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Thread: Dagnosed in two weeks

  1. #1
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    Default Dagnosed in two weeks

    I'll put Montreal on the map, when I figure out how.

    I'm pretty sure they knew I had the disease within two weeks. How would they know to look? Maybe that's off, it's hazy, but my sister seemed to think by Easter too.

    But I went in by ambulance, after 5 days out of it. There's a hazy period, but April 3rd 2019, and I'm pretty sure they knew by Easter. I wasn't conscious for a few days, and it took a while for things to come into focus once in the hospital.

    A kidney failure, apparently they did a biopsy. I was on dialysis for ten weeks, I have no recollection of having the tubes installed. I thought one dialysis session was in someone's kitchen, and she was doing laundry. They said I had pneumonia, I never noticed, and worry about an ulcer (the camera down my throat I think five times). I thought the dialysis would go on forever, five or six hours, three times a week. One time they connected me, and I thought abiut that, and panicked the whole session. But later I could sleep, great considering I didn't sleep well at night.

    And no, I didn't know about the disease before, or really the concept of autoimmune.

    Four or five chemotherapy sessions, but two of those after they took me off dialysis. Prednisone for a year and a half, but tapering off over a year. Imuran I assume for six months (not sure when that started), but when I finally got home in September, I started reacting. So a switch to rituximab, three times so far.

    So they had it in control pretty fast, but it took forever for me to be able to stand up. After the diagnosis I decided to go to the bathroom, I could stand up, but immediately fell over, too weak, or it felt odd. I promised a nurse I wouldn't try again, which maybe affected things later. So I didn't leave the hospital.until late June, and it took a month of rehab before I could stand up by myself. I left rehab mid-September.

    I barely ate for 9 months, despite the prednisone. I lost a lot of weight. First the low sodium/low potassium diet, then institutional food, but also a vegetarian for forty years. I'm thinking the imuran didn't bother me until the last week of rehab because I did start eating real food. The lack of food probably slowed getting better.

    At the time, I forgot that before I landed in the hospital, I was having problems. Initially I was feeling cold, and really tired, but Montreal in February is good reason to stay inside. The dog noticed first. But then my.muscles were getting sore, it felt like the muscles, not joints. One day a shoulder, the next a knee, it just moved around. When I couldn't braid my hair, I stopped going anywhere. So I think I stayed in all of March, except for the dog, and that tapered off. Towards the end, I couldn't stand up.

    Harold Ramis's associated but unspecified disease meant he couldn't walk, reading that made me remember that that had been a problem before I got to the hospital.

    Knowing I have this disease, I do wonder about some things going back about ten years. Little things that went away mostly. I've had bad hearing since I was 21, so the blockage in one ear from about 2012 seemed part of that. I had some sores that didn't go away, I thought from scratching, but that cleared up in the hospital. I went about 49 years without any medical attention, except for stitches and a fractured elbow at about fourteen.

    And yes, I lost my waist long hair, nobody warned me about that. I thought it was stress, or not eating. When I first noticed, it seemed like someone had chopoed it somewhat, and it just kept breaking or coming out. Early last year there was a story about a teenager losing her hair, and it turned out she had the Disease, but the article blamed chemotherapy.

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  3. #2
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    Default Re: Dagnosed in two weeks

    Hey there! Welcome! You've had quite the trip in many ways Some of what you said about thinking you were somewhere else resonated with me. I was knocked out cold in ICU and had some very lucid, frightening and weird visions. It was 18 years ago and I remember them to this day. How's the Rituximab treating you? Hope it's a smoother treatment than the Imuran. I hear some good reports about it. I lost most of my hair when I was under chemo. I went to the barber after I was let out of hospital because my hair was quite long even though it was thinning and I was almost bald by the time he finished. Should have taken a photo

    Hope things are going ok for you now. Thanks for sharing your story!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  5. #3
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    Default Re: Dagnosed in two weeks

    This is a wild story, but it leaves out one very, very critical component. How are you doing RIGHT NOW? How are your kidneys (current eGFR or Creatinine)? What is your quality of life? Can you walk? Can you work?

    Let us know how you are doing. You've been through hell: hoping you are doing well.

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