The Hemophilia and Thrombosis Center of Nevada 2020 W. Palomino Lane Suite 110 Las Vegas, Nevada 89106 702-385-2702
since May 5, 2008 Last updated May 5, 2008 webmaster RIS |
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MITRAL VALVE SURGERY AND VON WILLEBRANDS DISEASE My wife has mitral valve prolapse and severe mitral valve regurgitation, so her doctor has suggested mitral valve surgery. He suggests mechanical mitral valve because she is young (38). Unfortunately, my wife has von Willebrand's disease too. Is von Willebrand's disease contraindication for mechanical mitral valve? Best wishes, Franis Croatia Thank you for logging onto our
web site.
VON WILLEBRAND'S DISEASE AND BLEEDING
I am being tested for von
Willenbrand's disease or a platelet dysfunction. I thought I had no history
of any bleeding disorders but recently thought of my mothers older sister who
died in her twenties (about 1940's) She died of a brain hemorrhage. Could this
have been a result of undetected von Willebrand's?
Thanks
Peggy
Thank you for logging onto our web
site. Typically patients with von
VON WILLEBRAND'S DISEASE AND UTERINE ABLATION
I was diagnosed with a very mild form of von
Willebrand's disease approximately 3 years ago when I was pregnant with my
second son. Since then I had a C-Section with some bleeding problems during
the procedure and afterwards. I was treated with Premarin which seemed to
help. I have not had any problems other than a very heavy monthly period
since my C-Section. Until now, of course. On 2/6/02 I had my tubes tied and
an endometrial ablation. I had some problems bleeding afterwards because of
my activity but I eventually stopped, until 2 days ago. Now I am passing very
large clots (child's fist size), and I have continuous bleeding. Bright red.
I am going through a super plus tampon and a maxi pad every hour to 90 mins.
I have called my doctor twice and he told me to keep my feet up and gave me a
RX for medroxyprogesterone 10mg tabs, to be taken 2 pills once a day. My
concern is that I am feeling very week and have not had any bloodwork done
yet. I'm hot and flushed, sweaty and extremely dizzy when I am up.
Any help you could offer me so that I might
pass it along to my physician would be very appreciated.
In our experience, every uterine
ablation that we have done in a patient with VON WILLEBRAND'S DISEASE AND PLAVIX FOR HEART ATTACK
I have Von Willebrand's Disease and suffered a
massive heart attack 9 months ago. I was put on Plavix. From the start I began
having problems. I'm bruising more now than ever. I self inject medication 8
times a day. I bleed profusely from the sight I use to inject. A few times in
the past 9 months my blood count was very low. I am also having the
capillaries and veins in my leg coming out often. I will never wear a skirt or
shorts again. Last night I suffered a subconjunctival hemorrhage in my right
eye. The Dr at the emergency department told me to stop the Plavix at least
for a few days. I'm concerned about going back on the drug. I don't want to
have another heart attack but I also don't want to bleed to death. Could I
have your opinion on this please. I am 50 yrs old.
Thank you for logging onto our web site. VON WILLEBRAND'S DIAGNOSIS
My 13 year old daughter has been
diagnosed with borderline Von Willebrand's and extreme low iron & blood
pressure - she was having extremely bad periods with large blood clots and
experiencing them from 7 days for a month then would get them again after say
two weeks. She was put on iron tablets & the pill.
Today we have gone for a follow up with
her Doctor and her iron levels are lower than when she diagnosed in November
last year and she is still borderline Von Willebrand's. She has been referred
onto a Haematologist What is the outcome of her problem - how is it managed -
we could not get an appointment until April so any information would be of
help Regards Concerned Mother of Emily
In response to your question, the first item is the iron deficiency and anemia. It is important that your daughter is on appropriate dosages of iron. The usual dosage is Ferrous Sulfate 325 mg three tablets daily. OR one slow release iron tablet, slow Fe is equivalent. If she is on this dosage of iron and there is no improvement in her blood count, than she is unable to keep up with the amount of bleeding she has had. In this situation, an iron infusion by vein may correct the iron deficiency as we are able to administer several months of iron in one afternoon. It is important that this be administered by a specialty center that is used to monitor this therapy as there is a risk of allergic reactions. I would not wait until April to correct the blood count, as your daughter will feel better with a normal blood count and it would be best to correct the anemia before a transfusion becomes necessary. The von Willebrand's testing must be done by a specialty laboratory. It should be interpreted with the blood type, as patients with blood type O have lower levels of these factors and may be falsely diagnosed. Also, the levels should be checked while OFF any hormones as hormones may elevate the levels and the diagnosis may be missed. It is also often useful to check family members as this is a familial disorder. There is excellent treatment available, see bleeding disorders on the web site.
My
8-year old daughter has just been diagnosed with type 1 von Willebrands. She
suffers from frequent bloody noses, although they are not particularly heavy or
long in duration. Now I am told to administer a spray each time she has a bloody
nose and each time she bumps her head. She is a very active child, fearless in
fact, so she bumps her head quite often. She always wears a helmet biking and
roller blading, skiing and snowboarding. She is an avid ice skater, jumps and
all. Do I have to curtail her activities? Do I have to worry about brain
bleeding everytime she bumps head with another girl when playing tag? Also I am
told that the spray can adversely affect her eleoctrolytes, so I wonder if the
treatment is really necessary? The primary goal of treating persons with bleeding disorders is to improve their lives. This includes helping them to live NORMALLY for longer. Therefore, we encourage all our children to continue active lives. This includes sports, however we usually try to encourage them to NOT participate in contact sports such as hockey that are more likely to result in injury. Persons with mild von Willebrand's disease do not usually suffer from head bleeds unless they have very low Factor VIII levels. Therefore, with minor bumps we would usually only watch them closely as you would any child. Recurrent nose bleeds are not life threatening, but may result in anemia and interfere with activity. Therefore, for recurrent nose bleeds we recommend the use of aminocaproic acid. For others, we use the nose spray you refer to. Usually it is just a matter of learning to live with this disorder to maintain health without interfering with normal life. DDAVP nose spray if used more than three days in a row or in infants and babies may result in lowering of the sodium level in the blood. This usually does not occur, but the medication should not be overused. I would encourage you to find others in your community with this disorder as speaking with them usually is helpful. If you prefer, I would be happy to help you contact one of our HART board members with similar problems and you could e mail or call them.
Dr. Shopnick,
I'm 37, type O+, and I've been trying to get pregnant for about a year. After
2 very early miscarriages, the doctors ran a whole slew of blood tests. What
came back initially pointed to a clotting disorder (compound heterozygous
for the MTHFR gene mutations, and slightly elevated anticardiolipin Igm) .
They started me on lovenox and baby aspirin. After I bruised so badly on it
(although from everything I've read, most people bruise badly from the
injections), they did more tests which came back pointing to von
willebrand's and they took me right off the lovenox and aspirin. How can I
have both of these problems at the same time? How could I treat one without
exacerbating the other? The only symptom I've ever displayed for vWB is that
I bruise easily. Normal periods, (short cycle though, but I don't think
that's associated), and I've never had any clotting problems that would
point to thrombophelia. The doc said that it's possible for the miscarriages
to be caused by clotting, but it was so early there was no way to tell. So
for months I've been concerned with making sure I don't clot during
pregnancy and delivery, and now I'm worried that I might hemorrhage?
Help....
Thank you!!
Wendy
Whether the compound heterozygous mutation of the MTHFR without an elevated homocysteine is a risk factor for blood clots is controversial. If a risk factor, it is probably a very minor one. However, when you review the recent literature regarding problems with pregnancy, this may be of importance. Lovenox alone at a dosage of 40 mg daily may be adequate to ensure a healthy baby and the aspirin may increase bleeding risk in individuals with von Willebrand's disease. In regard to the diagnosis of von Willebrand's disease, it is important that the labs be done in a specialized clotting laboratory. (Please see information under bleeding conditions). Typically people with this disorder do not have life threatening hemorrhage. Both diagnosis are not uncommon in the general population so it is not unheard of that you have inherited both. They may balance each other actually. I would make certain that you actually have vW disease and then discuss the recent literature regarding lovenox alone with your physician.
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