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Does anyone else deal with a bleeding disorder? Does anyone else deal with a bleeding disorder?

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  #1  
Unread 05-17-2006, 10:12 AM
Does anyone else deal with a bleeding disorder?

I'm feeling alone in this. I was sent to a hematologist recently who definitely believes I have a bleeding disorder. My platelets don't work right but beyond that it is taking a long time to find the specific disorder. He also said I have a disorder, but he may not be able to diagnose it because some disorders are "unspecified" (haven't really been "discovered" yet, but are there). He pushed off my surgery so now I have almost 3 more weeks to wait while on major pain killers, taking 3 or more naps a day, unable to work, usually unable to drive...

I'm also getting different stories about this "bleeding disorder" from the hematologist and from my surgeon who he is advising. I'm afraid they're going to drop me as a patient because I VERY loudly "called them" on these discrepancies, and the way my surgery was post-poned. Their staffs are, I'm sure, dreading my calls. I'm also getting information that is "twisted" (a nice way of saying I'm finding out later that it's inaccurate or untrue).

Anyway, does anyone else have any experience or info that might help me make sense of all this? I understand about the bleeding disorders they're looking at...but if they put off my surgery one more time I'm in trouble. My husband can't even get off work now that they rescheduled. He had to beg for the first date they scheduled. He just started a new job and we can't afford to lose his health insurance right now.

This is so angering, but I feel so helpless about it. The doctors really are in control of all this - I have no say and they told me so.


Julia
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  #2  
Unread 05-17-2006, 12:37 PM
Does anyone else deal with a bleeding disorder?

I'm so sorry you're having to go through all this on top of the hysterectomy. I'm afraid I can't give you any answers as the worst blood problem I have is anaemia - I just wanted to give you my support and best wishes
  #3  
Unread 05-17-2006, 01:08 PM
Does anyone else deal with a bleeding disorder?

Hi Julia--

Is it von Willebrand disease? That is the most common bleeding disorder in women I'm told, but none of my doctors ever seem to know much about it. My sister was diagnosed with it in the early 80's and they put off her hyst for 3 years because of the threat of aids in the blood supply. As it was she needed massive transfusions during her surgery. I think your doctors just want to be prepared for any issues you might have.

I know how frustrating it must be for you to have this delay---I was supposed to have my surgery today and it was postponed just yesterday because my doctor hurt her thumb! I'm lucky in that I work for my brother-in-law so I am a little more flexible with my job, but it still took some finangling (sp?) to get a new date---now not until June 26. The waiting begins again!

At any rate, even twenty years later, my sister is happy she had her hysterectomy, but she recalls the frustration of the wait. I don't think the doctors realize the chunk of time you have to put aside when you schedule these things.

Hang in there---the time will fly once they figure out whats what. Just know that you are not alone.

Cathy
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  #4  
Unread 05-17-2006, 08:11 PM
re: bleeding disorder

Hi,

I have Von Willebrand's Disease. I am scheduled for a Hysterectomy 6/22/06, dut to adenomyois. Von Willebrand's is a type of Hemophilia. Mine is the mildest type. I t has to do with your red blood platelet's. you don't have many, causing your blood to take longer to clot. When I have my surgery, I have to have medication through iv called ddavp. My Daughter's also have it. Mine was found when I was a teenager due to prolonger menstrual cycles. it was somehow found from taking aspirin for cramps. My 1 daughter has it where she is a easy bruiser, the other has very heavy periods. I don't know if this helps. If you have any more questions, feel free to ask. I'll try my best to answer then for you. oh yeah, if that is what you have. you are not to take aspirin at all, because it will thin out you blood.

melash
  #5  
Unread 06-16-2006, 07:37 PM
Does anyone else deal with a bleeding disorder?

I have ITP- idiopathic thrombocipinia pupra. It means for a reason they don't know my body kills my platlets. The dr can give you platlet transfussions during your hyst. They wer going to do that w/ me but the Good Lord took care of me & my platlets were 128,000 during surgery. My prayers are w/ you! It's so difficult to have to go through both horrible conditions at the same time!
  #6  
Unread 06-16-2006, 08:04 PM
Does anyone else deal with a bleeding disorder?

  Quote:
Originally Posted by mspurp
I have ITP- idiopathic thrombocipinia pupra. It means for a reason they don't know my body kills my platlets. The dr can give you platlet transfussions during your hyst. They wer going to do that w/ me but the Good Lord took care of me & my platlets were 128,000 during surgery. My prayers are w/ you! It's so difficult to have to go through both horrible conditions at the same time!

Hi

Wow, i've never heard of it. My Surgeon said he will do a transfusion if he needs to. it's getting closer. 6/22/06. I'm not as nervous as I was before. This past Tuesday, I went for me pre-op. the nurse was very good & explained alot. My surgeon is awesome. Whenever someone asks his name, I hear nothing but positive comments about him.
Thank you for your reply. How long were you in the hospitol for. I was told I will be in there till sunday. (fun)
  #7  
Unread 06-16-2006, 08:20 PM
Does anyone else deal with a bleeding disorder?

Thanks for the replies. I had surgery and they gave me ddavp twice and my counts were off later so they gave platelets, too. They're going to re-test for bleeding disorders in September when my body has had a chance to rest from all the blood loss over the last year. I was borderline for almost all the VWB's, but that's probably due to having lost so much blood? Anyway, I hope we'll figure it out in September.

Thanks everyone!

Julia
  #8  
Unread 06-17-2006, 05:08 AM
Does anyone else deal with a bleeding disorder?

Hi Julia,
You may wish to get a few different opinions. I would highly recommend going to the Medical College of Wisconsin in Milwaukee. They have some top notch folks there that may be able to provide some answers. I know a many a frustrated patient who have gotten help there.
Take care!
Barb
  #9  
Unread 06-17-2006, 08:19 AM
Does anyone else deal with a bleeding disorder?

Thanks, Barb! I'm new here so I didn't even know about that place. I'm so big on 2nd opinions that I'm surprised it didn't occur to me to do that with my blood problem.

!
Julia
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