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Thread: New Texas Weggie

  1. #1
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    Default New Texas Weggie

    Hello everyone. My husband and I live in Fort Worth, Texas. My 56 year old husband, hereafter known as ‘D’, was diagnosed with Wegener’s on June 28th 2013 at the end of a 5 day hospital stay for acute renal failure. This normally very healthy man had been suffering from horrible joint pains over his entire body for 2 weeks. He was so sick he couldn’t drive or work at his desk job. This is a man who NEVER misses work. During that awful 2 week period, I took him to his PCP twice. The first time, I was so sure he would be admitted I went ahead and packed a bag for the hospital. The PCP was baffled by his symptoms: severe joint pain, tongue sores, jaw pain, red spots on the elbows, knees, chest and feet, fatigue, loss of appetite, no fever. All this was in addition to the unresolved problem of sinuses blocked with those horrific enormous bloody boogers seemingly composed of beef jerky and caramel for which she had already referred him to an ENT earlier this year. Initial blood tests showed an alarmingly high sed rate indicating inflammation. She gave him a steroid shot and sent us home with codeine pills for the pain plus a prednisone pack to start bringing down the inflammation while we sat back and waited for more test results. Additional blood tests were ordered looking for auto-immune disorders, parvovirus, West Nile Virus and other exotic illnesses. The steroids gave him a couple days of relief. After that, the pain came back with a vengeance. We just had to gut it out with the pain pills and hope like hell for a diagnosis and treatment plan. What prompted me to take him to the ER on a Sunday morning was when he reported new symptoms of nausea and bloody brown urine. Yes, I looked at it. It freaked me out so badly I said “Let’s go to the ER” and started packing the hospital bag for the second time.
    Luckily, there was almost no wait in the ER that morning. The urine specimen left no doubt that something bad was going on. The ER Dr gave D a good looking over and suggested that he might just have “a nasty bladder infection”. Many blood tests and blood cultures were ordered. I was a little confused when she ordered the chest x-ray. We hadn’t discussed anything going on in there. Within an hour, blood tests started coming back showing that he was in acute renal failure with severe dehydration. The chest x-rays showed some kind of lung infiltrates. With all this news plus the fact that he was being admitted to the TRANSPLANT floor, I began to really freak out.
    For the first couple of days, many tests were ordered but no treatment was given other than IV fluids and antibiotics. The pain continued, controlled only by codeine pills every 4 hours. His creatinine level continued to rise to a high of 5-point-something on Day 3. That morning, he started having shortness of breath. His oxygen level had gotten so low a blood transfusion was ordered. This day was also my 50th birthday. We were supposed to be on the beach in Florida celebrating but it didn’t work out that way. When I saw the fear starting to show on my stoic husband’s face that morning I began to meltdown. Worst Birthday Ever.
    Things started to turn around later on Day 3 as test results came in. The kidney biopsy revealed serious inflammation but no scarring. The nephrologist started 3 days of massive doses of IV pred. By the end of Day 3, the joint pain was completely gone. Creatinine levels started dropping too. Test results ruled out many terrible maladies but the test for Wegener’s was taking longer to come back. As each possible disease that I never heard of was mentioned by various doctors I would quickly google it on my smartphone. I remember being most terrified of Wegener’s because whatever I looked at said something about an 80 % mortality rate. On Day 4, it was down to either Wegener’s or a possible allergic reaction to some kind of OTC medication like Aleve or Prilosec. The morning of Day 5 brought news of positive results for Wegener’s. The nephrologist delivered this news without a lot of embellishment but with some degree of sadness. At that point, we were just glad D was feeling better so we went home with a stack of prescriptions and a low potassium/low phosphorous diet plan. He was put on 150 mg of Cytoxan and 60 mg of Pred plus Bactrim.
    My plan was to go straight to denial mode but this luxury was not available to me. Well-meaning family members kept calling with tearful wishes for good luck. They must have looked at the same 80% mortality site I had seen earlier. I got on the computer to try to learn a little more. More gloom and doom. Even a quick glance at this site added to my sense of darkness, disability and even death. My computer became an object of fear to me. At the first available opportunity, I fled to my own PCP to discuss the physical symptoms of panic, fear, and anxiety that were consuming me. Through the miracle of modern pharmacy, in a week or so I was feeling like I could think rationally enough to cope with whatever needed coping with. One day I popped a Xanax and forced myself to sit at the computer and google “ Wegener’s” plus any positive terms I could think of like “success” “living with” “recovery” “remission”, etc… That’s how I found out that our future is not anywhere near as dark as my imagination had led me to believe. Also through the miracle of modern pharmacy, D was showing improvement every day. By his 2 week follow up with the nephrologist, lab work was looking good and he was off the special diet. He was instructed to start tapering the Pred by 10 mg/week during August. The only lingering effect has been stiffness and swelling in his lower legs and feet. That has very gradually subsided. Yesterday he looked down at his feet and yelled “Oh my god!” Of course, my heart sank, thinking it was the return of the red spots or something. He was yelling because the swelling had come down enough that he could actually start to see veins and tendons in his feet again.
    So here we are a month later pretty much back to a normal life. We don’t want to be defined by this disease. We’re both kind of uncomfortable discussing it too directly. We call it The Condition or Your Condition. I don’t think D even remembers what it’s really called. He’s not very interested in learning about it. He just wants to be normal. For a while after he got out of the hospital he was still telling people that he had a severe allergic reaction to Aleve. I guess to his ManBrain that was more palatable than having a disease. To the ManBrain, disease equals weakness. We have developed a kind of team approach to dealing with this. I have taken on more of the junkyard dog role. It’s my job to get educated and manage the treatment plan as well as possible. His job is to keep being his adorably positive self, take his meds and report any new or returning symptoms. My biggest fear is that he will disregard changes that might indicate a flare. However, memory of that awful pain and a week in the hospital seems to have made an impression. My hope is that with constant vigilance, we can keep this beast at bay and continue down the path we were on before all the drama hit us. The whole experience has brought us even closer.
    Thank you all in advance for being on the team. I have read almost every post on this site and learned so much. However, I still have questions. You’ve been warned.
    K (FW WegWife)

  2. #2
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    Hi K,

    Glad to see that D is on the mend and that you are both learning to live with this dumb disease. Many of us have stories similar to D and you. Indeed, many of us are testimonies to modern pharmacology. Sounds like you're both in good hands doctor-wise. Just don't be afraid to ask questions of them. Many of us on this forum have experiences similar to D's and not only survived disease onset, but have thrived since.

    Welcome to our world and good luck with better health in the future.
    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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    Hi K,

    I'm from Dallas and my daughter who has Weg lives in Austin. We went through similar emotional trauma upon first diagnosis. The good news is that with aggressive, experienced treatment your husband can minimize damage and maintain control of his disease. The more real information you learn (re: from the Vasculitis Foundation, and those experts that deal exclusively w/ Weg) the better and more empowered you both will feel. Personally, I feel it is important for the patient to get on board with the learning process as soon as the initial shock/denial phase has subsided. He is fortunate to have you as an advocate, but in my case I turned into an enabler. This allowed my daughter's denial to continue longer than necessary.

    This is my personal opinion only, but you will see it mirrored from many others on this site... If at all possible, at all costs, do your best to go see a vasculitis expert in person as soon as possible. The major medical centers you'll see referenced on this site for those from the US include the Mayo Clinic, Rochester; the Cleveland Clinic, OH, John's Hopkins etc... we have our favorites mostly because of the superior care and information and MORE importantly the medication these specialist are able to deliver. Our local providers may only see a small number of these patients due to its rarity. They may use older drugs at inappropriate doses. The experts are pioneers in innovations and see this patient population exclusively. My own daughter was seen initially at Mayo, Rochester and withstanding the cost of getting there, the cost of care was actually less than trying to navigate in Dallas at UTSW.

    Best of luck!
    Jane

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    Welcome to the site K...glad you found us, despite some of the 'darker' news we inevitably end up discussing. Tough credentials that your husband earned for Weggiedom! Sounds all too familiar. I, too, have a 'man brain' and ignored many of my symptoms...almost killed me...like your husband should and has to, I changed my entire approach to my body...once I survived. Sheesh. I hope D takes this all to heart and works diligently at getting better, including a good doc/protocols/drugs/healthier habits...I'm not one to speak too loudly about good habits, since I'm not good at it, but D must establish a routine that works for him getting healthier. Be patient, tough, and caring K...life will get better with WG, just gotta pay attention to it...sighs...best of luck!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome from another spouse. You will become alarmed by reading the "side effects" of the drugs used to shut down and control the immune system, but find and trust the main Dr for controlling the meds. Blood tests, urine tests and a diary are the keys. GPA is the new term for this disease, and avoiding sick people becomes the next job.
    D

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    Hi and welcome to the forum.
    you and your husband have being through nightmare
    but survived
    you are handling the treatment of him and of yourself so well, he is lucky to have you.
    with the right treatment he can get into remission and live normal life. the words you were looking for: remission, recovery, even success are possible.
    I can tell from my experience that having WG made me change some things in my life, which makes my life much better then before, although there is no remission yet.
    you came to the right place. this forum is the best "wg doc" in the world and there are here amazing people with a lot of knowledge and generosity in sharing it.
    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.

  7. #7
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    Hi K & D...unfortunately welcome to our group.Sorry you had to join but we are not all gloom and doom here. You will learn more here than googling it,since we are actually going thru it. I know when I was first diagnosed, I too thought it was a quick death sentence,but with the right drs. and treatment you can go on to live a pretty normal life...just not the one you once knew. It sounds like your hubby is in denial of what he really has and he really needs to be on top of the game to notice any changes that might sneak up and diffenetly get blood work done at least on a monthly basis. Hope the best for both of you ( thank God for Xanax..huh !!)

    I used to live in Texas also..I loved it there. I lived on Possum Kingdom Lake (ever hear of it ) for about 7 years then moved to Euless,I worked for Pan Am at DFW for about 6 years there. My grandparents,when they were alive lived in Arlington and we used to take family vacations there every year when I was younger,still have relatives there..Love those COWBOYS !!!! Anyway keep us posted on how things are going.
    Life isn't about how you survive the storm, but how to dance in the rain !

  8. #8
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    Welcome, K. You have come to the right place to learn about Wegeners in its many variations, and to get support from people who are going through it, some with initially very severe cases and others with lighter versions. What your husband went through sounds very scary, and he must be getting some good care or he wouldn't be doing as well as he is. He is on the same drugs I was started on, and I'm happy with the way they worked. I'm now on methotrexate, a somewhat milder immunosuppressant than Cytoxan, and doing quite well, although too much stress will have a noticeable effect on how I feel. Please keep us posted as to D's progress!
    Anne, dx'ed April 2011

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    Hi K and welcome to the wonderful world of Weggies.

    My first thought, is that I wish D would tell people the he has Wegeners or GPA, so that more are aware of it but my second thought is that I totally understand him not saying it.
    Sometimes I tell people I have WG and other times I say I have rheumatoid arthritis........it depends if I can be bothered explaining or not
    I know that's bad because there are a lot of people working really hard to raise awareness for WG and I guess we aren't helping

    I hope things keep improving for D and I hope you continue to read and ask questions.

    I'm glad you found this forum and one day, maybe D can join in too.

    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

  10. #10
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    I hesitate anymore to say the actual name of the disease, either the WG version or the GPA version. People who haven't heard of them, which is of course most people, don't seem to be able to process those names. So I'm starting to just say I have an autoimmune condition, not use the word "disease" so as not to freak them out. Of course they will often then say "which one?" , as if they expect to have heard of whatever one I name. I've been saying "vasculitis", or "a form of vasculitis", or "vasculitis, and there are several different kinds" but if I say that last, I end up mentioning the name more often than not. Keeping it simple is good, and they can always go look it up on the internet.... trouble with that is, they then may end up thinking there is an 80% mortality rate! But not many will probably bother to look it up, or remember to. The better we feel, the less need we have to mention it at all!

    You could be right, Michelle, that we should mention WG or GPA to encourage awareness of it. I'm leaning toward "vasculitis" on that, since all the forms are rare and serious, and I assume, incurable at this point, and that word just rolls of the tongue and is easier to remember than either of the names for Wegs. Or we could just say Wegs, to really throw them!
    Anne, dx'ed April 2011

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