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Thread: Where is everyone?

  1. #11
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    HA! I just logged on to talk about why I've been AWOL. Two weeks ago I had my second total knee replacement. This one has been rougher than my first. I ended up in the ER 3 days ago with a heart rate of 37, so I got a complete scan for a blood clot of some sort. Nothing was found, but they took me off one of my blood pressure meds. Heart rate is still in the low 40's, tho. I'm not sure what the next step will be. I generally feel pretty crumby and very tired.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  2. #12
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    Arrgh vdub, this is not good please keep us posted.

    I am on here everyday, but don't tend to comment much anymore.
    Not because I don't want to, but because all of the amazing people, on here, have already given great responses. I would find myself saying "yep, what he/she said"

    This forum was my lifesaver (as well as pred) in the early days and I can't do without it. Okay, now you can call me crazy

    Alysia, don't even think that you can't say anything in here
    Gab, Alysia is right, it feels like you have been on here since day one.

    Mike, Nikki, Pete, Jana, drz & Victor - I'm glad you are all still around too.
    Anne would be extremely busy with the market at Christmas time and I wish her all the best and hope she sells plenty.

    A very merry, safe, Christmas to everyone reading and everyone posting.
    Happy holidays to all that don't celebrate the Christmas tradition.
    May 2017 be everything that we hope for, including a pain free year, no hospitals, and most of all, a cure for WG/GPA

    Love to you all
    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

  3. #13
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    Quote Originally Posted by vdub View Post
    HA! I just logged on to talk about why I've been AWOL. Two weeks ago I had my second total knee replacement. This one has been rougher than my first. I ended up in the ER 3 days ago with a heart rate of 37, so I got a complete scan for a blood clot of some sort. Nothing was found, but they took me off one of my blood pressure meds. Heart rate is still in the low 40's, tho. I'm not sure what the next step will be. I generally feel pretty crumby and very tired.
    So sorry, vdub. I hope they can find soon whats going on. You had enough this year. May 2017 be a year of health, joy, and great trips in your RV. (Thats how you call that big car of you ?)
    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.

  4. #14
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    Quote Originally Posted by mishb View Post
    Arrgh vdub, this is not good please keep us posted.

    I am on here everyday, but don't tend to comment much anymore.
    Not because I don't want to, but because all of the amazing people, on here, have already given great responses. I would find myself saying "yep, what he/she said"

    This forum was my lifesaver (as well as pred) in the early days and I can't do without it. Okay, now you can call me crazy

    Alysia, don't even think that you can't say anything in here
    Gab, Alysia is right, it feels like you have been on here since day one.

    Mike, Nikki, Pete, Jana, drz & Victor - I'm glad you are all still around too.
    Anne would be extremely busy with the market at Christmas time and I wish her all the best and hope she sells plenty.

    A very merry, safe, Christmas to everyone reading and everyone posting.
    Happy holidays to all that don't celebrate the Christmas tradition.
    May 2017 be everything that we hope for, including a pain free year, no hospitals, and most of all, a cure for WG/GPA

    Love to you all
    Thank you from the bottom of my heart, Michelle. I love you.

    FB_IMG_1481656783732_20161214164823306.jpg
    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.

  5. #15
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    So sorry, vdub. I hope they can find soon whats going on.
    About 2 hrs after the last post, I went to the ER with shortness of breath, low heart rate, dizzy, etc. A review of my med records show that all of my running paid off with regard to the heart rate. But, they did a ct of my chest and found what looks like new granulomas. I'm spending the night in the ER. They aren't sure if it is granulomas and a flare or pneumonia. Since I have consistently rx'ed pneumonia vaccines and I haven't been anywhere where I might pickup pneumonia, most money is on it being a flare. More tests are due tomorrow.

    The hospital is full tonight and they don't want to do a x-town transfer, so I'm actually staying o'nite in the ER. Now this is an education! Saturday night in the ER! I'm in my own room, but the sounds I hear are quite entertaining!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  6. #16
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    Sheesh Vdub, sorry to read your news, wishing and praying for a better start to the New Year!

    Michelle I love your style!! You were there, along with others whom I cannot name for fear of missing someone out in MY early years when, as you stated, the Forum was a god send, a crutch, a bright light in the darkness of WG to help me navigate my life.

    I was on the forum 24/7 and it helped me immensley, just recently I was able to travel and meet up with some of those people in person, and for those of you who have experienced this sensation, you will agree, it is the very best of feelings.

    So, as for me right now, I dip in now and again, just to see who is doing what and how you guys are going. I keep in touch on a more day to day basis via FB which I enjoy, I try to keep upbeat and not too bogged down in the minutia of the illness, it will not dominate my life as far as I am able.

    To all of my fellow Weggie Warriors out there, I love you ALL and wish you just the very best for now and for the New Year.

  7. #17
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    Quote Originally Posted by vdub View Post
    About 2 hrs after the last post, I went to the ER with shortness of breath, low heart rate, dizzy, etc. A review of my med records show that all of my running paid off with regard to the heart rate. But, they did a ct of my chest and found what looks like new granulomas. I'm spending the night in the ER. They aren't sure if it is granulomas and a flare or pneumonia. Since I have consistently rx'ed pneumonia vaccines and I haven't been anywhere where I might pickup pneumonia, most money is on it being a flare. More tests are due tomorrow.

    The hospital is full tonight and they don't want to do a x-town transfer, so I'm actually staying o'nite in the ER. Now this is an education! Saturday night in the ER! I'm in my own room, but the sounds I hear are quite entertaining!
    So sorry vdub. I hope that you are already out of the ER. When I was with Phil in the hospital I learned that heart rate can indicate lungs issues.
    I hope they can find for sure what's going on and give you the best treatment asap. Prayers and love to you ♡♡♡
    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.

  8. #18
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    Vdub,

    Hope you've escaped the ER. Also hope they find out what's wrong and get it taken care of.

    Merry Christmas and a Healthy and Happy New Year!!
    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

  9. #19
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    Sorry to hear that. I hope you can get some rest at some point. Thinking good thoughts for you.

  10. #20
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    Well, they have moved me from smallish local hospital to larger regional hospital. They were going to do it with a helicopter, but there was heavy fog at the landing zone, so I had to endure a 2 hr ambulance ride. The pickup chassis that they build ambulances on aren't made for comfort.

    Maybe someone can help me assess this or do some goggling on it.... I have had two doctors now mention that some research has pointed to wegs as a cause of damage to conductive nerve tissue. I hadn't heard this before, but I now have two conductive nerve conditions. The first was my paralyzed diaphragm and now the second. This one has to do with the nerves controlling the heart. Of course, there are many things which could cause the heart nerves to go bad -- age is one and I'm certainly to that point (65). Anyway, I'm at the larger hospital to "probably" get a pace maker in a few hours. My smaller local hospital does pace makers (actually, my brain surgery was done at the local hospital), but I'm now considered a particularly complex situation, so I have about 5 doctors looking at me to determine the next step. All fun....
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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