was given (which everything would come back worse when they ran out). They didn't even find any bacteria in my sinuses and assumed it was just "some resistant staph infection." Now that I've met an actual ENT, I'm pretty sure the one I met a year ago is just a glorified plastic surgeon. He had more information on botox injections in his office than he did on actual medicine. It would be 2 more months before my surgery.
At one point I complained to my doctor about severe plural pain over my heart. She just sort of went "huh, it must just be a thing. Let me know if it doesn't go away." It went away a few days later but I now have a mysterious soft tissue mass where it happened.
So for 5 months I had to "live" like that. It took all the energy I had to just make it through work (and I worked a desk job that involved minimal human interaction). I couldn't care for myself or my daughter (my wife and I were separated at the time with 50/50 custody and she'd have to watch our daughter almost every day because I just couldn't stay conscious). I'd come home and immediately sleep. All I could really do for 5 months was sleep except for the two times I had prednisone. I actually went out and ran a 5k during the 2nd round of prednisone, it was such a bitter-sweet relief because I wanted to believe it would stay but I knew it would just be worse when it wore off.
Something happened with the surgery that miraculously sent me into remission because I did feel better.
Fast forward to about a month ago (September 8th, 2017). My wife and I are together again. I woke up with extreme plural back pain, but I assumed it was just back pain and bought a new pillow. The next day I woke up feeling like I had over-trained at the gym and had to call into work because I thought I was coming down with something and wanted to rest it off before it got too bad (it's kind of sad looking back and remembering that moment of hope).
Over the next week I started to feel like I was coming down with a cold. Then my joints started aching at night, I would sweat and lose my breath from doing superficial things like putting on my socks or folding laundry, I would become sweaty and feverish over trivial non-physical things (like having to solve a difficult problem at work), I was always tired and couldn't sleep throughout the night at all, constantly waking up soaking wet and hot, aching all over. It began to feel like the flu.
I tried to see my primary doctor but the office told me she dropped me over an unpaid $70 bill from a year ago. I tried finding another doctor but they told me it would be a month before I could be seen, so I had to go to urgent care. I explained everything to urgent care and she gave me some azithromycin and told me to come back if I didn't feel better within 3 days.
After a week it only got worse. All the old severe sinus pain came back and there was a bloody mess coming out of my nose 24/7. I went back to urgent care and explained everything to a different nurse's assistant exactly as it was. I was in severe 8-10 pain all day every day. I had to be very insistent that something was very wrong. She prescribed me some augmentin but I begged her to give me prednisone. She rolled her eyes and said "fine, I'll give you a SMALL dose" like I was just some asshole who was lying to her about my symptoms and was trying to hunt for drugs.
She didn't really believe me because the stuff coming out of my nose was brown/bloody, not yellow/green. She kept asking me if I had a cough and I had to explain that I don't know because my back hurts too bad to cough so when I feel like I have to I just clear my throat. That sneezing feels like being blasted with a shotgun and it's even too painful to blow my nose. Of course I appear perfectly calm while I'm explaining this to her because this is pain that I've become acclimated to, having to live with it 24/7 for the past few weeks. Like how a slowly boiled frog won't jump out of the pot.
"It feels like ice picks are being driven through my eyes and someone's punching me in the nose and teeth all day and that merely breathing agitates a knife that's stabbed in my back, I'm always either on one extreme of being so exhausted I can't stay awake and so sweaty and hot that I can't stay asleep, my knees and ankles hurt so bad I can barely walk up stairs, taking a shower makes me sweat for an hour and putting my socks on makes me run out of breath. I've missed over a week of work in the past few weeks, and everyone's really scared for me. Even the top of my head hurts. Every hair on my head feels like it's on fire. I would not be here if it was not really, really bad." was about as descriptive as I could be but I'm pretty-sure she thought I was lying to try and get some pain pills. She diagnosed me with a sinus infection and told me to call an ENT.
The prednisone was the eye of the storm. I was still treating this like a sinus infection so I did my best to try and clean it out while I had a window of opportunity (3x saline rinse every day with a sinupulse, steam hood at night, manuka honey rinse and tea tree oil diffusion to try and kill the "staph infection"). The manuka honey actually healed the scabbing and bleeding (what a miracle) but my sinuses were now so raw and enflamed that it felt like severe allergies. I thought I had healed my nose and that the over-rinsing was doing more harm than good in terms of protecting my sinuses so I stopped. Within a day the bleeding started again.
The pain was coming from my septum, not my sinuses. It was just radiating to everything in my face. Throughout all of this I'm close to overdose levels of ibuprofen and acetaminophen, which were doing almost nothing.
After the prednisone was gone the back pain came back with a vengeance. A few days later the back pain became chest pain and was spreading to my shoulder. I was sitting at my desk at work running out of breath and decided I had to go to the ER.
I went back to urgent care with the intent of getting an x-ray (to save time and money) and using that to segue into the ER. I saw the same woman as before, explained everything to her before and she basically told me there was nothing she could do. I told her I needed an x-ray and she clapped her folder shut, perked up and smiled, and said "ok, sit tight."
45 minutes later she returned pale as a ghost, explaining that they found multiple soft tissues in my lungs and that I would need to go to the ER for a CT scan. I honestly wasn't surprised, I was just disappointed. I felt so betrayed and forsaken and sad for my family having to watch me go through this. She even suggested I take an ambulance and I had to look her in the eyes and tell her that I drove myself from an hour away and have been living like this for the past month, that I would drive myself.
A week ago she told me not to use urgent care for things like this and told me to get a doctor.
I was in the ER with my parents as my wife was home with our daughter, we had to tell her that I had to work late because we didn't want to scare her. The PA in the ER didn't even look at my x-ray and tried telling me that too many doctors over-prescribe CT scans and that he wasn't going to give me one. We all just looked at each other then looked at him and told him we already have an x-ray... that's why we were here. His face went red and he left the room. I had a CT scan not too long afterwards.
He set me up with a pulmonologist in town and I finally got some actual pain medication and a real dose of prednisone. I called the next day for an appointment and was told they wouldn't see me because I wasn't referred by a primary care doctor. I can only assume my family called them screaming in tears because I was given an appointment the next day.
The day before I was told I wouldn't be able to meet with the pulmonologist for another 10 weeks.
I met with a pulmonologist who listened to me for 10 minutes and actually believed me. That's all it took. He told me he thinks I may have a disease called granulomatosis with polyangiitis and that I should go get some lunch with my family, come back for bloodwork. This doctor saved my life that day and spent every day of the next week kicking through every obstacle that the healthcare system was trying to put in my way just so I could get some attention from doctors. He set me up to meet with my new primary care doctor that day.
I was told I wouldn't be able to even meet my primary care doctor until next week and he got me in within an hour.
He referred me to a medical university. Their intake nurse turned me away saying that I "didn't have enough" to see a pulmonologist must less a rheumatologist and she set me up for an appointment a month away. My pulmonologist was furious... livid. He told me to go to the ER and told me what to say to them.
Well, the next morning I woke up with 10 pain in my eyes feeling like they were being seared out of my skull. My wife drove me to the medical university ER and we waited. After 2 CT scans a PA asked us "what we hoped to accomplish by visiting the ER today." I said "I'd like to meet with a pulmonologist today." He told us that would be impossible.
A few hours later I was admitted for inpatient. A few hours later I had met with my rheumatologist, his fellow, multiple attending doctors, students, staff, and the next morning met with two teams of pulmonologists. Shortly afterwards I was diagnosed with GPA.
The day before I was told I wouldn't be able to meet with a doctor at the hospital for another month.
A month ago I was told I had a cold.
How many people feel sick as hell for weeks and take that appointment 10 weeks from now but don't actually get seen by anybody until they wake up one morning with kidney failure? Or blurred vision, or hearing loss, or stabbing pains in their gut, or coughing up blood? Have to have kidney transplants, plasma transplants, bone marrow biopsies, chunks of their lungs cut out, their noses collapse, their vision disappear, their intestines removed?
Is this because of (a) complete absence of awareness of GPA or (b) complete absence of compassion in the healthcare system? Because doctors and nurses either (a) don't know or (b) don't care about the warning signs?
If I didn't have that one doctor to listen to me, believe me, advocate for me, and knock down every administrative roadblock I encountered I would probably be dead or close to it. If I didn't have family members to fight by my side and speak up for me I would probably be dead or close to it.
Based on my experienced (I know this isn't everybody's experience), GPA only seems so deadly because of all the hurdles and roadblocks that the healthcare system puts in its way to actually get attention, diagnosis, and treatment before it has a chance to ravage people's bodies.
Is this a common occurrence? I'm really curious if anyone else suffered because of inaction on the part of hospitals, clinics, and healthcare staff.
Yes, this disease is rare but honestly... it isn't as difficult to diagnose as everyone says it is. The difficult part is actually getting the doctor's attention, because it seems like unless it's as subtle as a broken bone all it's going to get is a "take 2 and call me in the morning."
I'm going to share my experience, but I'd really like to hear everyone else's (I know you've probably all ran through this a hundred times over).
I had my first GPA flare up a year ago in the Summer of 2016. It began as severe sinus pain that would radiate into my teeth, cheeks, and eyes. I was always tired and sweaty. I'm underplaying how severe the pain was because I've partially blacked it out. It was one of the worst experiences of my life. I remember driving home from work in complete tears from the pain, having to stop for a hot decaf coffee because the heat was sort of helping with the tooth pain. I remember using heating pads all night every night even though they didn't really help with the pain... they just felt good and provided a little bit of comfort.
I met with my primary care and explained it all to her, she tried me on azithromycin then augmentin, then eventually referred me to an ENT. It would be 3 months until I could meet with him. He assured me he could cure my infection but that it would just come back until I had an expensive septoplasty/turbinectomy.
Between my doctor and him they tried me on azithromycin, then augmentin, then levofloxacin, then ciprofloxacin, and the only thing that helped was the two rounds of prednisone I was given (which everything would come back worse when they ran out). They didn't even find any bacteria in my sinuses and assumed it was just "some resistant staph infection." Now that I've met an actual ENT, I'm pretty sure the one I met a year ago is just a glorified plastic surgeon. He had more information on botox injections in his office than he did on actual medicine. It would be 2 more months before my surgery.
At one point I complained to my doctor about severe plural pain over my heart. She just sort of went "huh, it must just be a thing. Let me know if it doesn't go away." It went away a few days later but I now have a mysterious soft tissue mass where it happened.
So for 5 months I had to "live" like that. It took all the energy I had to just make it through work (and I worked a desk job that involved minimal human interaction). I couldn't care for myself or my daughter (my wife and I were separated at the time with 50/50 custody and she'd have to watch our daughter almost every day because I just couldn't stay conscious). I'd come home and immediately sleep. All I could really do for 5 months was sleep except for the two times I had prednisone. I actually went out and ran a 5k during the 2nd round of prednisone, it was such a bitter-sweet relief because I wanted to believe it would stay but I knew it would just be worse when it wore off.
Something happened with the surgery that miraculously sent me into remission because I did feel better.
Fast forward to about a month ago (September 8th, 2017). My wife and I are together again. I woke up with extreme plural back pain, but I assumed it was just back pain and bought a new pillow. The next day I woke up feeling like I had over-trained at the gym and had to call into work because I thought I was coming down with something and wanted to rest it off before it got too bad (it's kind of sad looking back and remembering that moment of hope).
Over the next week I started to feel like I was coming down with a cold. Then my joints started aching at night, I would sweat and lose my breath from doing superficial things like putting on my socks or folding laundry, I would become sweaty and feverish over trivial non-physical things (like having to solve a difficult problem at work), I was always tired and couldn't sleep throughout the night at all, constantly waking up soaking wet and hot, aching all over. It began to feel like the flu.
I tried to see my primary doctor but the office told me she dropped me over an unpaid $70 bill from a year ago. I tried finding another doctor but they told me it would be a month before I could be seen, so I had to go to urgent care. I explained everything to urgent care and she gave me some azithromycin and told me to come back if I didn't feel better within 3 days.
After a week it only got worse. All the old severe sinus pain came back and there was a bloody mess coming out of my nose 24/7. I went back to urgent care and explained everything to a different nurse's assistant exactly as it was. I was in severe 8-10 pain all day every day. I had to be very insistent that something was very wrong. She prescribed me some augmentin but I begged her to give me prednisone. She rolled her eyes and said "fine, I'll give you a SMALL dose" like I was just some asshole who was lying to her about my symptoms and was trying to hunt for drugs.
She didn't really believe me because the stuff coming out of my nose was brown/bloody, not yellow/green. She kept asking me if I had a cough and I had to explain that I don't know because my back hurts too bad to cough so when I feel like I have to I just clear my throat. That sneezing feels like being blasted with a shotgun and it's even too painful to blow my nose. Of course I appear perfectly calm while I'm explaining this to her because this is pain that I've become acclimated to, having to live with it 24/7 for the past few weeks. Like how a slowly boiled frog won't jump out of the pot.
"It feels like ice picks are being driven through my eyes and someone's punching me in the nose and teeth all day and that merely breathing agitates a knife that's stabbed in my back, I'm always either on one extreme of being so exhausted I can't stay awake and so sweaty and hot that I can't stay asleep, my knees and ankles hurt so bad I can barely walk up stairs, taking a shower makes me sweat for an hour and putting my socks on makes me run out of breath. I've missed over a week of work in the past few weeks, and everyone's really scared for me. Even the top of my head hurts. Every hair on my head feels like it's on fire. I would not be here if it was not really, really bad." was about as descriptive as I could be but I'm pretty-sure she thought I was lying to try and get some pain pills. She diagnosed me with a sinus infection and told me to call an ENT.
The prednisone was the eye of the storm. I was still treating this like a sinus infection so I did my best to try and clean it out while I had a window of opportunity (3x saline rinse every day with a sinupulse, steam hood at night, manuka honey rinse and tea tree oil diffusion to try and kill the "staph infection"). The manuka honey actually healed the scabbing and bleeding (what a miracle) but my sinuses were now so raw and enflamed that it felt like severe allergies. I thought I had healed my nose and that the over-rinsing was doing more harm than good in terms of protecting my sinuses so I stopped. Within a day the bleeding started again.
The pain was coming from my septum, not my sinuses. It was just radiating to everything in my face. Throughout all of this I'm close to overdose levels of ibuprofen and acetaminophen, which were doing almost nothing.
After the prednisone was gone the back pain came back with a vengeance. A few days later the back pain became chest pain and was spreading to my shoulder. I was sitting at my desk at work running out of breath and decided I had to go to the ER.
I went back to urgent care with the intent of getting an x-ray (to save time and money) and using that to segue into the ER. I saw the same woman as before, explained everything to her before and she basically told me there was nothing she could do. I told her I needed an x-ray and she clapped her folder shut, perked up and smiled, and said "ok, sit tight."
45 minutes later she returned pale as a ghost, explaining that they found multiple soft tissues in my lungs and that I would need to go to the ER for a CT scan. I honestly wasn't surprised, I was just disappointed. I felt so betrayed and forsaken and sad for my family having to watch me go through this. She even suggested I take an ambulance and I had to look her in the eyes and tell her that I drove myself from an hour away and have been living like this for the past month, that I would drive myself.
A week ago she told me not to use urgent care for things like this and told me to get a doctor.
I was in the ER with my parents as my wife was home with our daughter, we had to tell her that I had to work late because we didn't want to scare her. The PA in the ER didn't even look at my x-ray and tried telling me that too many doctors over-prescribe CT scans and that he wasn't going to give me one. We all just looked at each other then looked at him and told him we already have an x-ray... that's why we were here. His face went red and he left the room. I had a CT scan not too long afterwards.
He set me up with a pulmonologist in town and I finally got some actual pain medication and a real dose of prednisone. I called the next day for an appointment and was told they wouldn't see me because I wasn't referred by a primary care doctor. I can only assume my family called them screaming in tears because I was given an appointment the next day.
The day before I was told I wouldn't be able to meet with the pulmonologist for another 10 weeks.
I met with a pulmonologist who listened to me for 10 minutes and actually believed me. That's all it took. He told me he thinks I may have a disease called granulomatosis with polyangiitis and that I should go get some lunch with my family, come back for bloodwork. This doctor saved my life that day and spent every day of the next week kicking through every obstacle that the healthcare system was trying to put in my way just so I could get some attention from doctors. He set me up to meet with my new primary care doctor that day.
I was told I wouldn't be able to even meet my primary care doctor until next week and he got me in within an hour.
He referred me to a medical university. Their intake nurse turned me away saying that I "didn't have enough" to see a pulmonologist must less a rheumatologist and she set me up for an appointment a month away. My pulmonologist was furious... livid. He told me to go to the ER and told me what to say to them.
Well, the next morning I woke up with 10 pain in my eyes feeling like they were being seared out of my skull. My wife drove me to the medical university ER and we waited. After 2 CT scans a PA asked us "what we hoped to accomplish by visiting the ER today." I said "I'd like to meet with a pulmonologist today." He told us that would be impossible.
A few hours later I was admitted for inpatient. A few hours later I had met with my rheumatologist, his fellow, multiple attending doctors, students, staff, and the next morning met with two teams of pulmonologists. Shortly afterwards I was diagnosed with GPA.
The day before I was told I wouldn't be able to meet with a doctor at the hospital for another month.
A month ago I was told I had a cold.
How many people feel sick as hell for weeks and take that appointment 10 weeks from now but don't actually get seen by anybody until they wake up one morning with kidney failure? Or blurred vision, or hearing loss, or stabbing pains in their gut, or coughing up blood? Have to have kidney transplants, plasma transplants, bone marrow biopsies, chunks of their lungs cut out, their noses collapse, their vision disappear, their intestines removed?
Is this because of (a) complete absence of awareness of GPA or (b) complete absence of compassion in the healthcare system? Because doctors and nurses either (a) don't know or (b) don't care about the warning signs?
If I didn't have that one doctor to listen to me, believe me, advocate for me, and knock down every administrative roadblock I encountered I would probably be dead or close to it. If I didn't have family members to fight by my side and speak up for me I would probably be dead or close to it.
Based on my experienced (I know this isn't everybody's experience), GPA only seems so deadly because of all the hurdles and roadblocks that the healthcare system puts in its way to actually get attention, diagnosis, and treatment before it has a chance to ravage people's bodies.
Is this a common occurrence? I'm really curious if anyone else suffered because of inaction on the part of hospitals, clinics, and healthcare staff.