LilyPony
03-17-2010, 04:00 AM
I have never felt so cared for in my entire life. The medical response has been downright amazing. If you're following my story, I had previously been dignosed with severe reflux as the cause of my problems, and then last week the vasculitis rheum (a newer younger doc) felt confident it was not wegs causing my drainage, difficulty breathing, and coughing. I was sent home with singulair and higher dose of pred with a plan to return immediately if symptoms worsened or didn't respond. Well, I think it might have gotten worse, and it certainly didn't get better.
I do have reflux. It is the most severe reflux this particular dr has ever encountered in his practice. I have barrett's esophagus and the sphincters at top and bottom of my esophagus are basically non-functional. pH testing of what was going on in my sinuses and throat showed that my sinuses have been bathing in stomach acid. My windpipe is similarly acid burned which caused asthma-like symptoms. Biopsy results are still pending and there is a possibility on the table that the wegs is in my esophagus, but very unlikely. It is definitely pre-cancerous and they believe it has been caught early enough that I don't have cancer, though we have to wait on those biopsies to come back. My body responded to the non-stop acid bath by producing massive amounts of mucous, which caused the coughing.
The rheum (the older more experienced vasculitis/wegs dr) is 99% confident that the wegs is confined to my lacrimal gland and tear duct for the time being. A CT of my head showed very similar abnormality to that area as it did 7 years ago. My ANCA is negative and the other bloodwork that came back iffy was just indicative of inflammation, not wegs. My kidneys are fabulous and so are my lungs themselves. I have learned my lesson BIG TIME with this scary experience and I PROMISE all of you that I will maintain my relationship with the rheums who have helped me. I am scheduled to go twice a year fora few years so they can really monitor what my body wants to do, and possibly reduce to yearly when they get to know me. And of course, if these biopsies show any wegs involvement I will be getting the appropriate course of treatment.
I am overjoyed to tell you that my prayers have been answered and I finally have a medication that I seem to be responding to. I had been on massive doses of prilosec and zantac along with a bland "nursing home" diet without an iota of relief. Yesterday, I started a different type of drug similar to prilosec (can't remember the name). I slept, in my bed while my husband was home for the first time in many months. I slept a beautiful uninterrupted 5 hours until I woke up in pain from my fractured rib. I took 2 ibuprofens and a cracker, then with heating pad I was able to sleep until the beautiful hour of 7 AM when my wonderful babies woke me up for breakfast. The tears are pouring as I write this. I am so relieved and feel so incredibly rested. I am on the road to recovery. Surgery to help deal with my defunct sphincters is likely in the near future, but I will tackle that obstacle later.
I do have reflux. It is the most severe reflux this particular dr has ever encountered in his practice. I have barrett's esophagus and the sphincters at top and bottom of my esophagus are basically non-functional. pH testing of what was going on in my sinuses and throat showed that my sinuses have been bathing in stomach acid. My windpipe is similarly acid burned which caused asthma-like symptoms. Biopsy results are still pending and there is a possibility on the table that the wegs is in my esophagus, but very unlikely. It is definitely pre-cancerous and they believe it has been caught early enough that I don't have cancer, though we have to wait on those biopsies to come back. My body responded to the non-stop acid bath by producing massive amounts of mucous, which caused the coughing.
The rheum (the older more experienced vasculitis/wegs dr) is 99% confident that the wegs is confined to my lacrimal gland and tear duct for the time being. A CT of my head showed very similar abnormality to that area as it did 7 years ago. My ANCA is negative and the other bloodwork that came back iffy was just indicative of inflammation, not wegs. My kidneys are fabulous and so are my lungs themselves. I have learned my lesson BIG TIME with this scary experience and I PROMISE all of you that I will maintain my relationship with the rheums who have helped me. I am scheduled to go twice a year fora few years so they can really monitor what my body wants to do, and possibly reduce to yearly when they get to know me. And of course, if these biopsies show any wegs involvement I will be getting the appropriate course of treatment.
I am overjoyed to tell you that my prayers have been answered and I finally have a medication that I seem to be responding to. I had been on massive doses of prilosec and zantac along with a bland "nursing home" diet without an iota of relief. Yesterday, I started a different type of drug similar to prilosec (can't remember the name). I slept, in my bed while my husband was home for the first time in many months. I slept a beautiful uninterrupted 5 hours until I woke up in pain from my fractured rib. I took 2 ibuprofens and a cracker, then with heating pad I was able to sleep until the beautiful hour of 7 AM when my wonderful babies woke me up for breakfast. The tears are pouring as I write this. I am so relieved and feel so incredibly rested. I am on the road to recovery. Surgery to help deal with my defunct sphincters is likely in the near future, but I will tackle that obstacle later.