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Thread: pberggren memorial thread

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    Quote Originally Posted by Alysia View Post
    thank you so much, all of you, for being here for me. It means a lot to me. I love you.
    writing on this thread helps me, although it is with lots of tears. but I cry also without it, so.....
    I just am sorry for not reading other threads and relating to people who might need. this is what I appologize about.
    I totally understand what you are saying about not being able to contribute and help others on other threads when our life drops out from under us like your loss.
    When my mom seems hopeless, I can't possibly read other threads and try to contribute.
    All I can think about is losing her because I couldn't find her the right dr soon enuf.

  2. #422
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    Quote Originally Posted by Alysia View Post
    thank you so much, all of you, for being here for me. It means a lot to me. I love you.
    writing on this thread helps me, although it is with lots of tears. but I cry also without it, so.....
    I just am sorry for not reading other threads and relating to people who might need. this is what I appologize about.
    I understand. But there are plenty of others here to read all the threads and respond to them. In time, you will likely participate more and comment on those threads that have some personal meaning to you, where you feel you have something to offer. There is no rush, everyone will get their questions answered and be welcomed to the group.
    Anne, dx'ed April 2011

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    Quote Originally Posted by mrtmeo View Post
    I totally understand what you are saying about not being able to contribute and help others on other threads when our life drops out from under us like your loss.
    When my mom seems hopeless, I can't possibly read other threads and try to contribute.
    All I can think about is losing her because I couldn't find her the right dr soon enuf.
    I'm sorry this has become the reality for you, mrtmeo. I believe you are doing the best that you possibly can. It is sad that choosing doctors ends up being such a gamble sometimes, especially with a rare illness. I pray that your mom will pull through this and resume living the life she led before. It hasn't been a lot of time, relatively speaking, since her treatment was started. So there is hope things will turn around.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I'm sorry this has become the reality for you, mrtmeo. I believe you are doing the best that you possibly can. It is sad that choosing doctors ends up being such a gamble sometimes, especially with a rare illness. I pray that your mom will pull through this and resume living the life she led before. It hasn't been a lot of time, relatively speaking, since her treatment was started. So there is hope things will turn around.
    I have seen improvements with others and in the literature and other testimonies thru out a year after treatments, yet, her nephrologist seems to think she will not have any further improvements with her kidney function when she is only in the 5th month from start of treatment.
    When she finished her treatments, her nephrologist said he could save her kidney function and he expected it to return to near normal creatinine of <1.5.

    That never happened and I don't think the Mofetil is helping, but won't know for sure for a couple weeks when she gets blood work again.
    He also, doesn't think she can handle the ctx even tho she had a one week pulse dose with no problems.
    He wouldn't do plasma exchange either.

    He claims to have 30 years experience with vasculitis, but I don't see it.
    I'm sure it is because she 76 years old with copd, but I believe every life is worth every possible effort regardless of age.
    I think I need a 2nd opinion.
    Last edited by mrtmeo; 11-03-2014 at 03:24 PM.

  5. #425
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    Thanks for sharing your mom's age, mrtmeo, as I was curious. 76 is still young enough to reasonably expect some good years ahead and her life is certainly worth saving. I suppose you might consider finding another doctor, or consulting with a recognized vasculitis expert via the VF; I know you are familiar with all that. I'm not one to talk because I'm being treated by a pulmonologist who is not a WG expert, but then I don't have a difficult or unusually severe case so far and am doing well. But many of us use a rheumatologist as our main overseeing doc, as I'm sure you know, and still have the rest of the team such as nephrologists, ENTs, pulmys. One of our illustrious members who passed away, Al, used only a nephrologist because that was his main issue, and that is not unheard of. That wasn't what killed him, however; it was a massive blood infection presumably from something he was exposed to and couldn't fight off in his immunosuppressed state. I believe he was on Imuran and something like 9mg. pred, and not hospitalized before becoming gravely sick, but pursuing his usual interests and activities. The point was he was a smart man and knew a lot about WG but didn't think he needed to see anyone but his nephrologist, whom he thought highly of and I presume had some vasculitis experience. So I guess that's what you'd like to think of your mom's doc, although it's becoming clear you have doubts. I understand the difficulty of changing docs, though... you don't know the next one will be any better, etc. Best wishes in dealing with this difficult situation; it is a lot of weight on your shoulders. Best to your mom. Was she not on RTX and scheduled for another infusion at some point?
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Thanks for sharing your mom's age, mrtmeo, as I was curious. 76 is still young enough to reasonably expect some good years ahead and her life is certainly worth saving. I suppose you might consider finding another doctor, or consulting with a recognized vasculitis expert via the VF; I know you are familiar with all that. I'm not one to talk because I'm being treated by a pulmonologist who is not a WG expert, but then I don't have a difficult or unusually severe case so far and am doing well. But many of us use a rheumatologist as our main overseeing doc, as I'm sure you know, and still have the rest of the team such as nephrologists, ENTs, pulmys. One of our illustrious members who passed away, Al, used only a nephrologist because that was his main issue, and that is not unheard of. That wasn't what killed him, however; it was a massive blood infection presumably from something he was exposed to and couldn't fight off in his immunosuppressed state. I believe he was on Imuran and something like 9mg. pred, and not hospitalized before becoming gravely sick, but pursuing his usual interests and activities. The point was he was a smart man and knew a lot about WG but didn't think he needed to see anyone but his nephrologist, whom he thought highly of and I presume had some vasculitis experience. So I guess that's what you'd like to think of your mom's doc, although it's becoming clear you have doubts. I understand the difficulty of changing docs, though... you don't know the next one will be any better, etc. Best wishes in dealing with this difficult situation; it is a lot of weight on your shoulders. Best to your mom. Was she not on RTX and scheduled for another infusion at some point?
    Hi Anne,
    My mom was given a one week pulse dose of ctx, waited 2 weeks and given 4 infusions of rtx.
    She was in a big long flare the whole time and a couple months after until she got leukopenic (very low wbc).
    She had energy and felt better the day she went leukonpenic (on Imuran), but her wbc came back to normal within a week.
    Also, she had never become anca neg nor mpo titers down to normal or zero.
    Most people become anca negative with 3 months from start of treatment.
    Many of the symptoms that were flaring are gone, but the kidneys have not been able to heal or stop being attacked.

    If I get her another dr, I have to get ALL her records to that dr and her case is a long and complicated one.
    They don't tend to look at her records before seeing her and don't know what is all going on.
    I try to explain it quickly, but they seem to lose interest.

    Usually when someone is not responding to a treatment, they try another.
    He doesn't think she can handle the ctx and that makes no sense to me.
    People in worse shape are in the hospital given ctx.

    The last thing that complicates her case is that she in benzodiazepine withdrawal (valium taper).
    This is what I believe may have triggered this disease in the first place.
    Maybe I should have gotten her a rheumatologist involved, but I haven't found a good one and don't like the prohealth system she is in.

    What is the name of the buddy you described above?

  7. #427
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    Quote Originally Posted by mrtmeo View Post
    Hi Anne,
    What is the name of the buddy you described above?
    His name was Al Swanson, and I think maybe his user name was just Al. You will find lots of posts from him on the forum between mid 2011, when I think he joined, and mid 2012, which I think is when he passed away. He was very highly thought of on here.

    I appreciate all your sentiments about changing doctors, transferring records, etc. I also would like to see your mom get a chance at trying CTX beyond the one treatment she got early on. I haven't really heard of anyone being considered unable to handle it, that I remember. The dosage is based on body weight, as I'm sure you know. And I'm in the same predicament about rheumatologists. I know that most of them have little or no WG experience, and I'd have to travel some distance to see the ones that are known for that in this area. I did find out about one in my town with vasculitis experience but have been dragging my feet about trying him out, for some of the same reasons, the medical records, having to start over, etc. I don't know why docs don't read records better before an appt. and I have also experienced the lack of interest when I try to explain what is going on, what some other doctor said, or whatever. It can really be quite disheartening. Maybe there is someone near you on the forum who can recommend a good doc.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    His name was Al Swanson, and I think maybe his user name was just Al. You will find lots of posts from him on the forum between mid 2011, when I think he joined, and mid 2012, which I think is when he passed away. He was very highly thought of on here.

    I appreciate all your sentiments about changing doctors, transferring records, etc. I also would like to see your mom get a chance at trying CTX beyond the one treatment she got early on. I haven't really heard of anyone being considered unable to handle it, that I remember. The dosage is based on body weight, as I'm sure you know. And I'm in the same predicament about rheumatologists. I know that most of them have little or no WG experience, and I'd have to travel some distance to see the ones that are known for that in this area. I did find out about one in my town with vasculitis experience but have been dragging my feet about trying him out, for some of the same reasons, the medical records, having to start over, etc. I don't know why docs don't read records better before an appt. and I have also experienced the lack of interest when I try to explain what is going on, what some other doctor said, or whatever. It can really be quite disheartening. Maybe there is someone near you on the forum who can recommend a good doc.
    Hi Anne,
    Maybe you should look up the local rheumy just in case.
    I have found the rheumy's are very booked in advance.
    You never know when things can hit fast and you need an appt asap.

    I just made an appt with a local rheumy that is treating a weg's patient from the vasculitis foundation, but it is a whole month away.
    Thanks for the recommendation of going with more than one specialist because a team approach is far better with other options.

  9. #429
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    Quote Originally Posted by mrtmeo View Post
    Hi Anne,
    Maybe you should look up the local rheumy just in case.
    I have found the rheumy's are very booked in advance.
    You never know when things can hit fast and you need an appt asap.

    I just made an appt with a local rheumy that is treating a weg's patient from the vasculitis foundation, but it is a whole month away.
    Thanks for the recommendation of going with more than one specialist because a team approach is far better with other options.
    Of course, you are absolutely right. He is even in the part of town closest to me. Part of me is afraid of what the guy currently treating my WG will say, which is of course stupid. He can't argue that a person with WG should be seeing a rheumy. I seem to be having a little flare every winter, and it would be nice to have a new doc before then. Appointments with docs here seem to be easy to get fairly soon; maybe there are a lot of them per capita, I don't know. But I should look into it so I know what the deal is. People on the forum have been telling me for YEARS that I should find a new doc. And BTW, congrats on taking that step on your mom's behalf.

    BTW, lets remember that this is Phil's thread and maybe we are wandering off topic from that a little....
    Last edited by annekat; 11-04-2014 at 11:26 AM.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    BTW, lets remember that this is Phil's thread and maybe we are wandering off topic from that a little....
    Agreed.
    I hope everything is going okay, Alysia.
    Haven't hear from you for a while.

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