the NIH tells you they can't help you or have any studies or protocols for you because that's been my experience which seems so very different from everyone else's. And there's my question in a nutshell: why is my experience so different and the NIH so incredibly UNhelpful in my vhl journey??
I've got to say that my interraction with the NIH has been extremely negative and frustrating. I know many of you have had a lot of help from them and I'm happy you had a positive and helpful experience but it's been nothing but an empty box of hope for me.
When I was first diagnosed back in 2001 I can't remember who exactly but it was someone from the VHLFA (vhl family alliance, a great and tremendous resource with very nice and generous folks) suggested I call the NIH and see if there was any protocol or study that they could use me for. I've always had the attitude that if by poking me helps doctors and researchers find help/medications/better procedures for others then go for it. I can't tell you how many interns have interviewed me! Anyway...when I called NIH I was told there was nothing they could do for me; there were no open protocols or research projects and on top of that since I had insurance (and I still have the same health insurance, thank God!) there was nothing they could do anyway.
So flash forward to about a year ago. All along I've been having my "stuff" (aka Problem Areas like the cysts on my pancreas and hemangioblastoma/tumor on my spine) monitored every 6 months or year or whenever something doesn't seem right. A year ago my urologist strongly suggested I contact Dr.Linehan or his nurse/office person/research intern/aide/helper person b/c I have this wee little spot on the bottom of "Lefty" that's "of concern" b/c it's kinda small, but it's just not right. I love my urologist. I've been blessed with a great team of doc's (except for one really bad primary care doc who thought I was stung out on pain meds) and so when he came back and told me to contact Dr. Linehan and that he was like a major player/big deal kind of person at NIH that may be able to help me I set aside my previous experience (also b/c many of you all said that whole insurance thing is not only weird but it's wrong) and contacted them again. This time I sent them films and reports and my info was "reviewed" in a "meeting of the minds" kind of thing (sorry for the elementary language, but my lexicon is chuck full of words like "lexicon" but can't recall the term used for when doc's get together to review sick people's reports and stuff!). 2 months passed. No one from NIH ever called me back; I always had to initiate the communication and had to NAG them to get my films back (and they were on a cd..not even those big ol'sheets of x-ray films that weigh 9 tons!). After those 2 months and the nagging I was told pretty much the same thing as 2001: Nope. Nothing here for you. At least they didn't tell me having insurance procluded me from any studies or anything.
I know my tone here is very sarcastic and negative but I'm done with NIH. I've even got family in MD and so even though it's just a wee little minor thing, but honestly, I could stay with my in-laws for as long as they would need me to and it's be no problem at all. I just don't get it. I mean I'm not an idiot - I've got a master's degree, I know how research hospitals go and I'm fairly familiar with the NIH (my best friend of almost 30 yrs is a nurse, and was a nurse in the miliitary for 3 year) and how it's not like a typical hospital. I told my urologist what happened and his response was kind of like, "Hm. Oh. Well, I guess there's nothing there then. Well, okay here's what your options here are...." and so on we went.
So, my short question here is: What am I missing about this whole NIH thing that so many of you all out there either have done or have symptomatically that I don't? I feel like I'm missing something; like I got an incomplete application for a job or something. I'm not saying I'm any sicker or better or whatever than anyone else...I'm just a little befuddled at the responses I've had from the NIH b/c everyone else I've either talked to inperson, talked to via email here or on the vhlfa website or read responses from regarding their NIH experiences has been so very very different. What am I missing or doing wrong?
And I mean absolutely no disrespect for Dr.Linehan, the NIH, and any and all of the doc's and researchers that are at the NIH. I kinow Dr. Linehan is a great doc, I've read and heard about his work, and I respect him and thank him for it. I'm also not saying I'm any sicker, better, worse, smarter, in more need, or what have you than anyone else with vhl. I'm just saying I must be missing something b/c my NIH experience has just been a big giant blimp of empty hope.