I finally went to HTC this week and doctor said I do have vwd type 1. She did however do some additional tests. She basically said it is not a big deal explained treatment options if I need them (I do have a surgery that needs finished that had to be stopped due to bleeding). I have 2 boys ages 9 & 11. She said I didn’t need to have them tested unless I wanted to. I do realize that type 1 vwd is the mildest form…but was is the opinion out there about having your kiddos tested?
Also typically how well do doctors handle vwd treatment when surgery is needed? Are they cooperative with the orders given by hematologist? Just a little nervous how that plays out.
Please see my reply to the vWD and school policy issues. It is lengthy but to the point and contains some keywords that help you advocate for yourself. Doctors only meet a few vWD patients in a lifetime and are generally clueless. I would post bloody pictures of my surgery but we have all been there and dancemom might pixellate them- with reason-.
John the elder who went from Hgb of 17 to 12.4 in three days after surgery. Google your doctor's reviews, the hospital administrations don't!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
A diagnosis of VWD of any type can be scary and there is limited information. Most type 1s are very mild and most don’t even know they have it. In that case, as long as your doctors are aware and you reveal that you have a bleeding disorder when having any surgeries or procedures you should be fine. But only you know your symptoms.
On the diagnosis of others…My daughter has type 3 which revealed that my mom, sister and I all probably have at least type 1, with my mom having the most symptoms. None of us have been tested because we don’t exhibit severe symptoms, BUT if asked we do reveal the family history for procedures as a good precaution.
I also have two sons, 10 & 9, who have never shown symptoms and have not been tested. If they ever do show symptoms or have surgeries then I would probably test them, otherwise I don’t see the point if there are no concerns.
My daughter was diagnosed in 2001 with Von Willebrands type 3. It has been a horrible thing for her to go through. It is also so hard to watch her suffer. She has been treated with 5 different medications and all have made her very sick So something new is tried when one fails. She has missed 12 weeks of school this year. She is on the 504 Plan and has a tutor that comes to help her at home. She is very diligent academically is making great grades and will graduate middle school on time.
As for now an abatement /solution eludes her Dr's but they have tried a new approach recently. We won't know if it will successful for a few months. The wait is really tough. We are so lucky to be associated with the tops Dr's that are familiar situation but this form of the disease but is so hard to treat. Thankfully she has required no surgeries but having a tooth pulled caused major trouble. She is our only child and can find little concrete evidence as to how many suffer this in our family. I have Von Willebrands but was never told anything regarding type only that is waxes and wanes probably because of menopause.
The importance of finding a specialist is so important. We have a team of 3 and they all speak with each other frequently.
When I was diagnosed with type 3 and my mother type 1, her family ran out and got tested. It was found that I have a couple cousins who have type 1. I think its important to get your family tested even if they have type 1 if an emergency arises its good information for health professionals to know. And genetically if your boys have kids.
As for surgery, its important for you to trust your doctors. If you don’t get new ones. Ask tons of questions about every aspect. If the doctors won’t answer the question, get new ones. Remember that these doctors work for you. But its your job to make sure they are working together to a point where your comfortable.
I read your other posting and it was very disturbing for someone without vWD, and that much more frightening for someone who knows they have vWD. I am very sorry to hear about all that you have gone through. It sounds horrific to say the least! You make a very important point regarding being our own advocate and looking into doctors and their reviews. My surgeon who had to stop my surgery in November due to bleeding (the only 2nd surgery he has had to stop in his career) was very concerned about felt that there was something wrong. He is the one who has sent me on this journey of being tested through my local hematologist...which has led to the HTC. He said he would not take me back into surgery until I was cleared by a hematologist. I think he is definitely on board...my concern is that the doctor's are never the ones who administer the actual medications. I guess it all comes back to being your own advocate...LOUDLY! Johntheelder said:
Please see my reply to the vWD and school policy issues. It is lengthy but to the point and contains some keywords that help you advocate for yourself. Doctors only meet a few vWD patients in a lifetime and are generally clueless. I would post bloody pictures of my surgery but we have all been there and dancemom might pixellate them- with reason-.
John the elder who went from Hgb of 17 to 12.4 in three days after surgery. Google your doctor's reviews, the hospital administrations don't!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thank you all for your input. This is still a bit overwhelming to me and I am still trying to understand the medications/treatments. I have a complicated medical history outside of this new diagnosis. I thought I would receive more education going to the HTC, but I think I was left with more questions than answers. I have all of my medical records (in regards to surgeries) and as I have gone back to get lab results post-surgery, it looks like that I was frequently anemic after procedures, but it was never addressed and I was never told. Going through your own medical records is often eye-opening....what you experienced and what they dictated are not often the same event! But that is a different story for a different day!
I do have concerns for both of my boys. My youngest who is 9, is a high energy, accident prone child and is a frequent flyer to the ER. I guess there is a lot to consider.