Why we must know our health history…my sister’s recent experience

March 24, 2012

In my book, Talking about health, I weave several themes through the book in a number of ways. One of these is: know your health history, know your family health history, and know what is ‘normal’ for you. My youngest sister had a recent experience that she thought would remind us of just why it is so important to do these things and to be our own health advocate.

First, let me say that my sister is trained as an intensive care nurse. I begin with that because her doctors know of her background, and yet even she feels that it is difficult to stand her ground and act on her own behalf in her own best interests sometimes. And she has a lot of medical education and experience to back her up.

Our family, as illustrated in Talking about health, inherited the factor five leiden mutation which increases risk for blood clotting. There are a number of other risk factors for blood clotting and we also have inherited some of these as well. In my sister’s case, she has a couple of factors contributing to risk, and she tells about them in her story in my book. Well, in the past several months, a gynecological finding  led to the recommendation that she take Provera [http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000688/ ]. Here are some highlights of what followed when she said that she thought that would not be a good idea based on her health history and…

“Well, in my case, the gynecologist did not have the written report from the hematologist about my having the risk factors…..just my verbal statement. My primary care doc that I see every year didn’t have it either because we were at the other hospital for my pregnancy and diagnosis of the Factor V Leiden Mutation and the positive antiphospholipid antibody results.  Anyway, I asked my primary care doc about it last year, because I wanted to get the hematology verification so that I wouldn’t be in this predicament if there was ever an emergency.  He said, ‘Sure, I can get that test.  No problem.’”
“So, I proceed to get my blood drawn. After I got home, I received a call about two hours later from the doctor.  He says, ‘Nope, you don’t have anything wrong.  That level is normal!’  He had mistakenly run a Factor V Assay level…..which we all have Factor V within our blood and it was within the normal limits!!!”
“I didn’t know how to handle that, so I thought I would take it up with him again this year. Unfortunately, however, due to the problems I’ve been experiencing with my uterus, my gynecologist wants to treat me with Provera. When I told him I had Factor V Leiden Mutation, he wanted verification. I gave him my hematologist name from ten years ago, but she had retired and they couldn’t find my records. That’s when my gynecologist said, “Well, I’m sure it will be fine to take the Provera. It’s not very strong.” I said, ‘Well, I’m not comfortable with that, can I please see a hematologist! He said, ‘Well, if it will make you feel better about it, we can get an all clear from him.’  I felt as though he were just pacifying me, but I was glad he agreed to the referral.”  
“I went to the hematologist’s office. They literally (I counted them) drew 13 vials of blood. After the results came back, he told me “NO” you may NOT take any hormones if you have the Factor V Leiden mutation, even if it is only the heterozygous.  He pulled up the stats on the latest research about taking Provera when you have the Leiden V Factor. Something like 1 in 12,865 people will develop a DVT if you don’t have any genetic stuff and take the Provera.  That’s not too bad.  However, when you add the Leiden V Factor and Provera, you have (I think he said) 1 out of every 345 people that will develop a clot.  He went on to say that when you start layering the different thrombosis criteria, like antiphospholipid antibody and the lupus anticoagulant, patients can be at a very high risk for a thrombotic event.”
“He went on to say that gynecologists often recommend ‘just a little’ hormone therapy, even stating that the topical form will be fine, but he warns it is not fine. He said NO HORMONES….NOT NOW…NOT EVER….is his recommendation for me. I will literally make a few copies of all this stuff this time and stick one of the copies in my fire protected vault so that I won’t have to repeat all of this in the future.”
“So…I had my follow-up with the hematologist and it has once again been confirmed that I do have Factor V Leiden heterozygous. He confirmed that I should not take any type of hormonal therapy.  Even AFTER going to the hematologist, my gynecologist is stating that progesterone is not a problem.  He says, ‘It’s the estrogen that creates clotting. I told him the hematologist was very specific that ANY therapy with either progesterone or estrogen should be avoided.  He ended with telling me that he would call the hematologist and talk to him about it.  He said that in the end, he would certainly heed whatever recommendations the hematologist suggested because it was such an advanced and tricky field.”
“It really is the case that you have to be a confident, assertive, and persistent patient to receive the holistic care that is necessary for a positive outcome, but it can certainly be a very exhausting process!”
She had surgery. Her results were fine… They put her on a blood thinner several days before the surgery and used special socks and a special surgical table to lessen any risk for blood clotting.  Thank goodness she advocated on her own behalf!


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One Response to “Why we must know our health history…my sister’s recent experience”

  1. Only~A~Little~While says:

    To confuse us even more, there are so many different sites to help us research a drug. Some of the resources provided to assist us in analyzing a specific drug provide an extensive list of side effects, while others do not.

    To find that blood clots and pulmonary embolism are a possiblity after using Provera, I had to scroll to the bottom of the side effect information and then click on the “see other side effects” button, which then took me to another page where I had to scroll down and find the “side efffects for professionals” list. Once there, I had to continue scrolling to the “Cardiovascular” category which then supplied me with the list of these serious occurences amongst users. (This was the official FDA information on the drug Provera found on http://www.drugs.com site.)

    Thanks for this post which serves as a reminder that we must be confident and openly communicative with our health care providers to ensure that we receive the best care possible!

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