Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hey guys, just wanted you all to know that it was lonely in the chatroom tonight, I've waited from 8pm-8:38pm.. Hope all is well, but I'm checking out. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Hi ,Missed you in the chatroom last night! I had a full day at the hematologist's office and the hospital getting more bloodwork done. Was worn out by the time I got home. So I was snoozing during chat time.I did dind out something interesting about my abn von willegrands and factor 8 tests from a couple of weeks ago. Mine were high and that suggests tendancy to throw clots. It is especially unusual in that I am a bleeder also (documented >850cc blood loss during a hysterectomy in 1999 and threw a clot then also...other instances too). My dilemma is this AICD surgery coming up. The hematologist was at a loss and suggested I take a baby aspirin but I reminded him I have a hx of diverticulosis with a GI bleed (3 yrs ago). So that was a no go. The ARNP that did the "pre-dr" assessment said I could have something called chronic DIC (nasty thing to have in an acute setting b/c the pt bleeds out through all orifices if not stopped). The dr had no answer for why I'm going both ways: bleeding AND potential for clots. He did get a sample of my blood to look at under a scope and then sent me for a template bleeding test (not done anymore in the way it used to be done but the tests now should reveal the same results per the lab staff). So not sure what to do: AICD??? Risk getting another clot (1999)??? When the dr walked in he took one look at me and said "you need to think about getting that wt off". I reminded him the majority of my wt problem now is 2+ yrs of steroids!!! He then said "oh, that's true...steroids will cause wt gain and keep it on you" (duh). Then he said he didn't know enough about sarcoidosis and whether it could affect the blood like mine is affected. So I'm to call back today to talk with the ARNP (who was very knowledgeable in the general blood area but didn't know about sarcoid) about my results, etc. What a mess...I feel worse than I did about all of this...don't know what to do. I walked into that office with my typed hx on a silver platter for this dr...very detailed. I walked out of there bumfuzzeled (is that a word?). Boils down to me being scared and not knowing what to do. Sorry for the rambling...I'm at a loss.Blessing to you and all,Becky wrote: Hey guys, just wanted you all to know that it was lonely in the chatroom tonight, I've waited from 8pm-8:38pm.. Hope all is well, but I'm checking out. Hugs, Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Becky, if they haven't already they need to check you for "Protien S" its a bleeding disorder. I know about DIC, and yes that is a horrible thing, I've never heard of it being chronic. Protien S is where you blood doesn't clot well, yet you are prone to blood clots inside your body.. I'm sure they've done this, but ask them anyway. -- Re: CHATROOM Hi ,Missed you in the chatroom last night! I had a full day at the hematologist's office and the hospital getting more bloodwork done. Was worn out by the time I got home. So I was snoozing during chat time.I did dind out something interesting about my abn von willegrands and factor 8 tests from a couple of weeks ago. Mine were high and that suggests tendancy to throw clots. It is especially unusual in that I am a bleeder also (documented >850cc blood loss during a hysterectomy in 1999 and threw a clot then also...other instances too). My dilemma is this AICD surgery coming up. The hematologist was at a loss and suggested I take a baby aspirin but I reminded him I have a hx of diverticulosis with a GI bleed (3 yrs ago). So that was a no go. The ARNP that did the "pre-dr" assessment said I could have something called chronic DIC (nasty thing to have in an acute setting b/c the pt bleeds out through all orifices if not stopped). The dr had no answer for why I'm going both ways: bleeding AND potential for clots. He did get a sample of my blood to look at under a scope and then sent me for a template bleeding test (not done anymore in the way it used to be done but the tests now should reveal the same results per the lab staff). So not sure what to do: AICD??? Risk getting another clot (1999)??? When the dr walked in he took one look at me and said "you need to think about getting that wt off". I reminded him the majority of my wt problem now is 2+ yrs of steroids!!! He then said "oh, that's true...steroids will cause wt gain and keep it on you" (duh). Then he said he didn't know enough about sarcoidosis and whether it could affect the blood like mine is affected. So I'm to call back today to talk with the ARNP (who was very knowledgeable in the general blood area but didn't know about sarcoid) about my results, etc. What a mess...I feel worse than I did about all of this...don't know what to do. I walked into that office with my typed hx on a silver platter for this dr...very detailed. I walked out of there bumfuzzeled (is that a word?). Boils down to me being scared and not knowing what to do. Sorry for the rambling...I'm at a loss.Blessing to you and all,Becky <topdat (AT) bellsouth (DOT) net> wrote: Hey guys, just wanted you all to know that it was lonely in the chatroom tonight, I've waited from 8pm-8:38pm.. Hope all is well, but I'm checking out. Hugs, Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 ,I didn't know about this so greatly appreciate the information. I will ask the ARNP this morning when I call about my lab results. I wasn't aware of a chronic DIC either so looked it up when I came home.Couldn't find much about it but it does exist. I was sure surprised! I'm teetering on this AICD thing now as no one seems to know what's going on bloodwise. When the hematologist said they would be putting the wires for the AICD in through my femoral artery I almost laughed (can you imagine someone living the rest of their life with wires to their heart all the way from the leg??? When he said that I started re-thinking his knowledge base!). The story is long but scary!Thanks a bunch,Becky wrote: Becky, if they haven't already they need to check you for "Protien S" its a bleeding disorder. I know about DIC, and yes that is a horrible thing, I've never heard of it being chronic. Protien S is where you blood doesn't clot well, yet you are prone to blood clots inside your body.. I'm sure they've done this, but ask them anyway. -- Re: CHATROOM Hi ,Missed you in the chatroom last night! I had a full day at the hematologist's office and the hospital getting more bloodwork done. Was worn out by the time I got home. So I was snoozing during chat time.I did dind out something interesting about my abn von willegrands and factor 8 tests from a couple of weeks ago. Mine were high and that suggests tendancy to throw clots. It is especially unusual in that I am a bleeder also (documented >850cc blood loss during a hysterectomy in 1999 and threw a clot then also...other instances too). My dilemma is this AICD surgery coming up. The hematologist was at a loss and suggested I take a baby aspirin but I reminded him I have a hx of diverticulosis with a GI bleed (3 yrs ago). So that was a no go. The ARNP that did the "pre-dr" assessment said I could have something called chronic DIC (nasty thing to have in an acute setting b/c the pt bleeds out through all orifices if not stopped). The dr had no answer for why I'm going both ways: bleeding AND potential for clots. He did get a sample of my blood to look at under a scope and then sent me for a template bleeding test (not done anymore in the way it used to be done but the tests now should reveal the same results per the lab staff). So not sure what to do: AICD??? Risk getting another clot (1999)??? When the dr walked in he took one look at me and said "you need to think about getting that wt off". I reminded him the majority of my wt problem now is 2+ yrs of steroids!!! He then said "oh, that's true...steroids will cause wt gain and keep it on you" (duh). Then he said he didn't know enough about sarcoidosis and whether it could affect the blood like mine is affected. So I'm to call back today to talk with the ARNP (who was very knowledgeable in the general blood area but didn't know about sarcoid) about my results, etc. What a mess...I feel worse than I did about all of this...don't know what to do. I walked into that office with my typed hx on a silver platter for this dr...very detailed. I walked out of there bumfuzzeled (is that a word?). Boils down to me being scared and not knowing what to do. Sorry for the rambling...I'm at a loss.Blessing to you and all,Becky <topdat (AT) bellsouth (DOT) net> wrote: Hey guys, just wanted you all to know that it was lonely in the chatroom tonight, I've waited from 8pm-8:38pm.. Hope all is well, but I'm checking out. Hugs, Get your email and more, right on the new Yahoo.com Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
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