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Thread: Thank you & My Story

  1. #1
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    Default Thank you & My Story

    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

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  3. #2
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    Default Re: Thank you & My Story

    Welcome to the forum, Masha, and thank you for sharing your story. It was fascinating to read. Your writing is awesome. How I laugh when your wig scared the dentist

    How long it took between the first rtx and the relapse ? Were you on any maintenance meds meantime ? What organs are affected by wg ? Do they offer your cytoxan if rtx will not help ?

    I think that in my case, my wg was smoldering many years, maybe even since I was a child. I remember ears infections with bleedings on age 10 and "atypical arthritis" with wounds on my skin at age 17. Then many years of "alergies" which included rashes, coughing, and nose productions.

    Thank you for your prayers. Sending prayers to you as well. God bless you & yours.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  5. #3
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    Default Re: Thank you & My Story

    Hi Alysia, My remission was very brief, (didn’t really qualify as remission) from the 1st of November to mid December. I really overdid everything, and am sure that I exposed myself to people who had colds, etc. My Wegeners is classified as limited to my sinuses—-years upon years of sinus infections. My two great doctors are on top of everything. My ENT has me on super duper antibiotics, took a throat biopsy (called today to say I am in the clear) checked trachea and that is clear too. My rheumatologist is waiting until I am off antibiotics for a week, then Rituxan infusions weekly four more times. He’ll see how that goes, and if it is still active he plans to do cytoxan infusions. His feeling is that if I have not fully reached remission with Rituxan, then continuing that medication could have it’s own risks, as we know Cytoxan has risks. After reading some posts on this site from people seeking medical help and tests, I fully appreciate my physicians. Mine are intent on stopping this now. However, they told me that there are patients that need Pulmonologists or Nephrologists. So I know I am not in the hands of one who consider himself one stop shopping. I have not met a GP who knows Jack about Wegeners. Specialists are the only way to go.

    Dealing with Shame: For so many years I had these treacherous sinus infections with burning pains in my legs. It got to the point I didn’t even want to tell people I was sick. They thought I was weak! I was asked all the time why I got so sick so often. I would ask my husband to decline invitations without saying I was sick. I would hide, my face blew up and resembled an advertisement for how to grow the biggest tomato. And the leg burning had me seek the help of Orthopedic doctors, Physical Therapists and Chiropractors. So now at age 68, I am vindicated. I have an understanding and acceptance of this disease.

    Dealing with Acceptance:
    Laughter is the best medicine. Believe me, I have looked death in the face, and have lost so many loved ones, so I know this is not always possible. We try to avoid the news channels. We watch movies that transport us to another place, either a thriller or a ridiculous comedy. I even watch I Love Lucy reruns. We have two very small non shedding dogs, who earn their keep with their entertaining antics and giving great comfort. I laugh at myself. We may see an older actress, I’ll google her and say “She is my age and she looks so old.” Now if that isn’t the pot calling the kettle black. I could easily be mistaken for Mrs. Santa Claus, with my white hair and Prednisone rounded cheeks. But my wonderful husband tells me I am beautiful, and that is a lie I graciously accept and appreciate.

    Dealing with the Worst:
    As I said I am 68 and my husband is seven years my senior. We accept the inevitable. We have tried to live a healthy lifestyle, but along comes luck and so it is. And yes, it could be worse, I would take having this disease any day over being the parent of a child that has it. I will take this disease any day over Dimentia. I will take this disease over those who beg for food or live on the street with their children and see no way out. I will take this disease any day over those who suffered oppression and treacherous wars, and if they lived, the scars lived with them. We just don’t know. My own mother, a healthy retired kindergarten teacher was a walker. She was crossing a street when a woman crashed a red light and killed her. She taught me to savor each day. I know first hand it is not easy to laugh when you are in pain. I had a surgery and came out of the anesthesia too soon. When I shared that story with others, they asked how it felt. I told them I was in such extraordinary pain I thought I died and went to the wrong place. They thought I was joking, but the fact is I wasn’t!

    Dealing with Wegeners and Retirement: Well, we had some grand plans, and they are not to be. I don’t want to be far from my doctors if a relapse hits. Yes, it is that and the fact that they have banned me from planes, trains and even movie theatres. I belonged to a large book club full of old ladies who walked around sniffling, sneezing and coughing. They think they are brave because they are strong enough to keep going while sick. Rather than tell them what I think they are, I just dropped out of the book club. We live in the beautiful Carolinas, and when I get in remission we will take day trips. If I don’t go into remission I will sit on my back porch and sip ice tea.

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  7. #4
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    Default Re: Thank you & My Story

    Don’t give up on your dreams!! I’m just a few years older than you. Once I got into a stable remission, my wife and I started thinking again about what we wanted to do. Good talks with my rheumy and PCP gave us good guidance about overseas travel. We took a 23-day trip to Europe in 2016. We bought trip interruption insurance in case I got sick. I didn’t need it, but my wife got a UTI in Munich. The insurance paid for all of the extra expenses we incurred until we caught up with our tour group.

    Hope you can get back to good, stable health soon.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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