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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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    This is an amazing story, drz. My response necessarily involves a lot of boring personal narrative, so I will put it in a PM.

    Al

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    'Like a wicked stepmother tormenting innocent people' I like this analogy of this cruel disease.

    Thanks for your story Drz.. You and your family have been through so much.

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    That is fantastic drz.

    I am so glad that you have managing to bypass the Granny and are here to share your story with us.

    I say my Congratulations in a whisper so as not to ever put you in that position again.

    Take care
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Default After thoughts from writing the above post.

    It was very difficult for me to think about the whole initial treatment experience as it brings up many strong and unpleasant feelings. I think writing it was therapeutic, sort of like journaling in public venue where you can get feedback and confirmation. I think my nightmares about having to go through such an unpleasant time are finally starting to decrease but I still get very anxious when i think about being that dependent again probably because I have always been extremely independent and unwilling to accept, or ever ask for help. Nothing like a severe illness or accident to cure that problem and it helped me become a very good patient and to learn patience and to accept help when needed. I still have lots of trouble asking for help though.

    I still have mild panic episodes when I think I am having a flare or even when I went back to the same hospital for my BAHA (bone anchored hearing aid) surgery it brought back some very strong unpleasant feelings.

    I think one of the most frightening and unpleasant times was the limited memories of the whole intubation experience. Every day they had to lighten the drug dosage till I became partly conscious enough to try breath on my own and they would shut off the breathing machine, and I remember fighting hard for air. My hands were restrained to keep me from pulling out the tubes in my lungs. Not a happy time. Choking and drowning in your own blood might not be "Waterboarding torture" but it must rank pretty close. I really empathize with anyone having breathing problems and rank being able to breath as having the highest importance. You never know how important till you experience a real struggle to do so. Just like everything else that you can't really appreciate it till you lose it.

    I know we have discussed near death experiences previously in another thread along with what we learned or gained from Wegs. When i believed or knew I was at the end of my endurance to keep fighting for air, and knew I was going to die soon from exhaustion, my main regret was letting my family down that had been keeping vigil and working so hard to make sure i was getting the best care. The doctors still remember my daughter who spent many night standing guard over me and asking all the numerous doctors the tough questions and making sure they all got on the same page which took numerous lengthy meetings before they could reach a consensus about my treatment. She may have been the reason my treating doctors consulted with the best experts around the country to decide how to treat me. I knew my family was working hard to keep me alive and I felt really bad about disappointing them and letting them down because i just couldn't fight for air any more. i also felt sad about leaving them and a little guilt that i hadn't finished cleaning up the clutter in the garage, but no great fear or lights at the end of the tunnel for me. I regretted the pain and stress my dying would cause them but felt unable to do anymore and knew i would be too exhausted to keep breathing much longer.

    Thus i accepted the offer of intubation but had no idea of what that entailed. I remember there seemed to be a sense of urgency to get it done real quick "before it was too late" so the machines took over and I lapsed into unconsciousness and some peaceful rest. When i look at pix of me lying there with numerous tubes hooked up to lots of high tech machines to monitor and take over for all my life functions I really understood how lucky i was to survive and to recover as much as i have. The only sign of life when you are intubated is generally the noise and movement of the machines.

    No one dies during intubation, just like no dies in an operating room. Machines keep the body alive while they move you somewhere else where death is allowed. Getting off the machines was a real nightmare and very slow and difficult process. It doesn't always work so you have to be re-intubated again and then they try again later to remove the machines. I did this too. It is a very slow process and I started by opening my eyes and communicating with blinks. Then I got to suck on ice chips and learn to swallow. Then came speech, and after several days I got to eat some real food. Then lots of physical therapy to try restore muscle strength so I could move myself and turn over in bed and eventually breathing without oxygen and then without any machine assistance. Sitting up, standing and walking took much longer.

    I can understand why my wife who observed my ordeal said she would never go through what I went through. Two weeks after regaining consciousness I told my daughter, who is my health care director, that I never wanted to go through that again . A month later I said well, if I have to, i guess i could do it again but lets try real hard to avoid it if possible. Then i began planning a big Celebration of Life party to thank all the people who sent well wishes, cards, postings on my Caring Bridge site my wife started to update people on my care and progress. I think this might have been at the time when i was also in the tail end of my pred induced manic period and still rather grandiose. I never had the energy and neither did my family to have a real big bash. It is hard to do a party when your immune system is so wiped out that you have to avoid contact with people. My wife then was also in the middle of hitting her lowest WBC and low blood platelets from her own radioactive isotope Rituxan treatment for lymphoma and had no functioning immune system either. Maybe if she is one of the lucky ones that gets a remission we can both a have a big Celebration of Life Party after I can hear better and it is safe for us to do so.

    I try to be vigilant in keeping my appointments, taking my meds, tests, and doctors informed about what I think is happening in my body. I want to stay as healthy as i can as long as possible to allow my family to focus on other things than my latest health crisis and to be able to enjoy watching my grand children grow up too. Like Bobbi Mundt said, I need to Celebrate over how far i have come, I know some others here have done the same journey already and many others who are new here will be celebrating their own recovery journey too in the next year or two. Best wishes for a good journey through your new life. It will not be the same but you may appreciate it and enjoy it more.
    Last edited by drz; 04-07-2019 at 09:31 AM. Reason: typos

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    Thank you Drz for telling us your story and especially for reminding us that we should celebrate even the small improvemnets in our health. I was really chuffed when I was able to get from my car to the chemo unit in one go rather than the usual two stops for a breather. My next goal is to be able to get to church without the need to rest..

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Wow! Thank you for sharing, I can type now as I have dried my tears.
    Dale

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    So glad I found your first post.. So similar to mine.. I will write my story but haven't been able to yet.. I think the Intubation creates so many problems and have read it can cause post traumatic stress syndrome. But yes I would not be here if it had not been done.. Thank you for your story and you are doing so well it gives me so much hope. Susan

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    i needed to read this thread again to remind myself how lucky I am even though I feel like crap from being sick most of the past two weeks. But when I read the posts from those who are gone, now add Phil to the list, whining seems pretty petty and out of place. But I needed to remind myself how lucky I am to feel this sick since I am still alive.

    It is now about five years since the Weg dog bit me hard and I was lucky to escape its clenches. I have still been considered in a drug induced remission most of the past few years with the same maintenance meds of 5 mg pred and 175 of Azathioprine plus the usual addition of various meds to control the side effects of the meds and damage from the Weg attack and years of diabetes.

    Every Fall I seem to have an increase in the residual symptoms of GPA (my concession to the new term here) and the mucous production increases along with more blood showing up in the nasal rinses, joints and muscles hurt more and fatigue increases. I usually get a sore throat from the excess mucous and have a large increase in coughing along with developing either sinus infection, bronchitis, or pneumonia. Two years ago I had all three which lasted from before Thanksgiving to after Valentine. I ended up in ER Christmas Day that year. Last year I tried to get a jump on it and got an antibiotic before Thanksgiving Day to treat my sinus infection and bronchitis to try avoid the holiday rush and it seemed to help as I only felt sick for a couple weeks. This year I had some delusions of grandeur and thought by using more sinus rinses, steroid nasal spray, humidity and hand sanitizer that I might be able to get by without any antibiotic. Two days before Xmas I realized I was wrong and went to get one.

    I was feeling pretty good in a few days and not coughing up any more gray green mucus plugs and felt pretty good on NY Day and thought I had lucked out again. Then the bottom fell out with a night of extremely violent coughing that kept me up all night. I was still on the antibiotic so knew it probably wasn't a bacterial bronchitis but a virus one for which there is no treatment except for the side effects. The next day I had a long all day medical trip and was so exhausted by the time I go home and feeling so sore all over, that I was worried I was having a major GPA flare for first time in years. i hadn't felt that sick since I was diagnosed with GPA. So I went back to the Walk In Clinic to see if I could get some help to sleep that night and rest up in case I needed to go to a major hospital again for some intensive GPA treatment next week if necessary.

    I knew they didn't have much ability to test for a GPA flare in their limited lab but was willing to take whatever help I could get. They did confirm my WBC was still elevated. I was told after her exam, I think you have the Flu. Well 22 or 26 residents in the nursing home next door have the flu and staff go back and forth to our living area and the living units where there are active cases of stomach flu. So this was a real possibility but in my ignorance I said I don't have any diarrhea or vomiting so how can I have the Flu. She said you have Type A flu and the flu shot for Type A this year was pretty worthless and not very effective but the shot might have given you a milder case since you have no fever.

    I got my Tamiflu meds to help ease the flu symptoms and my codeine cough syrup to help me get some sleep and they both helped a great deal. I am still sore every time I cough, very tired and sleep all but a few hours each day. I think I got dehydrated from feeling nauseous from the Tamiflu (unfortunate side effect for Flu, right?) and wasn't drinking enough. So I fainted twice and injured myself at 3 am when I got up to fill my insulin pump. I bruised my hip on the chair I broke when I fell on it (another lucky break since it was the chair that broke and not my hip) and I scraped about three inches of skin off my forearm. I probably hit my BAHA insert too as it was bleeding the next day but my loaner hearing aid seems to work OK on it.


    When i woke up on the floor that night I remember thinking how lucky I was to be living in my light assisted place where I could summon help with my call button. Only problem, I hadn't used it for over three years and it was on my dresser which i couldn't reach. After sleeping on the floor a bit I did manage to make it back into bed OK.

    The next two days staff and a neighbor came to check on me to see if i was OK and offering to get my food or anything i needed. I am feeling somewhat better after taking 80% of my Tamiflu meds and expect to feel much better soon. I know I am really lucky to have the flu and not a major GPA flare that requires Hospital treatment. I didn't know that one can take Tamiflu at half dosage for ten days to avoid getting the flu in the first place but will certainly consider that next year when we have another flu outbreak here.

    i hope to rejoin my usual activities in a few days and celebrate my life again with more gusto.

    I hope your New Year started out well for you and that you can also celebrate your life today, what ever it is, with gusto.
    Last edited by drz; 01-07-2015 at 08:26 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by Al View Post
    This is an amazing story, drz. My response necessarily involves a lot of boring personal narrative, so I will put it in a PM.

    Al
    I found your story to be an interesting read and well worth posting here. There are a lot of similarities in how our Wegs developed but also some differences. I had nasal symptoms and nose bleeds a couple years before developing joint pain and eye symptoms which preceded diagnosis by several months. We both benefited from the plasma exchanges. When things went downhill, it went rather fast. Both of us have reduced kidney function and seemed headed for dialysis for sure but somehow we lucked out, maybe due to the plasma exchanges and high steroids.

    I think your story and hopefully mine will some time give hope to a family when a loved one is under a severe attack from the Wicked Granny and they feel survival is uncertain.
    Last edited by drz; 03-10-2014 at 03:53 AM.

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