ILHS, oh boy - don't get me started on state health plans, medicaid, and drs. that give 'expiration dates'! Last week when my fiance was in the hospital (& calling that place a hospital is a stretch), his PCP (never listen to one of them when it comes to any kind of specialty, i.e. liver, kidney, heart, etc.) told us that he had a couple of days to maybe a week or 2 left if he didn't get a transplant! I won't go into the details on why that statement was wrong on SO many levels, but suffice it to say that he was negligent in saying it and he has NO WAY of knowing how much time he has left! The nurse from TGH (who hasn't even seen him yet) was furious that this PCP told him that. Those words from that quack devastated my fiance, dumped him into an immediate, deep depression, and scared the crapola out of him. Yes, he is feeling quite ill, but his tumor is only 3.5cm (& hasn't increased in size since 2/14, there is only 1 (no metastasis), and none of the relevant blood values are dangerously 'off'. Now, as for the medicaid that he is on - it is because of this that he is STILL waiting for his initial consult with Lifelink at TGH. There is NO doubt in my mind that if he had BCBS or some other 'real' insurance, he would already be at least halfway through the actual evaluation process and close to being listed.
I have a few suggestions. Do a TON of research on your own. Make sure you are getting your info from reputable sources - i.e. Johns Hopkins, Mayo Clinic, NIH (National Institute of Health), medical journals, etc. Write down or copy as much info as you can. Write down any and all questions as you go along. Get copies of all tests as he gets them (always keep a copy for yourself). Don't hesitate in questioning anything a doctor tells you. Don't be afraid to speak up! I am very new at this - it's only been a very short time since his diagnosis - but I had a very sick son and I have/had a lot of medical issues myself, and these are things I have learned along the way. And I'm also going to give you a piece of advice that I don't follow too well myself - please don't forget to take care of yourself!! If you get yourself sick or burn yourself out, you won't be any good to yourself or your hubby. Sorry, I didn't mean for this to be so long - I can get a bit carried away and start to ramble sometimes with these kinds of issues! But I hope that something in the short novel I just wrote helps you in some way!
p.s. One more thing - contact the American Cancer Society a.s.a.p.! They are a great source of information and resources. They have a form you can fill out - they may be able to help you with several things. 1-800-227-2345 and website is cancer.org - please contact them!
Post Edited (Splashdancer) : 3/18/2012 10:13:01 PM (GMT-6)