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Liver & Pancreas Disorders Message Board


Liver & Pancreas Disorders Board Index


If only the idiot docs out there,espescially the "specialists" really knew what they put their patients and the familys thru,honestly.i have had to deal with more clueless idiot uncaring docs over the past seven years since my son got sick along with him also going thru a really bad year with a over the top response to SSRIs which totally changed his personality and then once we got him back on track,his "friend' decides to take off with my son still sitting on the trunk of his car,which resulted in a brain bleed and a double skull fracture and a two week long coma.he came out of that pretty well,considering.and this was just HIS stuff.i have been thru five surgeries,had a glob of blood vessels that were intermittantly bleeding removed from the inside of my spinal cord three years ago along with living now on disability because of the severe types of spinal cord damage that occured along with all the secondary SCI syndromes,two of which are neuro pain syndromes.believe me,i have had to deal with wayyy more "specialists over the years than i ever cared to.

The most important and useful thing that I can tell you right now,is"the squeeky wheel gets the grease"keep pushing til you get what you need done.if you have to go to the legislative level(your representitive) if certain things that may occur actually do,then by all means,do it.i did.you have to approach every doc,gage their additiude and figure out what buttons to push with them in order to get your needs met.

I have met some of the most caring and wonderful docs out there(luckily,everyone who took care of my son during the pre and post Tx were wonderful,espesically the Tx surgeon)but I have also run across some of the most arrogant egotistical a holes you can possibly imagine.those were the ones we either dropped completely,or if that was not an option(like in your position)i learned to work "around them"by going over their heads when needed and doing things a different way.someone,every doc,does have a superior who they have to answer to ya know??hint hint.if they have privledges at any hosp,they answer to someone,and sometimes,you have to go this route too.after your hubbys Tx,you do not have to stay with this doc,so who the heck really cares what you have to do here in order to get a few minutes of his precious time,ya know?but calling those agencys i mentioned really would be the best way to find out how to go about doing things with this unattainable doc.

that idea you had about getting your friend from yale into this,i say go for it,really,what have you got to lose by doing that?its worth a try and may make Dr a hole wake up and smell the coffee.

You know what Liz,you are much much stronger than you ever think you are,really.when my son got sick,it was me who shouldered the majoity of crap as my hubby was mostly in denial and living in the "ignore it and it will go away 'mode?at least at first,before our son had to go back into the hosp on may 19 of 2000 and didn't come out til july 1,2000.he got his new life saving liver on june 7.what a trippy nightmare this was.i am sure you know what I mean.i found out that thru all of this,that I was a very strong person,something i never would have thought of myself before my child got sick.people wold ask me how do you get thru something like this,and my reply was I don't know.like you,you just do it and get thru it cuz you HAVE to.its that simple,of course the process isn't simple by any means,but you know what I am referring to dont you?if not you,then who?

i too am and was suffering with some pretty heavy depression.the best thing i did for myself was to totally and completely just get away,totally.take some time out everyday to really really involve yourself in anything that you can do that will take your mind off of your hubby and your issues that you are currently dealing with,preferrably,something physical.honestly this saved my butt from going over the edge completely.i would go out and just totally lose myself in my garden,go running(not walking cuz that gives you brain too much time to dwell,ya know what i mean,but if that works for you,then do that)but I was also on our local FD and despite the fact that i was dealing with all of my sons crap and my chief told me to take a leave for the time being,i practically begged him to let me stay on for this time and be able to respond to calls.i HAD to do that,i just had to or i would have lost my mind as the alternative,when we were not at the hosp,was sit and dwell on things.when my pager went off I was transported to a place where I was totally thinking about someone else or working that structure fire or whatever,but I was totally into "that' moment and not sitting there feeling sorry for myself and thinking why us.ya know?

considering what you have been going thru it is totally natural that you would be feeling the way you are,totally.you are dealing with ALOT and it appears that it is all on your shoulders,everything,and thats alot of ongoing stress for you to take on,plus the frustration this doc is inflicting on you.thats just appalling really.you need to do whatever it takes right now,to just get those needs metwhatever you have to do,just do it.

have that friend call ,call those numbers do whatever it takes.get angry and use that to fuel your flame here.thats when I would get the most productive,when I got to the point where I got really angry,thats when the doc better look out cuz I had had it with a certain persons additude and basically told him off and mentioned all that I was dealing with and how dare he treat me like I didn;t matter and that I didn't deserve a certain level of respect,and also reminded him that hey,you are working for us not the other way around and I do have certain rights just because of that fact ya know?wow did he freak.i kinda did too,but he had just gotten me sooo incredibly pissed off with an additude that quite frankly,i was sooo tired of listening to that that particular day,he just got what he deserved,and man did that feel good.but I got my needs met.suprise.

i am hoping that you are at the very least ehre seeing a therepist to vent off all of the crap that you are dealing with/or at the very least,a good friend who is listening to you when you need that?don't be afraid to ask for help if you need it,and when someone offers 'is there anything i can do"? take them up on it.let them DO for you.for most people,they like doing this,they know that they are really helping someone out who really does need it.most people like to feel that they are at least helping you out in some small way,you know what I mean?so I started taking people up on their offers.and it helped alot.things that i really did not need to do myself,I would let someone else take care of,like grocery shopping or going to the bank,or any of those types of daily living things that you can let someone else take care of.it really does lessen your burden.this just helps you mentally too,not having to worry about getting the little things done and you can concentrate on the bigger picture here.as far as your hubbys insomnia,some of that could be just the liver crap itself,this does happen with patients who are in some level of liver failure.it happened with my son too.eventually his doc just Rxed him something to help him sleep.it was wonderful to see him actually SLEEPING without waking up constantly like wide awake.i cannot even count the number of nights that we went thru this.your hubbyis probably also depressed and that doesn't help the sleepingthing either.depression alone can cause insomnia.but this does need to be treated so your hubby can just sleep a full night and not keep thinking about all that can happen to him,ya know?he should also be seing a therepist to share all his fears with.while having you is nice,you really don't need to have all of his stuff dumped on top of what you are already dealing with,i know it sounds rather cruel,but for both of your guys sanity,it really would be the best way for both of you right now,if this is possible,try it and see how it goes.just a suggestion.

I hope you can make some headway with this doc,honestly,all he has to do is answer some flippin questions,unbelievable what that can do to you when you cannot get something sooo freakin simple just done.i would definitelt have that freind do whatever they can possibley do for you at this point.pull out all the stops and do whatever you have to do just to get those needs met,you do deserve to be treated with a bit more respect than you are currently getting now.please let me know how things are going,K? hang in there,it will get better and you WILL get thru this still intact,i promise.If you need to vent,i am always here as I don't currently have a life right now,lol.thats another thing,don't lose your sense of humor.my son,has the most wonderful sense of humor,and honestly,some days thats all we had to get us all thru this.his humor.even when he was really sick,he kept up with the jokes,really amazing,my boy with 9 lives.good luck,marcia





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