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I'm a bleeder I'm a bleeder

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Unread 03-09-2012, 03:31 AM
I'm a bleeder

I was due to have my hysterectomy on 9th March, but was moved forward to the 29th Feb.
I had a vagina procedure with a prolapse fixed, which was fine.
My specialist told me that the surgery was very difficult because I bled so much, which didn't really concern me at the time as I was pretty out of it.
I had blood samples taken each morning & afternoon, and then on day 2 after the op I was taken for an ultrasound, then told I was having another surgery.
Apparently my blood levels were dropping, and I had a 10cm blood clot.
This surgery was abdominal unfortunately, & I came out in a bad way. I'd been given 2 bags of blood.
I didn't move for a couple of days & was attached to all sorts of machines as well as a blood drain from my abdomin.

My platelets continued to drop & I was given 4 bags of plasma.
A day after the plasma I could get up without feeling nauseous and was walking around.
My dr was very worried about me & I was in hospital for 8 days.
She contacted a blood specialist who thinks I might have von willebrand disease, which is an inherited blood disease.
I am still getting blood tests to find out the problem.

I guess i am lucky to reach 53 and never know that I had this problem.

Has this ever happened to anyone else here??
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Unread 03-09-2012, 05:31 AM
Re: I'm a bleeder

I'm sorry you had such a rough time. Hopefully things will start looking up now that you are on the mend. Hugs to you!

My experience was difficult but certainly not to the extent you have dealt with. During my TAH my doctor said that everything bled so readily. He told me that it was my muscle tissue that was bleeding profusely and he had never seen that before. Apparently he had to cauterize ALOT! I ended up needing a blood transfusion (also 2 days post op) as the bleeding continued internally, but thank goodness a CT scan showed that it had stopped on its own.

At the moment I'm dealing with the leftover from that incident - the hematoma reabsorbing - and it doesn't feel very nice. I was not given an explanation of why I bled so much because the doctor didn't know.

Did they explain anything else to you about the blood disease other than it's inherited?
Unread 03-09-2012, 10:36 PM
Re: I'm a bleeder

Sorry to hear that you also has a bad time.
I've Googled the disease, but my gyno had never heard of it, and was going on what the blood specialist told her.

She said that if i have it my children will also have it.
My parents and 2 sisters have never had an operation, so I have no idea.
I guess if i do have it, they should all get tested as well.
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Unread 03-10-2012, 12:23 AM
Re: I'm a bleeder

Several years ago I was tested for VonW because I had all the symptoms...docs were stumped that the test came back negative and after months of testing still never figured out why my "blood doesn't work"...but first off, please don't let it scare you...follow up with a good hemotologist, often oncologist fall in to this catagory because cancer effects the blood...but even if you are positive, your kids may be carriers but nit necessarily active VonW, which means they may never experience symptoms, so they'll be fine, worry about you and getting better...its a scary word, but it can be controlled...you may want to consider getting a medical alert bracelet so in the event of an accident emergency workers know to control the bleeding quick...even my employer knows that if I'm hurt get help...another idea is to add an entry to your phone contacts called *ICE* (the * is so it will show first in your list no matter how its sorted and ICE stands for In Case of Emergency), under that entry add a "note" that states you have VonW and that bleeding must be controlled ASAP, that way if you're ever in an accident that renders you unconscious or otherwise unable to respond rescue workers have a way to know you need special medical attention asap.

I know its all rather scary right now...and it is amazing that you found out after so many years...I found out when my husband was seeing an oncologist (who also specialized in hemotology) and I mentioned that I bled easy...they did a bleeding blot test on me (one of numerous lol) and most people clot in about a minute (in this particular test)...anything over 2-3 minutes is "abnormal" at 15 minutes he put a band-aid on it lol...then sent me to a specialist hospital for more 15 minute blot tests among more and no one ever coulld figure out a diagnosis...so now I just have to tell my doctors and dentist my situation so I/they can be prepared...luckily, I didn't have any major issues during my hysto...I'm sorry you did, but at least they've found out why now!! Did they confirm VonW with test or are they suspecting from symptoms? Unless things are different now than 14 years ago when I got tested, its there and you have it but unless there's surgery or an accident your quality of life isn't generally affected...so try not to worry. :-)
Unread 03-10-2012, 01:53 AM
Re: I'm a bleeder

Wow, how frustrating that you don't have a diagnosis.
It's great to read your story..thanks.

Von W is not confirmed. I've had heaps of blood taken & it's being tested, but i was told it would take at least another week.
It's just what the blood specialists suspects from the description given by my gyno.

Good idea with the *ice*.

I'll be worrying about my kids because they are risk takers..bungy jumping, jumping off cliffs etc. OMG. And in remote counties too.
Unread 03-10-2012, 03:22 AM
Re: I'm a bleeder

Try not to worry about them...I'm sure they are fine...and its doubtful a diagnosis would stop them from doing what they love anyway. My blood issues have never stopped me or changed my quality of life...the boss I mention in my post...he's my police chief ;-)

A diagnosis of anything simply lays out a treatment plan, it isn't a label and it should never define you, so while its hard, don't let it consume you either...I suppose that's the best thing about never getting a diagnosis is I've never had a reason to "panic" lol
Unread 03-10-2012, 05:56 AM
Re: I'm a bleeder

That's very reassuring.

I'm glad I haven't known about this problem before now.
I would have probably been a nervous wreck.
Unread 03-10-2012, 09:41 PM
Re: I'm a bleeder

I didn't know before surgery that I had a bleeding disorder. After 4 and 1/2 hours in the initial surgery I went back for severe hemorrhage. According to their notes during the second two and a half hour surgery I was given 4 units of packed cells and two of plasma over and above the normal surgical fluids. I was given more red cells in the ICU.

I experienced a night of hell, intubated while fully conscious, for at least 10 hours. After that the ICU nurses took very good care of me. I was given 2 more units in the ICU (according to my Mom). I got two more units 2 days later.

Still angry. Can we say where our surgery was performed?

My surgeon says that the hospital's ICU docs were responsible for what happened to me. How do I find out what really happened?
Unread 03-11-2012, 01:49 AM
Re: I'm a bleeder

Wow Willowdale.
I can understand why you would like some answers.
At least my gyno is looking into blood disorders.

It seems that you are lucky that the hospital had an ICU, which seems to have saved you.

Has you Dr mentioned why you might have bled so much?

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