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    Default Celebrate how far we have come!

    Two years ago I was in sad physical shape and my health was failing fast. I had no idea what was wrong and neither did any of the dozen doctors I had seen looking for answers. I had lost weight, lack of appetite, and was in pain most of the time. My joints hurt so bad I couldn't sit down or get out of a chair without using my arms to help. I had gone to see my diabetic educator who was so concerned about my poor appearance that she got me into see a GP in her clinic right away. They did some lab work and found blood in my urine, increased anemia ( it had been gradually developing which was attributed to my stage two kidney disease from years of diabetes), but nothing that really explained my poor condition at the time. They wouldn't admit me to the hospital but wouldn't let me drive home either so my wife and and a neighbor had to come 30 miles to retrieve me. They did set up some CT scans and ultrasounds for my kidneys to check for cancer and tumors or any problem that might be causing blood in my urine.

    I had those tests and some others but things really started going down hill fast so at the end of March I was admitted to the hospital with suspected pneumonia and bladder infection and given treatment and more tests. Soon I lost my hearing in my good ear, the other was seriously impaired from years of infections and had no middle ear from three prior surgeries so I was now functionally deaf. My kidneys were failing fast and then I started coughing up blood. I was dizzy if I tried to stand and needed help to walk. My balance was also gone on right side along with my hearing.

    By now they figured out I didn't have pneumonia or bladder infection but still had no clue as to what i did have, only that I wasn't going to last long and was headed for dialysis. I was getting regular transfusions to replace the blood I was losing. They had sent off some blood samples to Mayo looking for answers and then I heard the words of Wegener's Granulomatosis for first time. I had no idea what it was but my nephrologist who told me the tests from Mayo said it was 99% probability that I had it since my ANCA scores were astronomical. He said it was a very nasty , fast moving disease that needed immediate aggressive treatment some place where they knew how to treat this nasty disease.

    Three doctors and two family members who were used to manipulating physicians had tried to get me transferred to Mayo for treatment but they refused to accept me since I had just gone on Medicare. My nephrologist then called a friend for second choice of a large University hospital that had experience in treating Wegener's and it was also an hour closer drive and they agreed to take me. I was there a few hours later and a kidney biopsy the next day confirmed the diagnosis of Wegener's disease. The Wicked Granny hit me hard and they said I had an extremely nasty version so they used very aggressive treatment--mega steroids, lots of plasma exchanges, RTX IV to start, then CTX IV, then CTX oral, and lots of antibiotics to treat the infections and to try prevent others, numerous transfusions, and a couple weeks in a drug induced coma (intubation) and umpteen trips in and out of ICU.

    At my lowest point all I can remember being able to do was blink so from there it is was either going to get better or end soon. My doctors tell me my recovery was rather miraculous as they slowly regained about 40% of my kidney function, 65% of my lung function, and i was able to transfer to the rehab hospital after several weeks without being on oxygen anymore. I had regained the ability to feed myself and was out of the wheel chair sometimes as I could walk short distances with a walker and was ready to work at at rehab. I worked hard and slowly regained enough strength to pass the test of being able to get my self off the floor from a reclining position with the use of a cane. It took several days to pass this test as I failed the first several times since my muscles were too weak. I also became strong enough to sit in a chair without using my arms or falling into it and to also stand up. Simple tasks but very difficult or impossible when the muscles are too weak.

    I failed my first try out at home and returned in a few days but learned I needed a longer period of rehab and lots more work before I could try going home again so I went to a nice nursing home with a 21st century rehab department and amazing array of equipment and spent three months learning to walk further and eventually without the walker but with a cane. When I could walk the 130 feet to the main door and back to my room I was considered well enough to try going home. It was a tough adjustment. At home i had 14 steps with a landing half way and often had to sit and rest on the bench in the foyer when going up and down the stairs. I couldn't make a 65 foot walk to fill the bird feeders without wheezing and stopping to rest. But slowly I got better and now on most days I can walk couple hundred yards at one time even without a cane.

    Recently I had surgery to remove my cataracts and just had a BAHA implant surgery that I expect will restore some of my hearing on my deaf ear. It also seems strange to me that my hearing in previously very impaired ear actually got somewhat better when my good ear went deaf. Sort of like the blind developing better hearing as one sense tries to compensate. With the help of vestibular rehab I feel able to walk without assistance and without being bothered by dizziness. I do stagger and wobble a lot but don't fall. I have osteoporosis from the pred meds and and diabetes along with serious neuropathy so falling is a definite risk. The CTX also messed up my bladder function and some meds seem to have wrecked havoc with my endocrine system so I still have those issues to try sort out.

    I have had three flares since I left the hospital, two required short hospital stays, and one several weeks of extra meds a year ago.

    So life is good. Almost a year since last flare. I am still on the white side of the snow and expect to be on the green side of the grass in a couple months.

    I found this quote by Bobbi Mundt, a paraplegic who mentors people with disabilities: "I think one of the things people forget to do is to celebrate, especially those with disabilities. We don't stop and look how far we come."

    I have not viewed my self as disabled even though I know I am unable to do the work I used to do. I have a handicap parking card hanging in my car, I have a button that says "Please face me, Hearing impaired." and I now live in an assisted living facility (the independent living part). But most disabled people don't view themselves as disabled, we just have some limitations that require adjustments. Right?

    I do identify with the need to celebrate how far i have come from the nadir of this horrible disease. I still get PTSD like symptoms and anxiety when I think about those first few weeks of treatment and marvel at the strength of those of you who have also knocked at death's door and are able to relate the details of your ordeal so clearly and poignantly. I feel overwhelmed when family members tell of their loved one struggling against Wegs and sometimes losing. I think we all feel their loss and empathize with their suffering. It is a horrible disease like a wicked stepmother tormenting innocent people.

    I don't think I am overly superstitious but I don't want to wake up my Wicked Granny either so i will post this anniversary note a month before my diagnosis and try slip it past her and her Weg dog. March has been a tough month for me the past couple of years.
    Last edited by drz; 04-07-2019 at 09:24 AM. Reason: added details and fixing typos


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