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Old 07-11-2006, 05:02 PM   #1
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Angry Liver transplant NIGHTMARE

My problem is so bizarre people don't usually even know how to answer it so I don't expect anything from anyone , but I need to vent.
7 months ago my husband was placed on a list to recieve a liver transplant. He has liver cancer, cirrhosis, & HepC. He is not currently very noticeably sick, but will become so rapidly when the cancer reaches larger proportions. At the time of his listing we were "promised" he wouldn't have to wait longer than 3 months. Of course no one could make a promise like that. He had his cancer reimaged in May and luckily it has not grown, although his cirrhosis is worsening. All along and throughout this nightmare, we have been stuck to within cell phone range (surprisingly small area) and we sleep with the phone hanging from the blinds above our bed. The stress is unimaginable....on us and our kids.
The biggest headache, tho, is the hospital and the doctors. He was seen, once, last January by the surgeon who may or may not be the one who does the actual surgery. We have had no follow up care. He has never met with the after-care GI doc (Although we were told that was paramount to his care, as this guy will care for him for the rest of his life and manage his meds, etc.) 7 months!!! Finally, I blew a gasket and told my husband that all I wanted for my birthday was for him to get an appointment with this doctor and have an exam and talk to him and have all his questions answered. He reluctantly agreed he would do so. (My hubby does not like to rock the boat!!!!!!) So he calls to get an appt (and mind you, he is the highest in his blood group for a transplant, the HIGHEST, so hence, the sickest and what does the scheduling office give him for an appointment? AUGUST 12th!! A month away!!! For a dying man!!!!! What??? He just called me and told me and I just fell to pieces. I said, "I give up--we're leaving and going elsewhere, they obviously do not care about you here." He's like, "Oh, stop fussing, it'll be ok"....this while I am sobbing and screaming and throwing a fit. He purposely waited until after office hours so I couldn't call the hospital or this doc's office and try to get him in earlier. I don't know who I am maddest at, him or the doc.

I don't know what to do. My DIL just called me from New Haven, she is an intern at Yale and she said she'd talked to the transplant team there who said they'd love for him to come there. Maybe that's an option....we'll be out a tremendous amount more money and time and we'll essentially have to move to West Haven where she and my son live for who knows how long, but if it saves my husband's life--- I don't know, right now I am spitting bullets I am so angry. We do have one other transplant hospital in our area, maybe we'll try them first..... seriously, I did not know one little person could get so angry or so depressed. I have never been this angry in my life!!

 
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Old 07-11-2006, 08:49 PM   #2
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Re: Liver transplant NIGHTMARE

First of all I hate to hear of all the things youre family are going though, it must be rough.I can definately see why you are md and frustrated at docs, even hubby, I would be too. I dont know how we would work things out if my son ever has to have a transplant(he has AIH and severe fibrosis and is 10 yrs old)In our case we live 3 to 4 hours away from the closest transplnt hospital.I dont know how they handle things like that when you live furthur away from the hospital.I would definately check around and see what can be done about going elsewhere... maybe to one of the major transplantation hospitals.I would be extremely mad if my sons doc acted as if he didnt have time for him or seemed to shun him to the side.... I would Im sure go off lol. I hope you can get something done about this. I wish you and your family the best of luck!!!! mfife31

 
Old 07-12-2006, 09:55 AM   #3
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Re: Liver transplant NIGHTMARE

Thanks for the reply--
Actually, we DO live very close to one of the major transplantation hospitals--which is ironic, really. Actually, one other has just recently started doing liver transplants and we are seriously thinking about going there instead. I have been crying on and off all morning--called the drs office and was told "nothing we can do--dr does not have a single opening until November in office and actually it's August 16th in clinic" Drs keep a good staff of people around them to keep their patioents away from them--and they do a good job at it. Ihavethis sick feeling my husband is going to die before he even gets seen by this doc, much less gets a transplant. My sonis an attorney and already has plans to sue everyone he can.....i don't want that, I want a healthy husband.

 
Old 07-12-2006, 08:34 PM   #4
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Re: Liver transplant NIGHTMARE

I believe I would check and see what could be done about getting him in at the other hospital. I dont blame you for being concerned and wanting him to be seen asap.Dont give up!!!!! Mfife31

 
Old 07-13-2006, 07:24 AM   #5
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Re: Liver transplant NIGHTMARE

hi Liz,so sorry for what you are having to go thru.my son recieved a liver transplant seven years ago and than god we atill have him around to yell at to clean his room.so I do know some of the frustration you are feeling here.

first of all,desptie what you were told about your hubby being the highest in his blood group on the 'list',you need to find out just what his actual status really is.i don't know if you are aware of the "staus' listings?the actual numbers,in how they list people using a set of criteria?but i know when my son was admitted to the hosp with some complications from his ongoing liver failure,he was not actually even on the list yet despite the fact that he had been Dxed with being down to only having 20% of his actual liver function left only six months prior.when they saw that he actually had pancreatitis alnog with some sort of really nasty infection going on inside of the bile ducts,it was only then that they actually placed him,but it was all up to the transplant commitee.but at that time,he was at status 3.it was not til he was actually at like deaths door(literally)that he was placed at the highest staus,'1" and went from not just regional but national on the list that he actually recived his transplant and this was from a child that had dies three states away.they flew it to the hosp that morning.

now I am not sure just what you are being told liz,if your husband is not in the hosp and does not 'look sick' i am wondering just what his TRUE status actually is.i don't know if they are actually giving you the whole story,you know what I mean?you need to find out the actual NUMBER on his listing to really know for sure just whther or not he is really at the top.

ya see the thing is,if there is actually someone with your hubbys blood group who is actually in the hosp and is really literally dying right there(i know your hubby is unfortunetly in this state as well)they would most likely actually place the liver with the that person despite what you were actually told.i really really dont want to burst your bubble here or cause you any more grief than you are already dealing with,but you really DO NEED to find out just what his TRUE number staus is.if he is not at status one,he is not the highest on the list right now,or at least that is my understanding of what we were told aboput how this process actually works.

you just need to find out this info.if you are having any problems at all with this,i would contact UNOS?they are the governing entity for co ordinating any transplants that are done in this country.i woukld also find out who is in charge of co ordinating transplants in your particular area.i know where we live the place is called "lifesource".these people are the ones who really would be able to best answer ANY questions that you may have regarding the status and what your hubbys true placement is on the list.if you ask anyone at the transplant hosptial who is afflitiated in any way with transplants you would be able to get the actual name of the governing entity for your particular region.they really would be the most helpful for what you need right now and be able to wade threw any possible problems you are currently having with any transplant issues.they govern what the docs do and don't do when it comes to actual transplants so these people have some leverage when it comes to these docs and espescially how you are being treated.there is no excuse for you to have to suffer even more than you guys already are because of some a hole docs.

you should also have met with someone from the transplant co ordinators office,these are the people who would be in charge of keeping his meds straight and also takiing care of any problems that come up post transplant.we really don't actually see any of my sons docs much anymore as everything is handled thru the transplnt center and the specific co ordinator for my sons case.she handles everything.when we have questions about any med changes or if something is okay to take along with his actual anti rejection meds,its the co ordinator we call,not his docs.these co ordinators are really extensively educated on everything having to do with transplant related issues and are all at the very least RNs.i am really amazed at the amount of knowledge my sons co ordinator has about like everything.so tho your hubby will be seeing a GI doc for anything actually medical, they are not as big of a part of the after care process as you may think.my sons issues are normally handled thru his primary doc unless there is some really huge issue that would possibly come up with the actual transplant itself,which so far(knockonwood)has not actually happened now in over six years.he has had the new liver for seven years now.

i would most definitely seek out help from the two places I mentioned to you.these people would really be your biggest allies right now in dealing with the idiot docs you seem to actualy have,and I DO feel for ya there,believe me.but you need to find out exactly what is really happeneing here,really.just for your own peace of mind if nothing else.I dont know if you are aware of this or not,but you can be listed at more than one hospital.at least I know you can here in MN anyway.

just get in touch with you regional agency or UNOS.your local one would probably be the best for what you need right now tho.some back up.just call them and say PLEASE help me,i am sure they will be more than happy to help you out,and at least give you some answers that you are not getting from your docs.

please keep us all posted on how things are going,and i sincerely hope that your hubbys transplant will take place asap.good luck liz,marcia

 
Old 07-13-2006, 08:41 AM   #6
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Re: Liver transplant NIGHTMARE

Thanks Marcia
Yes we do know my husbands status and his score--they do things a little differently now than 7 years ago. His MELD score is a 25, he IS the highest score in his blood group (or any other, for that matter) in our state. You do not have to reach status 1 in order to be transplanted. And, oddly enough, it isn't the DOCTORS who are giving us any grief it is the COODINATORS office who will NOT schedule any time with the doctors. My husband has never met his hepatologist, just the surgeon, and that was 6 months ago. As he has cancer, he does not require constant follow up work, so he is never seen, except for every 90 days his cancer is reimaged and they check his alpha-feta protein levels. It's his hepatologist he wants to meet with...he has some questions and a few concerns. Our family doc won't treat him as she does not feel comfortable dealing with him as he is so sick and has cancer (understandably so!) We did find out that he cannot be listed in 2 transplant centers in the same state (this is an insurance rule for us) so we have to decide what to do. He cannot get past the coordinator to get an appt. with the dr for even 10 minutes until Aug. 16th. We have tried everything we can think of and she won't budge. I know that it's her job to keep things running smoothly for the docs, but, honestly, the man doesn't have 10 minutes between now and August 16th to meet my husband and answer three or four questions???? She did tell my hubby he's really "next" on the list, but its' been an uncommonly slow time for transplants(and I can't blame anyone for that, of course) but I also don't know if I should believe her. The last one was June 9th. The average at this hospital is one a week. This year they've done only one every two-three weeks.
Well, I am glad for your son--I do like to hear success stories, makesme believe that sometimes things work out!

 
Old 07-14-2006, 06:29 AM   #7
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Re: Liver transplant NIGHTMARE

wow liz,thats really incredible.is this guy like one of the 'untouchables" here or what?and the co ordinators,now,they are supposed to be there to actually HELP the recipient navagate thru the mess not make it worse.unfortunetly it sounds like you are in one of the "slower"areas for Tx and that can complicate things.but you would think since things are that slow at that hosp,the hep would have a bit MORE time on his hands???Is it possible to see another GI doc that is affiliated with that hosp?at least to possibly answer some of your questions?would it be even a possibility for a live donor transplant or does he definitely need a cadaver liver.we were planning to have my hubby donate and he had been run thru all the tests and we had everything set and scheduled but unfortunetely,my sons condition just bottomed out and then they discovered he had a much worse(couldn't believe things could get any worse but they did)condition than his original Dx and would need more liver than my hubby could give so the live donor was out a he had to have a cadaver liver.that really sucked and also caused my depression to really bottom out as well.believe me,I know at least some of how you feel here liz and know just how much this all really sucks.

i know you don't have to actually be status one to be transplanted but what happens,is if there is someone who IS at status one,they could over ride your hubby,thats all I ment by that,see when you obtain that status,like with my son,the commitee has to feel that if this person does not get the new organ within the next 72 hours,they will most likely die.thats what staus one amounts to.believe me,my son WAS unfortunetly at that point.it was a really horrible time and we really did think we were going to lose him.he was lying in a bed in the PICU and quite honestly already looked as tho he HAD actually already passed.it really was that bad.my husband and i had also discussed what we were going to do with his organs when and if he should not be able to get that new liver in time.the whole situation was rather morbid,but had to be done.I really DO feel for you and all that you are having to deal with and go thru with this ongoing nightmare you are currently living in.

have you called the local governing agency in your area that co ordinates the actual transplants?this is NOT the same place as the co ordinators office,these are two seperate places.the agency i am referring to actually totally governs the entire transplants co ordination for your entire region not just that hosp transplant center.do you know what I mean?this should be reported to them.you DO have a right to have a few simple questions answered and not have to actually wait til some appt way down the road.thats just really sick to do to peple in your situation.

you can also contact someone at UNOS(united network for organ sharing?) they ARE the ones who co ordinate the entire transplant program in the US.they might be able to also help you.i am not sure just what your questions are,but they or the regional co ordinators may be able to help with the actual answers or at least helpyou to get thru to this unreachable doc.

at least these are two possible options for you to try.If you can either get your questions answered thru them or they can advocate FOR YOU,this could really really help you to at least see that doc for those few precious minutes.this would definitely be going over the heads of this co ordinator at the transplant center you are currently dealing with and if they recieve a call from the regional governing agency,well it may be enough to motivate this 'gatekeeper" to get you what you need,time with that doc to answer some simple questions.unfortunetly for you and your hubby,these would be about your only options at this point.

honestly,the thought of actually going to this docs office and sitting there refusing to actually leave til you are allowed to actually speak with him really comes to mind(last resort only).just try calling the agencys i mentioned,it couldn't actually hurt to at least give these options a try,i mean what have you got to lose at this point?i really DO wish I could offer you much more help with your situation,I really do.hopefully if you make some calls,you can find someone who can at least help advocate for you and get somewhere with this gatekeeper from hell.

i wish you lots of luck liz,hang in there,things WILL eventually work out.just keep thinking the positve thoughts and try not to dwell on the crappy stuff.i know that sounds impossible,but try.my heart really does go out to you.i will say a prayer for you and your husband with hopes of the transplant happening asap.Marcia

 
Old 07-14-2006, 11:34 AM   #8
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Re: Liver transplant NIGHTMARE

Marcia,
Thanks so much for the words of encouragement and advice. I had not thought to call either the UNOS local rep or the other one you mentioned.(I'll have to refer back to your post)
I do understand the idea that a status 1 patient will override my husband--that has already happened twice. VERY frustrating--but we just say a little prayer that theywill receive the liver and recover fully and go on. Nothing else to do.
My DIL at Yale is pretty angry about the whole situation and may likely be calling the coordinator's office with a "Hi I'm Dr So and So from Yale Medical and I'd like to speak with Dr So and So about his patient....very professional and all, and when our hepatologist realizes he's never MET my hubby he might feel a little stupid to realize he's 7 months behind the program. Esp, if she says that my hubby has been talking to her about transferring to Yale for the Tx. It doesn't hurt to have advocates in other places.
And to answer your question, yes, my husband needs a cadaver liver, He has Hep C, Cirrhosis and Cancer, so a partial donation won't begin to do it. also he's a big guy (6'5" and 270 lbs, so, really he can handle any size).....

As for my depression--I've had it for many years andit has been well under control, but this experience has rocked me off my feet. I'm on twice as much AD's as before, an antianxiety med, sleeping pills, pain pills, migraine meds, meds to prevent the constant migraines, acid reflux meds---before this I was taking anti depressants and that was it. And it's my HUSBAND who's sick. Go figure. We are arguing constantly and I honestly don't know if our marriage will survive this. He' s seems happy to sit back as the quiet, patient, brave, cancer sufferer and paints me as the hysterical screamer and basket case. But at night, when he go to bed, he buries his head on my shoulder and cries and tells me how terrifed he is and how he can't take another day of this, etc. keeps me up all night be'cuz he has insomia from anxiety, but doesn't let on to anyone else that he's struggling. Just tells everyone, "Oh I'm fine, but my wife is falling to pieces". So everyone praises him for being so damn brave and chastises me for not "holding it together for his sake".
"sigh" well---onward and onward...not much else to do. I will try to call those people you mentioned. It might get him an earlier appt and even that would be of some benefit. I he could just sleep at night and not have such terrible heartburn from the stress!! If only the dr wold answer three or four questrions and allay a tiny bit of the stress!!

 
Old 07-15-2006, 06:05 AM   #9
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Re: Liver transplant NIGHTMARE

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 ****** 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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Old 07-17-2006, 09:42 AM   #10
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Re: Liver transplant NIGHTMARE

Wow, Marcia,you can really vent! If I could do that I think I wold have gotten a lot more out of therapy a few years ago-all kidding aside, I do appreciate your comments.
Yep, it is without question, frustrating that we can't even get near the hepatologist for a pre-transplant visit. It was, of course, something that should have taken place back in January, but didn't. My hubby had a terrbile night, hewas having stabbing pains in his side and back and couldn't sleep well, (I know because each time he moved he'd let out this loud groan of pain) I cannot bellieve that the dr wouldn't precribe something for that pain, or for sleep, but he hasn't met him so he won't. Vicious catch-22 cycle. Actually, after talking to our kids over the weekend he decided to call his surgeon--he could maybe help him either see the hepatologist or just schedule a visit. It's hard to believe that a person with a Meld score of 25 with HCV and advanced cirrhosis and CANCER hasn't sen a dr since Jan. 3rd, isn't it? And yet, he hasn't. And they don't seem to want to see him either, even when he has problems....I did find out, however, that he is, in fact, # 1 in his blood group, O+ in our state.....so unless a status 1 appears (which happened on June 9th, our daughter's wedding day!!!!!) or one of the other 3 men in the 25+ group gets a lot sicker, he's next to go. But he's been #1 for along time now, and could remain so indefinitely.
Actually, I am calmer today, I think I just am worn out with worry and stress. I just wanted a dr to look him over and give him some meds for the pain and the sleeplessness so I could maybe sleep better too. I've decided to just go with the flow--I can't make them see him--but I can change my attitude, which seems to be my only option at this point.

Thanks for your insight.

 
Old 07-18-2006, 04:51 AM   #11
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Re: Liver transplant NIGHTMARE

sounds like a great additude to take at this point.regarding your hubbys pain?he has a RIGHT to have that treated.they cannot deny him pain control,espescially if he is a flippin cancer patient.that IS appalling.your hubby must have a primary or oncologist or some other doc that can take care of this for him??this really IS sick.he does deserve pain control.

there are many options for pain that can be safely taken by people in liver failure that do not actually contain any tylenol,just pure opiates.I think in his case trying roxicodone or even better oxycontin would work wonders for him.if you could possibly get him into see a pain management clinic asap(because of his condition,they may not actually make him wait the usual'forever" that it takes to see any new doc,as this IS a very dire situation)this really would be the best possible way to have his pain addressed properly.all it takes is a referral from his primary doc.

i now suffer with some of the most godawful pain syndromes known to man just from the heavy spinal cord damage I suffered,believe me,I know pain,and some of the best ways to try and treat it.the pain clinic would really be your best bet.like i said,since your hubbys case is rather dire,they may get him in immediately,or if nothing else,make a BIG plea to his primary and ask him to please alleviate my husbands suffering.once a patient tells a doc about their pain,by law,it HAS to be appropriately treated.they cannot just let a patient(espescially one in your hubbys situation)leave their office without appropriately addressing and treating their suffering.this law went into effect a couple years ago.it is a federal one by the way not local or by state.he does deserve appropriate pain control or I would be also making a call to the AMA.

just because you have to wait to see the "untouchable" doc,does NOT mean you have to wait to have the pain treated,thats just sick really.I do think your hubby has suffered wayyy more than he should have to already just by the crappy treatment he has been getting.you need to demand that they treat his pain.and do not let them blow you off by telling you they cannot because of his liver problem.there are ways around that and every doc is aware of that.

If your hubbys pain is constant and unrelenting,oxycontin,which by the way has taken such a horribley bad rap in the media but IS one of the best and safest pain meds availiable when used as directed,would really be a wonder for him.this med has saved me from having no life at all to one that does now have some good quality on a good day.if his pain is more wide spaced or triggered during certain situaltional times,the roxicodone that I mentioned would really work well.it is just like percocet without the tylenol.

but he does deserve to have this controlled.just speak with one of his 'attainable" docs.if he actually has an oncologist this should be addressed by him.i am rather suprised that your hubbys pain has not actually been addressed by now,just becaue cancer IS painful.can't any of his docs that he had been seeing actually notice this?like you don't have enough to worry about.

i would call his primary at this point,today and set an appt for your hubby and of course with you comming along just to spaek with this doc about Rxing him something for his pain.if this doc does not do this for him,it is the same thing as neglect of a patient,the doc knows this but some are very hesitant to Rx the right meds because of possible problems with the DEA.in any case of Rxing pain meds comes down to having the reasons for the narcotic Rxing well documented.in your hubbys particular case,there IS a very real need for pain control.dO NOT leave that docs office without an Rx for an appropriate pain med.in my opinion,anything containg oxycodone would suffice.the meds I mentioned are both oxy based.anything less would contain tylenol.like vicodin?that only comes with tylenol in it you cannot get it any other way,you can however get tylenol #3s without the tylenol,its called something like codiene phosphate or sulphate?but the oxy based I think would be the best choice for his particular needs,and this would also hopefully help him to get a good nights sleep as well.

just remeber,any doc that would knowingly let a cancer patient continue to suffer after he discloses the fact that he IS indeed suffering needs to be reported to the AMA for neglecting his patient.you may need to remind his doc about this just incase he balks.hopefully he will do the right thing.I do wish you luck and have been praying that that liver will come soon for you.hang in there and make that doc appt today and get him in as soon as possible.your hubby should not have to suffer with this.good luck,marcia

 
Old 07-18-2006, 11:27 AM   #12
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Re: Liver transplant NIGHTMARE

Feelbad-
I am so sorry for the pain YOU must be in---bone pain, back pain -they are the worst. My hubby's pain is sort of a non generalized pain raidiating from his right side where they stuck him with one HUGE needle to try to obtain a sample of the cancer (unsuccessfully) tissue. Since the cancerous growth, at that time was so small and located periously close to his vena cava, they made only one attempt at getting a sample and quit. Since then (Jan. 20th) he has complained off and on about pain in that area--sometimes that is "excruciating" and sometimes that it's just annoying. I think he should see a dr, obviously, but he admitted to me last night that I am driving him crazy with my "nagging" about seeing a dr for this (and several other complaints) which I feel merit a dr visit. I asked him if he just wanted me to shut up and he said "That would be nice". Man--what a slap in the face. I said, "So you want to me to sit back and not say anything and just let the system that has been failing you for 7 months continue to fail you?" He said he felt that the drs knew what they were doing and he totally had to trust them and he was afraid I would get mad one day and call somebody and get lippy with them and get him put on a "most hated patient" list. He asked me to "stay out of it". So I said, "Ok, I can do that, but do NOT tell me how you are feeling and do NOT complain to me about how poorly they treat you and how they don't return calls, etc. I don't want to hear a word until you get called for a transplant or you get de-listed because your cancer is too big"
So we left it at that--when we went to bed he was groaning because his side hurt so bad and I just turned over and went to sleep rather than give him any sympathy--yeah, I know that was mean, but honestly, I can't keep up with this. He has to be John Wayne all the time! Oh well, I will continue to care for him but I'm not offering him tea and sympathy..evidently I'm just too "annoying".
Thanks for your advice on pain meds, but he won't take anything at all--like if he took a Lortab one night, it would be the night they called him and he'd be rejected because he had 5 mgs of hydrocodone on board. Ridiculous.

 
Old 07-20-2006, 05:47 AM   #13
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Re: Liver transplant NIGHTMARE

sorry your 'patient" is being so very difficult,that just HAS to be driving you to the brink.getting to that therepist would really benefit you alot right now in dealing with all this crap.

I think part of your hubby is still in denial and the other part is suffering some depression.i feel at times just like what explained about your husbands latest reaction,like I just don;t want to deal with this anymore(all of my ongoing Dxes of just plain bizarre and soo nasty syndromes and multi medical problems)I do feel like just letting happen to me whatever is going to happen and just say screw it all.I too am very scared for my future and really cannot just really sit and think about all that I am dealing with all at the same time.its just too much,too much to take in all at once,so usually I will deal with what is screaming the loudest at me that particular day and try and keep the other crap kind of 'blocked" out of my mind as much as possible,exept for the pain,thats always there,and kinda hard to try and "hide" from.

i know what your hubby is doing and saying to you is really making you crazy,but honestly,his reaction is most likely because he is just plain scared to death.and this is his way of dealing with it,by "not' dealing with it,do you know what I mean?the less he has to aknowledge it,the less real it all is.is this making any sense to you at all?Despite what he says to you,he really does need you right now more than you will ever know,he just doesn;t know in what capascity that is for you.he is the one that is going to have to figure it out.

backing off right now,i think would really be in the best interest of both you.eventually he will tell you what his needs are,once he figures that all out in his head.hes just really scared and confused and is currently waiting for that call that may or may not come.thats a really tuff spot to be in for him and you.but he IS the one that is the patient in all of this.not that your feelings and what you are dealing with is any less real or important,but this IS his medical problem,his pain and his possible mortality.

just give him a little time to try and get things more straight in his head,and then ask him,just what part do you want me to play in all this?i don't know what your needs are if you wont tell me what is REALLY going on inside of your head.what are you feeling and how can I make that better for you somehow?honey,i am watching you suffer thru all of this pain and WANT to make that part better for you,he knows he is suffering but maybe feels that if he gives into that pain,it is more real to him somehow??maybe by doing this,he will be able to actually express himself and what his real needs are and where you actually kind of 'fit in" in all of this.

I know you are feeling like you are just slamming your head into this big wall in front of you,but you ARE doing something for him by co ordinating all that you are currently dealing with here.and by the way,I do think you are doing a wonderful job and are trying like hell to cover all the bases.just from my experience with my son and now being on that flipside with all my crap,the whole thing is just sooo much from both sides.both sides have their own seperate issues that need to be dealt with,by the patient and the caregiver/advocate.you AREdoing the best you can under the circumstances,really.hopefully that call will come soon and then you two can move onto the next "chapter'

i am curious about something you mentioned in your last post tho.when you mentioned that if he took even a lortab he would be rejected just because he had hydro in his system??whats up with that?i guess i don't understand why they would reject him for having meds in his system??could you clarify that for me a bit better?do they consider that as some sort of abuse like if he had been drinking any alcohol or what?even if the meds had been rxed for him at one time?just wondering.hang inthere liz,and seriously,start seeing someone,anyone that you can just vent to and keep all the crap your dealing with from getting too overwhelming for you.you have to take care of you too ya know?Marcia

 
Old 07-20-2006, 12:19 PM   #14
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Re: Liver transplant NIGHTMARE

Marcia,
I do thank you for your replies and I find that I look forward to hearing from you!
No, my husband is not and never has been a drinker, he also never takes drugs, except for Imitrex for occasional migraines, and no one told him he coudn't take Lortab for pain--he has, in fact, done so on a few occasions when he's been in a lot of pain. I am POSITIVE they would not disqualify him for a transplant based on having taken a Lortab a few hours prior. Lots of transplant patients are already in the hospital in extremely painful full liver failure and I'm sure they are given pain meds-it's just him being him--you know, if I offer it, he won't take it.
I actually have stepped back about ten "giant" steps in the last 10 days or so. I have not brought up a single comment about his illnes or treatment. I know he is conferring with my DIL (a dr at Yale Med) who is having all his records looked at by the transplant team at one of the hospitals there (although I am not supposed to know this) and if he chooses to share the findings with me, or if he chooses to even go there for the actual surgery I suppose he'll have to tell me. Otherwise, we don't speak of anything remotely health-issue related. It's hard and I feel bad he's truly sick some days, but other than providing him with an orderly home, and healthy meals and doing all that I usually do, I don't fuss him at all. If it's a "don't worry, be happy" attitude he wants, well, I can fake that for him. I have plenty of friends I can vent to.

Iam fully aware he IS the patient, though not a very good one--I do look forward to the next chapter..the post transplant (if that is what it is) because it will signify the beginning of our lives again. We have lived so long with this THING hanging over our heads. I do know that he is very depressed and does not handle that well-mostly by lashing out at me, and that really hurts. I have found that by remaining completely calm and just walking away when he's angry is best, b'cuz he isn't angry at ME. I don't want to hate him, and I know that I could if this goes on for months and months.

Well--I do need to run. Again, thank you for your comments! I appreciate you & your insight into a weird situation.

 
Old 07-28-2006, 10:28 AM   #15
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Re: Liver transplant NIGHTMARE

Well--
It's been arocky week or so but I think we've made some progress. My DIL at Yale got the attention of one of the transplant docs there who took an interest in hy husbands case. He was APPALLED that someone so sick had not been seen or talked to by a doc since Feb 14th. W/O my knowing my hubby faxed all his medical records to Yale and this doc along with the hepatologist invited my DIL to sit in on a conference about hy hubby's condition. They said they'd love to have him in their program and they had only one O+ patient, so he'd get a liver much more quickly--plus they promised him VIP treatment (maybe because my DIL is dr also--really, I don't care why) My hubby has the CELL PHONE numbers of both these docs. SOOOO--he(my hubby) calls his dr here and lets his receptionist know he is planning to move to Yale for the transplant due to the shoddy care he'd gotten so far and suddenly we've got docs crawling out of thewoodwork to get him reimaged and re-tested, etc. Ha! It IS political and it IS who you know--as much as UNOS says its' all about the "patient" and being "without prejudice"..what a line. We still do not know what we are ultiately going to do, but at the very least, we have the attention of the doctors. (Turned out they had been "squabbling" soto speak about how to best treat him all along--one had been adamantly refusing to allow a transplant and one was pushing for it.) well, whatever, we have an option and a couple fo docs whoom we've never met eho have shown more caring and compassion in three days than ours did in 7 months. Go figure!

 
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