Von Willebrand's Treatment

Today we spent our afternoon at the hematology clinic, getting more blood work done and trying out a medication. It was a long but very informative visit, with a lot of information given about how the medication works and when to (and not to) use it.

We started with a blood draw, for a baseline test of the Von Willebrand protein levels in RJ's bloodstream. This was followed by an administered dose of the medication, then visits with the nurse, doctor, tech, and social worker to while away the hour before the follow-up blood draw to check post-dosing levels for effectiveness of the medication.

We learned that he will not have to take any medication on a regular basis. What they have given him is Stimate (name brand), which is a nasal spray medication to increase his Von Willebrand protein levels in his blood to help with clotting in case of an injury or before a minor procedure. The proteins are made on the inner walls of the blood vessels, and the medication forces the blood vessels to release the proteins quickly to increase the levels in the bloodstream temporarily. The good news is that the likelihood of RJ needing to use the medication is slim in his day-to-day life. Mostly we just need to have it for an injury or if he has to get his wisdom teeth pulled. The other good news is that he doesn't need to be seen by them for 2 years, so we are doctor-free for the moment.

If he's ever in a severe accident or has major surgery he can't use this medication for those situations. There's an extremely limited fluid restriction for the 12 hours following administration, making it inappropriate for those situations. 

The changes to his life are really minor, all things considered. He will be getting a medical alert necklace (he had a choice between a necklace or a bracelet) that he will need to wear all the time. If he sustains an injury he needs to call the doctor before taking the medication (just to be sure he needs to), and they don't recommend contact sports, and he cannot take ibuprofen, aspirin, or anything containing those.  Aside from that, nothing else has changed. We all get new phone numbers in our phones, he gets a necklace and something to toss in the fridge, and we all get to be thankful that everything has turned out so well, when it could have ended so very differently.