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  1. #1
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    Default Reccommendations?

    OK... until recently I have been really happy with the care I've gotten from my Rhumey and Pulmy. NOT so happy with Rhumey lately. As many of you know I have to discontinue Cytoxan in early December because it attacked my bladder.

    Rhumey trying to get me approved for Rituxin (long story, most of you know it... not happening right now). So... we've doubled the Pred (back to 15mg since discontinuing Cytoxan).

    I feel pretty much like I've been hung out to dry at this point. Rhumey doesn't seem concerned about keeping up with bloodwork and until December problems we were doing blood every 2 weeks. I was feeling pretty good before the problems cropped up, but now feel the back-slide. Getting the fatigue again, joint pain, headache, low back pain, cough (treated with antibiotics by GP for resp and sinus infection about 10 days ago). While there I TOLD GP we were going to do CBC and forward to Rhumey. At this point I don't know if Rhumey just doesn't know what to do, or is just ignoring me and my disease. I've been fighting this for almost a year and felt we were closing in on 'remission'. I don't want to end up extremely ill again and having to start over. I've lost half my hair, my career, most of my froiends... was it all for nothing? Feels like it at this point.

    I'm pissed, frustrated, depressed... I talked to hubby last night and we decided it's time to look for a specialist. I got on the VF website this morning and found Dr. Stephen Capizzi in Nashville. It's only about 175 miles from me... I can't really afford to travel right now, nor do I feel up to it, especially since depending on the appt time it may end up being an overnight trip. But at this point I feel like I have to do this. *this revelation should please Sangye *

    I feel safe telling you folks here that part of me is ready to just throw away all the meds, stick my head in the sand and ignore everything... letting whatever happens happen. I know this isn't rational, I'm just so frustrated, and the doubling of the Pred isn't helping. I'm all emotional again. I spent most of yesterday and so far all of this morning in tears.

    Anyway... the point of all this rambling... has anyone seen Dr Capizzi, or heard anything about him? I'd like some info from a patient before I call and try to get in to see him.

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    Oh MissKay, I'm so sorry. I've been there with a rheumy who ignored me and let my care dissolve away. And I've definitely been to the "I give up, let nature take its course" place. Both are so difficult. Isn't it incredible though, that even in such depth of sadness that your inner spirit says "I want to live" and you seek out a VF doc's help? Good for you. Hang on to that little voice that says you deserve better and that it isn't hopeless. Keep reminding yourself that the pred is contributing greatly to your depression and tell it to shut up and sit down.

    Your efforts haven't been wasted. All that treatment has kept you alive! You don't necessarily have to start over, but you do have to get to a new doc asap. Your symptoms are very concerning. As far as finances, can your remaining friends help with a fundraiser? Even something quick and easy like a bake sale can pay for gas and hotel.

    Hugs to you, my friend. I would go through another flare to spare you this suffering.

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    Misskay, I am thrilled you are going for a second opinion and you deserve the best! I have not heard of Dr Capizzi. Are you closer to Mayo,MInnesota or Cleveland Clinic....I would go to the top vasculitis centers if you can. Maybe someone on this forum know the doctor your talking about. Thanks for being open and sharing your story, big hug to you.

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    Thanks guys...
    Sangye... I wouldn't feel comfortable asking friends for help. I'm not wired that way... I have a hard time even asking hubby to do anything for me. Right after diagnosis I lay in bed all day dying of thirst. I was too weak to get up and refill my water glass, and didn't want to bother hubs with it. I'm working on this... and hopefully I'll get better.
    Elephant... I am in East TN, and Dr. Capizzi is in Nashville. Mayo and Cleveland are a LOT further than I can manage at this point. Physically and financially. But Dr. Capizzi is listed on the VF website, so I'm going on the assumption he knows what's what... he's about 175 miles away. The nearest other docs are in North Carolina, about twice that distance.
    Hopefully someone will come along who has seen him or heard of him. Thanks again.

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    MissKay, no one is wired to ask for help easily. It's difficult for everyone. No one wants to feel dependent. I could never ask for help but when I got sick and was completely unable to do anything myself, it became clear that my old habit had to break. It's pride-based and there is no good use for it. It alienates others as no one can get through that kind of wall. It also keeps others in a state of constant worry about you, since they know you won't ask for help even if you need it. Finally someone bopped me on the head with all that and also told me, "You love to help others and it makes you feel good, so why would you deny that to others?" Even now it's a constant effort to break this habit but I'm determined. Please consider this. Is it worth your health and possibly your life to avoid asking for help?

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    Hey Misskay,

    What a bummer. I'm so sorry to hear what you're going through, as if dealing with this crappy disease on it's own isn't enough. Sometimes I just want to pummel some of these docs. There are some great ones but man are there some shitty ones out there. I just did a search on Dr. Capizzi, and there isn't much out there, but there is one survey filled out about him (no comments though) - you can see it here. Stephen A. Capizzi, MD He's also listed as an internal med doc - and for some reason in my mind that's better. My ENT told me on my last visit (I think it was his way of appologizing to me about missing the boat at the start) that the internal med docs are the 'thinkers' of the medical profession. By the looks of it he also went to Mayo Graduate School, so looking good. Also started college in 1988, so he's probably in his early 40's (a good age for a doc you want to be with you for a long time). Hope this helps a little. Feel better.

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    Quote Originally Posted by misskay View Post
    Thanks guys...
    Sangye... I wouldn't feel comfortable asking friends for help. I'm not wired that way... I have a hard time even asking hubby to do anything for me. Right after diagnosis I lay in bed all day dying of thirst. I was too weak to get up and refill my water glass, and didn't want to bother hubs with it. I'm working on this... and hopefully I'll get better.
    Elephant... I am in East TN, and Dr. Capizzi is in Nashville. Mayo and Cleveland are a LOT further than I can manage at this point. Physically and financially. But Dr. Capizzi is listed on the VF website, so I'm going on the assumption he knows what's what... he's about 175 miles away. The nearest other docs are in North Carolina, about twice that distance.
    Hopefully someone will come along who has seen him or heard of him. Thanks again.
    My guess is that your husband would be really upset with you to hear this. Let us assume he cares about you, worries about your health, and wonders what he can do to help you feel better and then you won't even ask him for a glass of water. I think that would really hurt him. So think about his feelings if you care about him and ask him for help and share ideas on what he can do to help you deal with Wegener's disease. I think many of us have had the feeling about giving up but it is hard to quit when many people that care about you are cheering you on. The disease is certainly not a fun trip, but I think it is often harder on the family than us. I understand your reason for selecting the closest doctor and think it is very valid. He may turn out (hopefully) to be very good and the the close distance should certainly make him a lot more accessible. Go for it and good luck in getting treatment to help you feel better.

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    Please hang in there and get the help you need. It took a lot for me to finally plug into the Mayo. I didn't think I had the physical endurance to come down here, but with the help of my wife I did. Then to have a one hour consult turn into five straight days of testing was tough to take, but now I am getting the help and answers I need. Now that the bleeds in my colon have been cauterized I no longer have terrible abdominal pain and cramping. That alone was worth the trip.

    Please don't give up. We are all there with you in spirit.

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