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Thursday, November 8, 2012

von Willebrand's Disease

It has been a VERY long year for health issues in our family. Nothing overly major but enough little things that started to add up and finally lead to a diagnosis of von Willebrand's Disease. So, I am sure you're asking yourself- What exactly is vWD??? To answer the question, it is a bleeding disorder that is a cousin to hemophilia. The type we have is not nearly as serious as hemophilia- but some types of vWD can be that serious. If you want more info, this is a good explanation: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001571/

This diagnosis explains soooooo many things in our family.
-The fact that both my mom and I had hysterectomies in our early 30's
-Excessive bleeding that occurred with the birth of each of the kids (my own and my siblings)
-The bleeding gums that are always there when the dentists lectures about flossing and I am always saying- but I do floss!
-the easy bruising that makes us look like we beat each other when really I just hit the wall too hard
-The fact that both of my girls had a second surgery for their tonsils to stop bleeding that occurred
-The excess bleeding with the "girly stuff" that growing up I thought was "normal",  I was so wrong!
-The fact that I am considered a "bleeder" when I get shots, cut my finger or anything else minor

Our type of vWD will just take a bit more planning whenever there are medical things done that may cause bleeding. An example you say.... I cracked a tooth eating BBQ last week (fun, huh?!?) and needed a root canal to fix the crack because it went all the way to the root. Weeellll.... in order to prevent any possible complications with the vWD, I had to take a medication before the procedure and then I had to continue taking that med plus a second one for the following 3 days. I know ugh, right?!? Especially since the 1st med makes one feel as if they have a slight case of the achy flu. Another example- I am scheduled to have a pretty minor surgery next month that is an out patient thing with an easy recovery. Now, I'm going to have to stay overnight in the hospital, get a PICC line for meds, take IV von Willebrands factor before the surgery and then have home health come out to run more IV von Willebrands factor for the 4 days following the surgery. All I can say is that I am very thankful that we have reached the out of pocket max on our insurance for the year and everything will be completely covered.

The other thing that I have to be thankful for is that I have relatively healthy kids. All of the testing that has occurred was done at Primary Children's Hospital in the Hematology clinic. This is the same clinic where kids with Leukemia are treated and get their chemo because leukemia is a blood disorder. It was hard to have my kids in a clinic where there were sooo many sick kids and mine seemed perfectly fine with gorgeous heads of hair. I do think that it gave my kids a different view on their disease and an appreciation for how healthy they are and how easy their disease is to control.

The other thing that thing I have thought of numerous times through this year is the what a huge blessing changing jobs has been- not just because I love, love, love working with the moms and babies but because a fellow nurse told me about Dr. Lundell in Spanish Fork. He is truly an amazing doctor that has now helped my girls, me, my mom and other family members. He was also the first one to suggest that maybe we should look at von Willbrands as a possible cause for the issues that were going on. I never would have pursued the diagnosis without his help and prodding and I am very thankful for that. It's amazing how many little things the Lord has His hands in to make small changes that can have a huge impact on our lives. I am very grateful for that influence and the help it has given us. Here's to hoping that next year will have a lot less medical tests and issues.