One thing I’ll probably talk a lot about in this blog is Nate’s health. He has a genetic condition called Von Hippel Lindau (VHL) that causes a lot of difficult health issues. The short explanation of VHL is this: we all have several genes that protect us against tumors. For Nate and others with VHL, a particular one of those genes is mutated, leaving the parts of the body the gene should protect vulnerable. Off the top of my head, VHL tumors affect the brain, spine, kidneys, pancreas, eyes, adrenal glands and, recently discovered, ears. Most of the tumors are benign, although they can still cause a number of problems. The kidney and pancreas tumors are malignant and can therefore be very dangerous. However, the brain tumors cause the largest number of mortalities due simply to the complexity and importance of that organ.
To date, Nate has had eye, adrenal, kidney, and brain tumors. We’re still dealing with all but the adrenal tumor which was removed surgically in 1997. His eye tumors have left him legally blind in his right eye and are currently wreaking havoc in his left eye. He just had surgery (Jan 2007) to try to save the vision in that eye, and so far things look good. We’re simply keeping an eye on his kidney and brain tumors because typical protocol is to only operate on them if they reach a certain size (3 cm for the kidneys – research shows they never metasticize before that) or if they start causing problems. This is weird to most people, and it was very difficult for me at first to process the fact that my husband was walking around with malignant tumors in him and no one was doing anything about it, but eventually it just comes to seem normal.
So when I start talking scary medical stuff, now you’ll know what I am referring to. If you’d like to know more about VHL or make a donation to support VHL research, please visit the VHL Family Alliance.
