First, thank you to the two people who responded to ‘My Nose’. Fortunately, the hole is in the lower part of my nose and will not require surgery. My Harvard educated ENT was the original one to test me and diagnose my Wegeners.
My Story:
I spent my childhood and teen years with colds and pneumonia. First pneumonia was hospitalized at 6 months. In my twenties I was in a terrible car accident and demolished my face. This is not an exaggeration. I have over a thousand stitches in it, plates and wires holding me together. Plastic surgery has come a long way over the years, and I have had my share. Most people tell me they can’t even see a scar. But it is what you don’t see that has created the problems. Because of the broken nose and plate on the right side of my face, most doctors attributed my sinus infections in that direction. And, yes you guessed it, they did more sinus surgeries. Because of my husband’s corporate transfers we have lived from California to Florida. I sought out good ENT’s and allergist. Until last year they never said the word ‘autoimmune disease.’
At the end of November 2016 I was unable to breathe. My GP had recently left the practice and gone to work for a private company. In desperation I went to the local drugstore med clinic. The nurse gave me some antibiotics and insisted I follow up with an ENT. As luck would have it, I was established with a very fine one where I had a hearing test. I say I was lucky because if I was not already a patient I would have waited a very long time for an appointment. I went in thinking I was going to need another surgery. He is a very fine surgeon, and he is also a very fine diagnostician. It didn’t take him long to tell me he suspected I had an autoimmune disorder. So he ran the tests, very thoroughly. And then he called me to tell me what I had. He had me come in and he set me up with a rheumatologist. Again, I was lucky with the time, because of his referral I got in quickly. By February I was on Methotrexate, Prednisone and folic acid. I was feeling pretty good, even though C-Anca remained the same 1.80. But by the summer the Methotrexate and folic were playing havoc with my stomach. I had to see a gastroenterologist to make sure there was no other cause. At the same time I was having dental issues. After a visit with the gastroenterologist’s PA ( not a pleasant person) we stopped for lunch. That was the moment my crowns and other dental problems hit. I was eating mashed potatoes and meatloaf. We drove to the oral surgeons and the dentist. Again I was established with both. Work was started. It was my first real pity party. The colonoscopy took place, and I had the all clear. It was my summer for tests, bone density, mammography, you name it, I had it. By fall I started Rituxan infusions. My rheumatologist is with a large practice and not only does he know what he is doing but so does their large infusion center. Ten RN’s to Twenty patients. First, they started the Benedryl drip, followed by 100 mugs of Prednisone and the Rituxan. These were one day a week, all day, four times. By the end of the fourth I felt like I could conquer the world. C-Anca had dropped to 1.40. Feeling fully invigorated, I never gave relapse a second thought. I was down to 2.5 Prednisone, sleeping and planning and doing great things for the holidays. Vacation, presents, wrapping, delivering and then there was the dinner party I gave. By mid December my old enemy, Wegs returned with a vengeance. I am currently on my third antibiotic and 12.5 Prednisone. After the antibiotics have cleared I will be starting another month of Rituxan infusions. If that doesn’t work his next plan is to give me infusions with a stronger cancer drug. The doctors want to stop it before it takes a trip south.
I never came to this website until after the relapse. You are all wonderful. Some stories frighten me, others give me hope. One of you called this a merry-go-round. Truer words were never spoken. Excuse me, I would like to get off this ride and just walk around the park. Oh, and one more thing the Prednisone gave rise to my sugar, so now I have to get on a diabetic pill.
Now to add some levity. Doc told me to stop coloring my hair. After some research, it is true hair coloring does lead to cancer over a period of time. So 50 years qualifies as too much. Now I learn my hair is all pure white. How am I to let it grow out—a wig. Only the wig took a flying dive while I was in the dentist chair and they all jumped a mile thinking a live animal was coming at them.
Next thing to note. I always knew I was married to the finest guy on the planet, and let me tell you has he stepped up to the plate. Being retired he has taken me to every doctors appointment and waited with me for all the infusions. He even brings me Panera while I am being infused. The one thing this man was not fond of doing was grocery shopping. I did my thing. But now with this dreaded flu and my everlasting infection, he has taken over that duty. He wears a mask and gloves, to avoid catching something himself. I not only write a list, but I take pictures of each item. Now mind you, this is a brilliant man, but the grocery store is not his thing. Oh, I usually go to four different stores, and he has continued my pattern. Before the flu epidemic we were eating out a lot. But like one of you said ‘when the waitress sniffled you were out of there.’
All of the things I could continue writing you have all been there and done that. I pray for all of you. Thanks to all of you for sharing, and a special thanks to this wonderful website.
Before I forget, my doctor said I have had this for years, so how many others are out there undiagnosed? Some day the world may realize it is not that rare after all, just rarely diagnosed.
Masha