Re: what your hepatologist won't tell you
sorry it took me so long to get back here. one HUGE thing that YOU,the patient just has to start doing is advocating for yourself since no one is going to do this for us. when it comes to seeing any of the specialists or surgeons i have had to see, i always whip out my notebook, along with a pen and leave it sitting out in a spot that i go to often, like my kitchen counter? anytime,and even while lying in bed trying to sleep but you are thinking about things,that you think of a really good question that you just need an answer to, go immediately to this notebook and write it down. i had to do this since my memeory is crap so i would forget if i put it off. this really is the best way to come up with those really great questions that seem to drop out of our brains while we are actually in our docs office?
you just bring that notbook with you to every single appt and ask away. but DO make certain that you write down ALL answers he gives you, or bring someone with you who can do this for you. believe me,this has helped me ALOT over the years with all the major medical crappy stuff i have had to deal with with me and my son too.
one other thing you can actually do,just to really see what any doc is thinking about your conditions is obtain all your ongoing medical records from any doc you see. all it takes is signing a "release of information" and sending it back to that docs office and your records will just show up in he mail about a week or so after. all you do is call any docs office you want records from(any hospital stays are done this same way too)is call them,ask forthe med records dept and tell them you need your records. they will automatically send you out that release to sign. it is very very simple and easy to do and it gives you alot of info as well.
i have what looks like a freaking medical records room here with all my ongoing records from all my docs and my sons as well. but it gives me some control here and lets me know whether or not any given doc just 'gets' my problem/conditon like i would expect them to? trust me,this does help TONS in just seeing what your doc thinks, his 'impressions'? this also helps you to formulate good questions to ask at visits. you simply DO have the right to your own medical info.
if for some reason,you are having issues with your doc and don;t feel like he is doing all that he should be, ask him about it, or find another doc to oversee your medical care. we DO have some options here.
but this is basically how i have managed my own and my sons ongoing care and it worked pretty well so far(since 99 when my son went into 'suprise" liver failure). right now it would appear that you just NEED info that you are just not getting so you have to take the initiative here and start asking those questions of him.
hope this helped you out some. just start really advocating for yourself right now. it IS the very best way to get the best possible care from any doc for any reason. good luck and please let me know how things are going. marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.