So here I go yet again with one doctor seeming to have run into a wall that seems to fall on me. To explain better, my current hematologists (which by my last count was number 5, have to love insurance don’t we) was total confused about me and my test results that are all over the place. So after a year of confusing this hematologist, he does the right thing and tries to find someone more specialized in my unknown platelet issue.
So the magic doctor (not the hematologists who gave up, it was my new primary care doctor) found the big cheese in my state that is a specialist with platelet disorders. This was hampered by my having the “bad” insurance (which by the way was not my choice, I was forced to get his when I was finally officially declared disabled. Another long sad story.)
So insurance struck down several doctors and just common sense struck down a few others. My hematologist office was sort of expecting me to come up with tens of thousands of dollars out of my pocket to see someone in far off states at my cost (which being on disability and having a family of five kids, means I have no money.) I had to also remind them that a legally blind person cannot drive, so that adds on the expense of someone to transport me and such. So eventually my new primary care doctor, not my hematologist finds the local (within the same state) specialist. My new wife, last one bad news (another long bad story) takes time off of work on her birthday week to drive me to see.Yeah! Finally one battle won!
So I go to the big cheese specialist that my insurance can cover and am told to go onto Rituximab. This was after discussion and research on my bible of tests and the like from the hematologist. This is after yet another twist my insurance never authorized any blood work to be done by him or his facility! So I am back to my primary care doctor who does all the stuff (like put down diagnosis of what I am experiencing) so I can get the local hospital to do all these nifty tests and slides. Now really what idiot at the insurance company said its ok for me to see this hematologist, but NOT authorize any blood work?!?!?
So then a few weeks pass since my visit to the big cheese and he has the labs, so I was expecting a call from my local hematologists on what was next. So another few weeks pass, and I have to pester the hematologists to get this rituximab treatment started or at least a visit with him to fill him in or just to go over the prep and what not for the treatment. My primary care has all the labs already, but I finally get a call back from the hematologist telling me they don’t have the big cheeses chart notes. Really?! What in world is happening?
So since hematologist seem to always have the dual parasite of being oncologists, he is booked up, so I have to wait even longer to see him. This is of course after calling his office for weeks to get some sort of response, but only get the old “well you just went for a consult, we can’t schedule you” or the better yet “you went for just a consult and not orders.” So now that I am finally scheduled to see my hematologist after my insistence to get an appointment, I am really fired up. If hematologist has given up (or just confused with my labs and my weird responses from treatment) and tries to find someone above him (someone more into the platelet issue not just a generic hemo/onco doctor) and then finds one, why question his recommendations? I mean what the entire exercise was for, to just run up more insurance bills and have me call his office for the kicks? Yeah, I do not believe the "we don't have chart notes" excuse.
At this point my labs are coming back with greater markers for Lupus and now almost positively RA. Well that is a relief that maybe I have something they can deal with (yes at this point I welcome any disease that has a name and some idea on how to deal with it.) My quality of life is shot, and at this point I am ready for anything to just get some help. I was told today that I am not to go on the Plaquinal, and I have to wait to see the hematologist. My guess is that he is afraid that I may be the person who reacts negatively to quinine based medications, at this point I have no idea if I am or not.
On the scale for how many symptoms/effects of possible Lupus I score a firm 6 disorders or symptoms. Of course the blood testing is still pending, but at this point I place so little trust in these tests. I mean there is really no definitive test as far as my doctors have told me that say you are or are not, which unsurprisingly is so much like ITP.
So with even more tests pending (I am becoming drained from all these damn tests), is this common to have your doctors having such battles with what to treat you with? I played the wait and see approach for over 30 years now, with the brief bouts of we must work on this and then drop it again doctor vs. insurance battles (that was my last trip here to this board with surprising the same results.)
At this point I am just so frustrated that my local hematologist. It seems like either he or his office is so scared or just unsure of what to do. I mean if your doctor says it is above his or her understanding and they refer you out, should they listen to the person or persons they send you out to? What magic key or phrase or test must be given for someone to finally say let’s do this next?
Has anyone just had enough and told their doctors to just suck it up and go for it? Rituximab is not an easy choice, but neither is suffering with other disorders or issues or whatever that I am being told can be helped if they get my ITP back in a safe zone? Safe by the way is totally variable and I have been told by to many hematologists at this point to give little if no confidence in any counts. I bleed horribly with counts in the high 70s and now just leak constantly in the 50s from everywhere (which is another story of specialist playing the blame ITP not my specialty issue.). Sorry for the rantyness of this post, but what is everyone else’s experiences or suggestions on what to do next? I can’t force anyone to do anything, but isn’t about time that someone just does something or at least let another doctor try something. Suffering in frustrated silence does not work anymore.
AzThumper