And now, this is Dave's post. (To learn about basic information regarding VHL see my previous post.):
What’s it like having VHL?
What’s it like having VHL?
This is probably the question that most of you are asking right now. Well…there’s no one answer. I have been exceedingly blessed with my VHL, I have had two surgeries (both to remove a pheochromocytoma), I currently have a small mass in my left adrenal that has remained stable, and numerous micro-lesions (very, very, very tiny tumors) in my right kidney. Others with the disease have had double digit eye surgeries by the time they are 10. Really, as long as I am spared tumors in my central nervous system, I will consider myself blessed. There are lots of ways having VHL has impacted my life. I take trips to the National Institutes of Health (NIH) on a regular basis, I can’t do Aikido anymore, I’ve known an internationally renowned physician/scientist since I was 11, and, it has always meant that I could pass it on to a child. The last has had the greatest impact on my life, and will continue to do so.
There’s a lot that I’m worried about. Different people manifest the disease in different ways. While our daughter has my exact mutation, it doesn’t necessarily mean that she will manifest the disease in the same way, my mother and I have very different medical histories, and no one is exactly sure why. I am terrified of hearing “I’m sorry, but your daughter has a tumor in her cerebellum.” On a more selfish note, I worry that she will blame me. Valerie and I went ahead with the knowledge that I had this disease and that there was a 50-50 chance that it could affect our daughter. How will she react to hearing, “yeah, we knew there was a 50-50 chance you could get it, but we went ahead anyway.” On the other hand, I know that I’m very glad to be alive, and have never (at least, not that I can remember) blamed my parents for “giving” me this disease.
So, what does the future look like? In many ways, I don’t know, all we can do is take it one day at a time and hope for the best, but how is that any different from what everyone else in the world does? We’ll let the NIH know, and hopefully she can be included in the VHL study. I’ll do my best to encourage her to be curious about what is going on inside herself. I’ve always been extremely thankful that my parents encouraged me to be curious and interested in VHL, rather than to feel helpless and subjugated to it. A desire to know more about something is very powerful, and being curious has turned VHL from something terrifying to something that honestly excites me. Most importantly, I will love her. Valerie and I will both be there for her through everything. We’ll hold her hand when she needs to have an IV put in. We’ll be sitting just outside when she has her first MRI. I’ll be right next to her drinking my awful CT contrast while she is drinking hers. I wish more than anything that she never has to experience any of this, and I feel beyond terrible that I have done this to our daughter, but with no other choice, we’ll just have to make the best of it. In the end, I’ve always thought that VHL has had a positive impact on my life, I just didn’t want to pass it on.
The bottom line? We love our daughter and can't wait to see what the future holds, with or without VHL.