Yesterday was my appointment at the UCSF Hemophilia Treatment Center.
Let me tell you, I am so glad we left Gracie with family friends for the day. We were there from 12:30-4:30! It was NUTS. Then add the two hours there and two hours back...yesterday was a looooong day.
I was never more nervous for an appointment in my LIFE. I think a great deal of why was because I didn't know ANYTHING. I hadn't let myself google it, and what the referring doctor had told me wasn't much and it wasn't good.
I came prepared and armed with a lot of questions though and my doctor is amazing. She answered all of my questions without me even asking.
What I have was not nearly as bad as it could be, it really is the best case scenario for the disorder I have; which is...
- I have Factor VII Blood Disorder. ("Hemophilia" is a title reserved for Factor 8, Factor 9 and sometimes Factor 11--who knew? Not me.)
- It is really really really freaking rare. Only about 14,000 people world-wide have it.
- My disorder is most likely caused by a spontaneous gene mutation.
- My levels are in the "moderate" category. Meaning my deficiency isn't as bad as it could be but it's not as good as it could be either, I am in the middle range. Which is still good.
Here are the specifics:
Because my levels aren't severe, I should be just fine to get pregnant and have babies!!!! Apparently, when you are pregnant, your hormones raise your other factor levels higher so it compensated for my low levels when I was pregnant with Grace; that is how I was able to have a normal delivery but longer recovery time. The doctor said there should be no reason why that couldn't happen again! :) But to obviously consult and inform my OBGYN. (Which I mean...duh.)
I will have to be monitored while I am pregnant, and it will most likely mean that I am labeled "High Risk." But that label is reserved for my OBGYN to put upon me and is not immediately there just because of this disorder.
The third trimester is where it becomes important for my levels to be checked frequently, because that's when your body is preparing for birth and for the occasion of losing a lot of blood.
There is a chance I will pass this on to my children so they all have to be tested for it. (Grace is getting tested on Tuesday when she gets her shots.) The good news there, is that it will never be worse than my own disorder. If they were to get it, their levels would most likely would never be a problem.
We will most likely get genetic testing done on Daniel and myself before we have more children, but that is still up in the air.
- Day-to-Day Life
Because my levels aren't severe, I do not require weekly medication. This also means my disorder will not impact my day to day life.
I can never take aspirin, ibuprofen, or anything that could thin my blood. Tylenol only.
I have to wear a medical alert bracelet at all times.
When I am not pregnant I should always be on a hormonal birth control. Not really a change for me considering I am such a proponent for IUD's.
- Medical Impact
Wherever I am living, I have to establish contact with a doctor at a hemophilia treatment center. Because my blood disorder is so rare, there are a select amount of people who know how to treat it. I also have to consult with that doctor before I have any procedure done.
Which is also why any medical procedure I need to have done should be done in a hospital with a hemophilia treatment center in it. A Factor VII specialist will be in the room with me to ensure that if something were to go wrong because of my disorder, someone who knows the disorder and the logistics of it, will be able to step in and correct it.
I have to have an IV treatment of engineered Factor VII before any procedure my doctor deems a big enough risk. This is to bring my Factor VII levels as normal as possible before a surgery to lessen the chances of bleeding too much. With that is a risk of clotting, which can happen if the amount of engineered Factor VII is overshot. So I will most probably have to stay in the hospital for a longer period of time to make sure I don't throw a clot and then a little extra caution after.
I have to keep up care to have my levels tested throughout my life (as this can't be cured and I will have it for the rest of my life.) While it is very very unlikely my levels will change, we still have to keep on top of it all. Obviously.
BASICALLY it's a lot of extra work and extra caution (and is definitely making me veto my dreams of having a boob job later in life...) and I have to wear a medical bracelet.
That's pretty much it and I know that seems like a lot of information, but it's really not all that bad.
It's all just to make sure nothing happens and if it does to make sure I am in best hands possible when it happens.
Answering Questions You May Have That I Had
- Why was this not caught by previous doctors?
Factor VII is so rare, that it is not a commonly tested for problem. My levels aren't severe, and I don't present most of the clinical symptoms so I've just flown under the radar.
- Why have I had other surgeries and haven't had bleeding problems?
This is mainly due to three things:
1.) The surgeries I have had done were mostly done laparoscopically . Which is minimally invasive and doesn't draw a lot of blood anyway.
2.) The two other surgeries I have had where blood could have have been a problem, I had a longer recovery time because I did bleed for so long afterwards.
3.)Luck. In not so many words, my doctor said as much. It is lucky that I didn't have any problems with any surgeries or my birth with Grace. Plain and simple. But just because I came out of those surgeries okay, doesn't mean I can be complacent and not be cautious with any future surgeries. It only takes one surgery to go bad to change your life or to end it. That sounded really dramatic, but it's true. I count myself super lucky that nothing bad happened when it could have.
- If you don't have many clinical signs of it and have been fine in previous surgeries, are you sure you even have it?
To be frank: yes. Plain and simple is that blood doesn't lie and the amount of blood that has been tested and re-tested this summer says I have it. Plus, UCSF is one of the leading hemophilia centers in the world, so if they say I have this and this what I need to do then I have tendency to want to listen to them. If anyone is gonna know what's going on with me and how to treat it, it will be these people.
I feel armed with information now and I know how to best take care of myself and make sure all my bases are covered.
I hope to learn as much about this disorder as I can to make sure I am doing everything I can for myself and any future kiddos that may have it.
I am so relieved to have a game plan and to have actual information I can count on. I am at peace with this diagnosis and treatment plan.
Thank you guys for being here for me! The many emails, tweets, messages and texts I got of assurance and prayer were so appreciated! Thank you!!
I was so scared there for awhile, and it's great to say that I'm not scared anymore.