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Went to Transplant Cener

Dec 12, 2012 - 74 comments

No more majijuana, well shizz, that ***** It keeps my quality of life going. Confused, took me off work, fallling all the time, I'im so bruised and hurt. Looks like things could get worse. First get my bowels working and my ammonia down. I'm out for a few weeks right before Xmas, that figures.

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163305 tn?1333672171
by orphanedhawk, Dec 12, 2012
Why no more pot ??

163305 tn?1333672171
by orphanedhawk, Dec 12, 2012
Okay, I see you must have encephalopathy. Bruising and falling down go with cirrhosis. My guess is they want you to stay as clear headed as possible though mj can certainly help with pain.
Did they put you on lactulose ?

Try some nice hot baths and massages if you can. That will help with pain.

Good luck

3211536 tn?1359389169
by creewoman, Dec 12, 2012
They also tod me no Marijuana said it has effects on hep c folks livers?Huh?I thought it would help with pain and appetite,lungs bronchial maybe.She must think growers use herbicides and fertilizers.We have lots of the stuff local.I don't smoke it anyway I am already air-headed don't need no help.

Avatar universal
by rivll, Dec 12, 2012

McKansas- I think no pot because many places exclude ppl from getting a transplant if they use...sorry, I know it really helps with the pain.
Snow, " I am already air-headed don't need no help."  you crack me up!!! Love ya snowbank!

I was just sitting her vaporizing to help me sleep...thinking now I better stop until I figure this out. I am cirrhotic but compensated. I would hate to think it could causing the high enzymes I have. Scary.

McKansas -I haven't said much to you, but I read everything you post and I am praying for you. Lots of good thoughts and admiration for you.

4043517 tn?1374010173
by mckansas, Dec 13, 2012
Yeah I tell ya, this is the hardest thing I've ever done. Pot has kept my cirrhosis at bay since 1974, but 'more study is needed', ha ha ha. Don't know if I can handle it. They gave me some liquid and a pill twice a day to help me "poo" and "fart". Farting is working, but 'poo' not so much. Two yesterday, a record for me!!!! Yeah! Usually every 5-6 days, still hard though and hurt likes a mo for coming out. My son made me keep my door open to the bathroom so I can grab onto something before I fall, like break my arm holding my body up or something. I am black and blue all over. This doc didn't understand Butrans so I guess he's campaigning to stop that too. Lovin' my life.

4043517 tn?1374010173
by mckansas, Dec 13, 2012
orpahnedhawk, we live in the 'bible belt' whatever the hell that is. I guess no fun, no pain relief, just pray, pray, pray, that's how god made the typewriter ya' know.

163305 tn?1333672171
by orphanedhawk, Dec 13, 2012
I forgot that using pot could make it so you can't get a transplant. Sadly it is still equated with drugs. You have to not use pot or alcohol for 6 months prior to being transplanted.

One man in LA was prescribed mj by his doctor yet they used it as a reason to deny him a transplant.
Very sad.

Can't comment about the bible belt, I'm an ocean hugger~ lol.

This may sound weird, but to help get your intestines working, try massaging your belly. Begin at your waist and make circular movements in a clock wise direction, from your belly button, over to one side, down around and back up.

Good luck.

4043517 tn?1374010173
by mckansas, Dec 13, 2012
Well, non one around to do that. Thanks for advice though

4043517 tn?1374010173
by mckansas, Dec 17, 2012
My life *****, I fall do all the time, went on disability. Sleep,sleep, take hot, gotta give up marijuana. Life is over.

Avatar universal
by rivll, Dec 17, 2012
So sorry.
I have read (I will look up the link and post it in a minute) that probiotics help with the problem you are having with your bowels and HE.

Avatar universal
by rivll, Dec 17, 2012
Here is a link
http://www.medscape.com/viewarticle/712613

I recommend you discuss it with your Hepa and continue with the meds s/he gave you.
Good luck and all the best to you.


163305 tn?1333672171
by orphanedhawk, Dec 17, 2012
My suggestion for the tummy massage, is something you do yourself.

Having been through a transplant I can say that in a way, yes, one life is over, but  a new one begins. Getting a new liver is like going from the cocoon out into the sunlight as a butterfly. It truly is a metamorphosis.

It's sad that they won't let people use marijuana and get a transplant, but that is the way it is. This is not forever.
After your transplant, you can use the wicked weed again:)

Use a cane, to help you keep your sense of balance if there isn't anyone to walk with you. You can still do some gentle exercises while lying on your back.
Watch comedies to try and keep your spirits up.
There is light at the end of the tunnel.



4043517 tn?1374010173
by mckansas, Dec 18, 2012
Really? I've smoked for 40 years, this is worse than cigarettes. In fact I am smoking them again, s*t on me I guess. Damn, doc suggested a cane today. Told me to keep taking that lactulose stuff at least once a day. OK, I will. But, honestly if I'm going to die, what difference does it make if I stop of not? My life ***** right now. Please, no "c'mon life is SO worth it. Like going broke and losing your house? Being a burden on your kids? I'd rather leave them a life insurance policy than watching me get worse and worse.

4043517 tn?1374010173
by mckansas, Dec 19, 2012
So when do I quit smoking? I guess they will throw me in rehab, better get some of that clear out liquid. Don't know if it works on blood samples though. Better go by those stores.

4043517 tn?1374010173
by mckansas, Dec 19, 2012
The internet says 7 days, guess I'll be safe and stop at 10. What do you think?

4043517 tn?1374010173
by mckansas, Dec 21, 2012
Trying to enjoy the season, but uhhhh it's the last one as far as I can see. I have a "difficult" case, ha ha ha. Keep up the good fight all.

4043517 tn?1374010173
by mckansas, Jan 11, 2013
my HE is under control better, still can't remember shizz. Unfortunately after stopping MJ use since December 8 I still tested positive for it 1/10/13. Looks like I'm a liar, but doc said it takes a while for the liver in my state to get it out. .Not only that I got the hep A & B vaccines and they aren't even showing up in my system, gotta get a double dose shot and try again, so I'm thinking my flu vaccine didn't take, my latest tetanus probably didn't take. Very frustrating. Hope I don't get turned down, but it's very frightening learning all the stuff I was just educated about for the last two days of evaluation and endless testing. None as painful as that September liver biopsy though although arterial blood gas was a hella painful couple of sticks.  But, I hope I can get into treatment, the control of the HE has turned me around again. Just can't remember crap and so so tired all the time. Gotta get back to work, I can't live on disability I will lose everything. Waiting, but in a better frame of mind.

446474 tn?1446351282
by HectorSF, Jan 12, 2013
Hi. I read your comments and some of the posts. You are at the beginning of the transplant waiting list process so you have plenty of time to learn about managing your cirrhosis. Most of the comments I have read on this post are not correct  or misleading and I'm afraid you are misinformed in your understanding of cirrhosis and what is happening to your health.

I will comment only on your last post to keep things simple.

Apparently you do not have proper care and hopefully you will be care for by the transplant center by doctors that understand your condition and treat patients with the same symptoms as you everyday.

'my HE is under control better, still can't remember shizz....so tired all the time'
That means your HE is NOT under control. Poor memory, confusion, coordination problems such as failing down are only some of the symptoms of HE. I think you mentioned that you take Lactulose once a day? That is not enough. It may help a bit but won't manage your HE. Which is why you have poor memory. The key to Lactulose is taking it so that you have 2-4 bowel movements per day. Most of us with moderate to servere HE need to take it 3-4 times per day throughout the day to relieve our symptoms. Also if you have insurance ask your doctor about Xifaxan. It is a drug that relives HE without all the nasty side-effects of Lactulose. It is an expensive drug but if you have insurance you may be about to pay the co-pay cost.

Two days of evaluation for list for transplant is only the beginning of a journey that for most cirrhotics takes many years progressively worse disease before we ever are eligible for a transplant.

Your assumption that vaccines don't work in cirrhotics is false. Vaccination is standard practice in all cirrhotics. So all of us that are listed on transplant waiting lists have had them as they prevent life-threatening infections which cirrhotics are prone to. Double dosing or repeated dosing of vaccine for hep A and B is not uncommon in patients with moderate and advanced liver disease. As low seroconversion rates are due to more advanced disease, alcohol liver damage and genetic factors. All this information about management of cirrhosis is online as part of standard precautionary treatment in cirrhotics. It must be kept in mind that many more cirrhotics die from infections than actual liver failure.

Please educate yourself about cirrhosis and its complications and what you can expect in the future. I would recommend that you join a liver transplant forum to learn more about dealing with the complications of advanced cirrhosis. Very few people on this forum are on transplant waiting list as there liver disease is not so advanced as to cause HE, massive weight loss, etc. so they have no experience with the serious complication of advanced cirrhosis and their management.

Good luck.
hector


4043517 tn?1374010173
by mckansas, Jan 12, 2013
Lactulose 1 TBLSP  twice a day, the Xifacan 550 mg twice a day. I don't fall down any longer, my frame of mind is better. I still don't have bowel movements but maybe once a day, every other day although the stuff makes you gassy.  I am not an alcohol drinker, never have been, last drink was cinco de mayo last May before I found out about Hep C positive. I've had all the tests now, just being evaluated as back up if they start treatment and things go south really fast is what the hepatologist told me yesterday at the med center. It just annoyed me that I've given up pot, no benzos since December 6, 12 and still testing positive. Hepatologist said sometimes the A&B vaccines don't build antibodies because of the cirrhosis. They will double dose me they believe and see if it takes this time.  I just figure that my flu vaccine probably didn't take either. The hepatologist told me yes it will get a lot worse before it gets better. They want to see where my MELD is right now to see how to proceed as my platelets are so low to begin with . I go back in two months and they may start treatment, maybe not. Just why am I testing positive for benzos and pot when I quit over 4 weeks ago. It is all very frightening especially after all  I learned these last two days. The nutritionist advised I HAVE to eat. I am trying hard again and ate a meal now three days in a row. Only one meal but better and took one can of Ensure. They said try to take one of those a day if I'm not eating three meals. I have learned a LOT about cirrhosis these last two days at the hepatology and liver transplant clinic.   I have to go back to work, hell or high water since things will get even worse soon.

4043517 tn?1374010173
by mckansas, Jan 12, 2013
Not trying to be an ahole, but yeah I have been educating myself, the hepatologist said memory loss is just part of this nasty disease, especially difficult when I am in a job requiring a lot of thought, I am an engineer at an aircraft factory, not a dishwasher, so loss of my memory is especially frustrating for someone like myself who has always been able to think straight. This is straight from the hepatologist.

Avatar universal
by rivll, Jan 12, 2013
"Very few people on this forum are on transplant waiting list as there liver disease is not so advanced as to cause HE, massive weight loss, etc. so they have no experience with the serious complication of advanced cirrhosis and their management. "

I think Hector was not referring to your lack of research but more to the fact that most of us on the Hep.C forum really don't know enough to advise you with your health challenges and he is correct. There are a small number of pre transplant and post transplant on this forum who can be a great help, the rest of us can offer support but we shouldn't offer advice that in turn could be detrimental to you.
No harm in checking out the transplant forum as well, I am sure they have better information for you. Take the rest of us with a grain of salt. :)

4043517 tn?1374010173
by mckansas, Jan 12, 2013
Gotcha, it's a horrible frightening disease. I am happy not to be falling down all the time. Trying to eat right. Learned a lot at the KU Med center when there for all the evaluation and advise. I really like my hepatologist, straight forward guy, can ask anything and he answers ALL my questions unlike the idiots I had seen here in Wichita, especially the GI. Not any of the doctors locally know crap about hep c quite frankly and previous to my two visits I've had with the hepatologist all I knew was what I kept looking up on the internet and asking for my own medical test results, e.g. liver biopsy. Thanks to all here for advice. I am getting into a better frame of mind these days.

Avatar universal
by rivll, Jan 12, 2013
You sound a lot better. All the best to you, mckansas.

4043517 tn?1374010173
by mckansas, Feb 15, 2013
Well I am forcing myself to go back to work, no restrictions,  just so I can hopefully make it either 60 days or 6 months( still unclear on this point) and reset my short term disability. It is, after all some income and better than a downgrade to 60% of my pay. Ughhh My local doc took me off at my request,  hepaytologist says no way should I go back, but he has better savings than Ai. Tough it out, my friends will protect me although my boss is a douche. They are already speaking out to have me sit and do the reallocations,  save me from the 5-10 mile daily walks as I have degraded rapidly these past 6 months. Anyway,  my local doc,  is easily persuaded,  he never had the intellectual curiosity to find out what was wrong for two years of complaints. I know he just saw a giant,  6 ft tall overweight middle age female complaining and he kept thinking why doesn't she just lose weight and shut up. He always told me I had insufficient heart capacity with no testing at all. Funny,  my heart is in excellent condition. Always acceptable blood pressure w usually 117/72, but he never let facts get in the way of his perception. Women, for the most part are ignored as complainers,   how do ya like me now doc? Down 110 lbs,  looking good!!!! So. I will have him release me back with no restriction, hope not to fall off scaffolds at work,  but HE under control with medicine and diet,  next stop ascites if I have to walk too much,  but hopefully my co- workers rally the wagons round me. My pain levels are better controlled and that gives me hope. Determined to do this. If ascites develop well then I will apply for ss. I just dread the overwhelming fatigue and pain spike again. Not to mention the inevitable weight loss slide again. I'm already looking skeletal. Wish me luck, start back on the 25 th.

Avatar universal
by Advocate1955, Feb 17, 2013
This post in your journal answers the question I asked today in your status update McKansas.  Glad to hear you have your HE under control with medication and diet.  Also glad to hear you don't have ascites and it sounds like you don't have varices either.  I recall from your other status update that you go back to the hepa on March 15th I think.  You're in a tough situation, getting sicker and sicker from your decompensated Cirrhosis, but not quite sick enough for a transplant.  It sounds like you have a plan of action.  Your job sounds very demanding.  With your HE under control, you will probably be able to handle the mental demands of your job, but the physical demands of working full time will be very challenging and possibly dangerous for you.  Your body isn't processing nutrients correctly because of your decompensated liver.  Is it possible for you to plan ahead to make sure that you can eat every two hours and maintain the diet and water intake that your hepa has you on?  Can you stock up on Ensure and take it to work?  Can you have a small fridge in your office to keep your protein snacks, etc. in?  Another suggestion is to keep documentation of the way that your condition affects your ability to work, time missed due to appointments, time missed due to complications, duties that are dangerous or difficult for you to perform, etc.  Keep a record of that type of information so that when you go to reapply for your disability you will have all of that.  Would you be able to ask your supervisor for some accommodations (under 504 disability law) such as a reduced work load, reduced work hours, fewer physical demands?  I know that asking for accommodations can go both ways:  you might receive them, but I guess there's always a risk of discrimination too.  Sounds like you may want to find a different local doc, one who either understands liver disease a bit more or one who will communicate better with your hepa and coordinate with him to manage your local care.  My hubby's PCP is not knowledgeable about Hep C or Cirrhosis, and we have thought about changing to another PCP who is more knowledgeable, but we are very close in distance to his hepa, so we're able to run everything by her and see her easily if there is a question or concern.  In the meantime, I am the one who keeps the PCP updated and informed so as to avoid any misinformation or issues.  Sounds like the fatigue and weakness may be your biggest challenge returning to work.  What about a gradual start back to work, i.e. start with 3-4 hours per day and gradually build up over 2 weeks?  Would your supervisor go for that?  Would it help to set alarms on your cell phone to remind you to eat, drink water, take meds, while you're at work?  Does your place of employment have any additional supplemental insurances that you might be able to purchase, such as short/long term disability insurance?  Glad to hear you have supportive friends at work.  Glad you're being seen regularly by your hepa.  I'm wishing you luck on your start back to work on the 25th.
Advocate1955

4043517 tn?1374010173
by mckansas, Feb 17, 2013
I am on the factory floor, close to the mechanics in order for quick response. It's about 1/3 mile walk just to get to my desk and if a problem is at the end of the line thats about a 1/2 mile walk. I usually walked a minimum of 5 miles a day usually around 7 miles a day. I am almost 58 yrs old and don't want to risk a medical layoff so I'm gonna tough it out, hope my co-workers protect me. There are mini fridges all over, no problem with that. My boss is a ****, no sympathy expected from him. Got more help from my ex boss in thoughts/calls than my current one. It's a young persons game out there, have to try and get back into it. I prefer my lame pcp as he is easier to manipulate into writing a different reason for my disability if I don't make it, e.g. musckoskeletal issues, depression, etc. Now that I understand my disease better I ammore alert to symptoms. Like I mentioned my hepatologist would not let me work, but he has more savings than I, ha ha. Hope I can last for at least a few months but I don't know. Part time is restrictions and that is too risky right now. I wish I had more choices but its just me and my three young 20 something kids trying to make it also.

Avatar universal
by Advocate1955, Feb 18, 2013
Well, we do what we have to do.  Would a motorized scooter help for those large areas where you have to walk?
Advocate1955

4043517 tn?1374010173
by mckansas, Feb 18, 2013
Ha ha you don't know what an aircraft factory is like. No. Not possible. Maybe a bike, but I'm wobbly and crashed after passing out last time I rode. It scares ne now.

Avatar universal
by Advocate1955, Feb 18, 2013
Yes, I remember when you posted about crashing.  Take things slow and careful.

4043517 tn?1374010173
by mckansas, Feb 18, 2013
Well, New update, Hepatologist called, recommends I apply for SS disability. 6 months of waiting, ****.

Avatar universal
by Advocate1955, Feb 18, 2013
Will you still go back to work on the 25th while you apply or do you have to not be working to apply?

4043517 tn?1374010173
by mckansas, Feb 18, 2013
Not working, dillemna although I honestly don't think I could last a week without bleeding, falling or having to cover up my symptoms, just confused as to what to do.

4043517 tn?1374010173
by mckansas, Feb 18, 2013
I wish I had some brothers or sisters to help, but oh well, my daughter is so supportive, I love her dearly and lean on her reversing the role of mother/daughter. She told me she didn't want me to go back to work because I'm so slow and confused in the mornings but didn't say anything because I get stressed, but she was so afraid I'd pass out or start bleeding. I want to live and I'm trying so hard to keep this HE in check, taking my medication regularly, just walking yesterday wiped me out today with pain and fatigue, unbelievable. I used to have so much energy it's difficult to face this decline.

Avatar universal
by Advocate1955, Feb 18, 2013
I know it's difficult, but I hope you can follow the hepa's advice, not go back to work, and apply for SSDI.  At this point, the risk of complications is so high and the risk of getting hurt or making yourself more ill from fatigue is so great.  I hope you can stay home and take care of yourself until the time comes for your transplant.  I'm glad you have your daughter with you.

4043517 tn?1374010173
by mckansas, Feb 21, 2013
I remember some training we went thru back in the 90's about change, SARA and re-reading my posts makes me think of this. I've gone thru them all Shock, Anger, Rejection and finally Acceptance, sprinkled in with confusion, forgetfullness and hostility. Glad to be part of the this supportive community of fellow sufferers and fighters.

Avatar universal
by Advocate1955, Feb 22, 2013
Yes, you have indeed mckansas.  I'm so happy to see you fighting for your health and in a place of acceptance.
Advocate1955

4043517 tn?1374010173
by mckansas, Feb 23, 2013
Stupidly went out to eat yesterday at the encouragement (nagging) of family, doctors to eat something other than Ensure all the time, worst pain in gut all night, freezing cold, but I'm placing the blame on watching the Food Network, especially Restaurant Impossible and Worlds Worst Cook that made me think I SHOULD be eating something other than the occasional bread, cereal and three cans of Ensure a day. My abdomen is just going to explode someday and peritonitis will set in and that will be the end. aaaaaaaaaaahhhhhhhhhhhhhhhhhhhhrrrrrrrrrrrrrrrrrrrrrrrrrrrrrggggggggggggggggggggghhhhhhhhhhhhhhhh

Avatar universal
by Advocate1955, Feb 23, 2013
I'm sorry you're in so much pain. I wish I had some suggestions to offer, but I'm just not sure. I have a Magic Bullet, a small food processor/blender and lately I've been making fruit/vegetable smoothies and adding protein powder. Would something like that work for you?

4043517 tn?1374010173
by mckansas, Feb 23, 2013
Just a long, horrible disease, I'll make it. I'm determined to make it.

Avatar universal
by Advocate1955, Feb 24, 2013
Maybe the nutritionist at the transplant center would have some suggestions?  

4043517 tn?1374010173
by mckansas, Feb 24, 2013
Ate some some cheerios, not bad, my daughter is making me eat some spinach and tortellini, we'll see.

4043517 tn?1374010173
by mckansas, Mar 01, 2013
I knew I shouldn't have eaten those Cadbury solid chocolate eggs, but damn...they used to be my favorites.  What a life, over caffeinated, stomach upset, crazy. Gotta splurge sometimes tho even if paybacks are hell. It's not like I have to do anything besides worry about bills nd my health. Should have been more aware in the 70's ha ha

Avatar universal
by Advocate1955, Mar 03, 2013
Sorry about the Cadbury solid chocolate eggs.  Did you see ejoli's post about the chocolate eggs she ate that were recalled due to salmonella?  It was on the social side.

4043517 tn?1374010173
by mckansas, Mar 03, 2013
Gross, makes you wonder under what sanitary conditions they're manufactured in. No more for me.

4043517 tn?1374010173
by mckansas, Mar 05, 2013
This disease is so insidious, some days good, most days bad, pain,spasms, forgetfulness is random and strange, hair loss, fatigue increasing, and I'm not even on treatment, just waiting for rise in score. Taking medications as directed, but some days start stumbling and almost falling again. I used to work two jobs, had a lot of energy, worked in a thinking job has hit me the worst as I can't think straight any longer. Struggling to make bills each month, applied for SS benefits, but that takes awhile. Looking for resources, older brothers don't talk to me, one is extremely financially well off, but has that 1% mentality, pull myself up by my bootstraps, ha ha. Never bothered me before, but desperate times now. Hanging in there. Maybe I'll hit the monetary lottery instead of the poor health lottery:) It's even worse when I read about someone like Hector who is superhuman and we all pale in comparison to his strength and will power. I definitely see why many give up as most can't rise to that level of strength. At least my coconut moisturizer has stopped the itching:)

Avatar universal
by Advocate1955, Mar 06, 2013
Hooray for coconut moisturizer!  Are you drinking a lot of water too?  That might help with your itchy, dry skin, as well as with your HE.  When is your next appointment with at the transplant center?

4043517 tn?1374010173
by mckansas, Mar 06, 2013
I drink at least a gallon a day of water, constantly have my cup by my side. Occasionally drink coffee, but refill jugs at Culligan water station at store. My son bought me an Aquasana under sink filter, installed it yesterday 'cause he said he was tired of lugging jugs for me, ha. Anyway, the filter is great, right at the sink, no chlorine, lead, etc... tastes as good as the Culligan refills. He said it would pay for itself in 3 months at the rate I drink water. Supposed to go to transplant center next Friday, 15th. Somedays feel so crappy, others OK for awhile, but mainly sleep off and on, bed, couch, chair, mix it up.

Avatar universal
by Advocate1955, Mar 06, 2013
Culligan sounds great. I love water, but mostly just drink tap water. That fatigue and sleepiness is part of this terrible stage of liver disease. I'm hoping you feel better and get your new liver soon.

4043517 tn?1374010173
by mckansas, Apr 05, 2013
Although these doctors prescribe medications I don't for one moment believe they care, other than dispassionately, regarding my health. I keep in mind I'm merely another 15-30 minute entry on their to-do list for the day. Mostly to cover their butts,  prescribing judiciously,  following the treatment guidelines,  monitoring my compliance in order to ultimately justify my recovery or death. I feel I'm a specimen under a microscope, viewed for its scientific value, if I move from view there are plenty more where I came from. Sometimes feel like being totally non-compliant,  but where would that leave my family? I hate doctors for the most part,  majority appear to have little intellectual curiousity regarding symptoms,  they have their answers down pat, don't seem to truly listen,  they passed their tests,  got their certificate,  the good life follows. Ive seen my charts,  it's a grim joke to read the entries,  "I advised patient..." "patient asked....I recommended ...' so so sterile in black and white.I realize they cant afford to invest in caring as that is too psychologically damaging and there are plenty of future patients to prescribe for, but nonetheless dispiriting if I dwell on these factoids too long. So even if I comply, do what I'm told I may have my health but no home, car, or utilities in which to enjoy this. I'm hanging on a couple more months, but work will set me free. It is up to me. It is my life.

4043517 tn?1374010173
by mckansas, May 24, 2013
Updating, doc out of town and rescheduling my appointment for July 19 instead of June 28.


4670047 tn?1375734001
by mzkity, May 24, 2013
Geeze! Don't ya just hate it! Poor thing it will go by quick. Hang on girl!!

Avatar universal
by Advocate1955, May 24, 2013
Hang in there mckansas.  Hope you're feeling relatively well.
Advocate1955

446474 tn?1446351282
by HectorSF, May 24, 2013
Transplant is a waiting game 95% of the time. It is best to see it that way and adjust to it. It is the same for everyone. Remember it can takes years after being listed for transplant before a patient gets a transplant and the transplant operation is only the start of a new life.

For what it is worth....this is just my two cents worth for my experience...
"Although these doctors prescribe medications I don't for one moment believe they care, other than dispassionately, regarding my health. I keep in mind I'm merely another 15-30 minute entry on their to-do list for the day. Mostly to cover their butts,  prescribing judiciously,  following the treatment guidelines,  monitoring my compliance in order to ultimately justify my recovery or death. I feel I'm a specimen under a microscope, viewed for its scientific value, if I move from view there are plenty more where I came from...Sometimes feel like being totally non-compliant "

Based on my own experience for many years going to a transplant center patients that have this attitude and relationship with their doctors and the transplant center tend to suffer most (psychologically and physically) and generally have poor out comes. For many patients going to a transplant center is the only way to save their lives. If you are dependent for your very life on doctors that you don't trust and despise outcomes can be good. As when you get close to transplant depending on how low they transplant at you may be totally disabled and pretty much dependent of these very people to feed you, change your bed pan and perform procedures on you that you are going to suffer through. It is hard enough suffering with a MELD score in the upper 20s or 30s then try to fight your caregivers.

We all bring on own issues to transplant. Don't get me wrong you are not unique in that. Many of us have unresolved anger issues. Many of us blame ourselves for our illness especially if we have a background of drug or alcohol use. Carrying around these issues will only hurt you. Many of go to support groups, therapists, psychiatrists to deal with the mental issues of transplant and the chance of death. Fighting the world, like fighting liver disease over time once a person decompensates is a waste of energy. We need to focus all of our energy on positive thoughts in order to get through the many set backs most of us go through either pre or post transplant. That is why everyone is chanced by the process and usually for the better. We have to confront our demons sooner or later and let go if we are ever to find peace. Luckily most transplant patients don't end up like me after 3 years of being listed and moving up the waiting list to be ineligible for transplant and facing death probably within a year.

My suggestion is either change you attitude or find a transplant center with doctors you can relate to and that have your best interest at heart.My opinion is based on meeting and talking to over 200 transplant patients over the last 3-4 years.

You might want to write to mikesimon as he has been through it all and I would imagine would agree with what I am saying.

It is your life to live have ever you want to and I wish you good luck!
Hector (howie)

4043517 tn?1374010173
by mckansas, May 24, 2013
Thanks all for your comments, it's up and down for me, I know it's the disease, but I've tried to just make my mind go elsewhere instead of brooding on my selfish issues. Basically it's most doctors I don't trust, I realize they can't get that involved or they would suffer greatly when they lose a patient. It's just frustrating.

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by HectorSF, May 24, 2013
It is up and down for all of us. Some of us are facing life and death depending on our situation. No greater roller coaster than that. I am not saying it is easy. But is we want to live sometimes we have to do anything to achieve that. And most times it involves suffering that most of us have never experienced before. Not sure how ill you are but my MELD score is 33 now and in a few weeks will be 35 if I don't get kick off the waiting list for good. So I understand what you are taking about. I have almost died a number of times just this year. It ain't fun or pretty I can tell you but I am alive today and that is all any of us have. There are no guarantees in life. Best to live and and love it while we can.

Doctor's at transplant centers lose patients lose patients on a regular basis. Any doctor that saves lives also loses people. It is something they have to adjust to. I am not saying it is easy but it is part of working at a transplant center. If your doctor isn't caring that is their problem don't make it yours. My hepatologist is one of the top people in her field. Not only is she an expert that writes practice guideline for the AASLD but she is one of the most caring people you will find anywhere. It is the ideal situation and I realize I am very lucky reading the horrible stories of so many others and meeting transplant patients that have been at other centers.

Frustrating? Absolutely!!! It comes with the territory I'm afraid.

Good luck to you!
howie

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by halfwatt, May 24, 2013
Wow McKansas - what a story. I really feel for you. I can also relate to a lot of what you have shared.

I just went through the transplant evaulation process myself and was "declined" because of my HCC.

So if you are currently listed then in a sense you are "lucky" - you are still in the game.

I know that is little or no comfort but sometimes things are relative and it is all I can offer.

I wish you much luck and the strength to continue the fight.

Best to you,
Brian

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by mckansas, May 24, 2013
What is HCC? Too bad, can you try somewhere else?

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by mzkity, May 24, 2013
He has hcc--hepatocellular carcinoma. Liver cancer. He's had the Tace procedure on both tutors. It's the same thing Hector is going through. He's doing good it sounds like. Not easy for any of you with liver disease. I wish you could smoke pot again. Was reading some of the posts above. Well keep on truckin girl!!

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by mckansas, Jul 19, 2013
So, back from transplant center and very good news. I am controlling my decompensated liver very well, my MELD is down, it's 9. My labs were good, sonogram good and doc says he is just waiting for the new interferon free drugs to be approved (sofosbuvir?) to try these on me. Thinks it may well work great on me, doesn't want to risk the currently available drugs as it would worsen my condition and I'm doing what I'm supposed to. I asked about fatigue, he said that is the number one complaint and issue with this disease, the overwhelming fatigue, but he's please with my regulation of sodium, weight, etc. just wants me to get more protein in my diet. So, very good visit, don't have to go back for 6 months unless something drastic happens. Told him I ate a corn dog swelled up horribly, but laid about with my feet up drinking water and eating watermelon and he said that amount of sodium will tip you over the edge, good thing you got a grip on it, but if it become uncontrollable let him know. They are moving into a new facility there, expanding since hep c and liver disease are the hottest new diseases, ha ha.

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by mzkity, Jul 19, 2013
That's very good news!! So I guess your new normal is working for you. Great!  You sound very upbeat!!  Don't over heat back there!

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by mckansas, Jul 26, 2013
So glad I don't have to go through the interferon treatment, you guys that do are strong. I respect that. BUT, I'm still glad my hepa votes to not put me through this, especially now that I've stabilized myself.
Since my daughter has to get her gallbladder out, next Tuesday-she has three gallstones that are an inch, one a little over in her gallbladder. She is typical caretaker mode, forget about your own problems when you are taking care of a cirrhotic, HCV, HE patient as you can't be feeling as bad. This is SO WRONG, listen to your own body caretakers, you too have aches and pains.
I feel wanted knowing I can help her for once. One thing, we've been eating gluten free and I'm getting more protein now that she has to eat what I'm supposed to eat too. It makes me focus on eating more than Ensure and fruits. Hopefully it won't set me back, but I think it's getting more protein into my body. Today had gluten free farfale, stir fried with light Olive oil the spinach, mushrooms, garlic, rosemary, added Parmesan, pretty tasty and it sets well in my body. The gluten free is more expensive, but hey, I got food stamps and that has helped immensely this week:)

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by mzkity, Jul 26, 2013
My sister had her gallbladder out, it went very well. I'm sure your daughter will do great! Wish her well from me!

I'm going to try your recipe! Sounds good! My sister (the gallbladder sister) read some testimonials on people who went gluten free and they all feel fantastic. Well I guess I'm going to try it! Can't hurt! I'm eating so much sugar. I cut out salt and added sugar! Lol!! There is so much gluten free food now, makes it easier.

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by mckansas, Jul 26, 2013
Yeah I made gluten free rice krispee treats.  Gluten free rice krispees, gluten free marshmellows and almond butter. Tastes the same no stomach pain!  For the sugar kick!

Avatar universal
by Advocate1955, Jul 30, 2013
Glad to hear your appt with the hepa went well mckansas.  Sorry to hear about your daughter's surgery today, but I'm sure she'll do well.  It is a much smaller surgery than it was when I had my gall bladder out in the mid-1980's.  Keep us posted and let us know how she's doing.  Congrats on managing your decompensated liver so well.  You're doing a great job.  That is a big drop in your MELD.  Glad you're feeling better too!
Hmmm...protein...I don't have a lot of great ideas, but I know Greek non-fat yogurt is a good source of protein.  I think low sodium turkey breast is a good source of protein too.  I like to make blended smoothies with fresh OJ, non-fat Greek yogurt, and a bit of frozen Jamba Juice fruit pieces which so far as I know have no additives.  Sometimes I add greens like romaine, kale, or chard to it.  You could also add protein powder to give it a little more protein punch.  Have you asked your hepa if it is OK to eat things like raw spinach and other high iron greens?  I know some hepas say it's OK, and others say that in the raw form the iron content is too high.
Take care, and keep up the good work!
Advocate1955

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by mckansas, Jul 30, 2013
The surgery went well, longer than I thought. She is in a lot of pain, her shoulder is killing her. I guess they pump you with air to see better, hurts your shoulder. She is finally asleep right now, but I feel so bad for her. She said if this hurts this bad I can't imagine what having a transplant is like. My hepa said oh, with new meds in 2014 we could delay transplant until you're way older. I said how old. He said well, we've transplanted 70 year olds. I said, good grief I'd never make it. Oh yeah, they said, lots of people are in good shape when they're 70. Hah, I am dreading it now, that's why I don't eat very much, just trying to keep my levels good. I didn't ask about spinach, I do eat it though. They recommended protein powder, I've been looking at it, but wow it's expensive (non-creatine) will wait for new influx of food stamps and give a canister a try.

Well, looking in on my daughter off and on today. They said in three days she'll be fine, but that's a ways off and she feels terrible. Poor baby.

I'll keep eating my watermelon, gluten free stuff (it really helps, doesn't hurt your stomach like regular food), eating my cucumbers fermented in the Greek yogurt with tarragon vinegar, Ensure and watching over my daughter today. Makes me feel needed:)

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by mzkity, Jul 30, 2013
It's great you can do this. I'm so happy for you. So sorry your daughter is in that much pain. I never remember my sister saying much about the pain. It was awhile ago. Hmmm! But didn't know the had to pump air in, yikes she probably doesn't feel good. Poor thing, there always are kids, no matter what.
So your eating good, that's great. I'm going to have to cut out the sugar. I got a little carried away on treatment. So I though I could keep eating it, NOT. I have been good about the salt. But I'm just going to have to get better at eating. Your diet is been my inspiration by the way! Your experimenting is a great guide. Because I hate to cook. Now if you want me to clean your house!! Hahaha!!! Well on with my day!!!

Avatar universal
by ejoli, Aug 01, 2013
  Hi,    Did your Daughter have open surgery or laparoscopic?  Did she have it done here? Who did her surgery?   Just curious. I  had my gallbladder out last summer but they ended up opening me up since I had so much scar tissue from previous surgeries  I had it done at Ku by Dr. Kumer. He's one of their transplant surgeons.
                  I'm glad to hear you are doing better!  Just have to stay on top of things.    Take care,   Libby

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by mckansas, Aug 01, 2013
Dr. Gaston on N. Ridge. Laproscopic. She feels terrible.

Avatar universal
by Advocate1955, Aug 01, 2013
Mckansas:  My daughter had a very, very large ovarian cyst removed a couple of years ago.  It was laparoscopic.  They made a couple of tiny incisions in her abdomen, inserted air to raise the abdomen so they could see better, looked and took pictures with the laparoscope to see how big it was, what kind of cyst it was, removed a portion to send it to the lab for viewing to make sure it wasn't cancer, and then removed the entire cyst (6 cm x 10 cm) and all of the fluid inside of it contained inside of a baggie through the tiny incisions so as to avoid spilling any of the pieces or contents of the cyst into her abdomen (in case it was cancer).  Thankfully it wasn't cancer.  I think her procedure was probably similar to your daughter's in terms of type of procedure and extent of invasiveness.  My daughter had her surgery mid to late morning and was discharged about 6 PM.  She was feeling little/no pain then because of the effects of anesthesia and pain meds, but by the time we got home and by later in the evening (10 PM - midnight) she began feeling a lot of pain (mostly in her shoulder and chest).  They had told us to expect that.  It is the way that the air is dispelled from the abdomen and is released throughout the body, I guess.  She didn't like taking the pain meds because they made her nauseous, but if your doctor can take those routinely as prescribed for a day or two, that will help.  They also suggested that she take Gas-X, which seemed to help a bit.  The first night home, she spent the night sitting up in a chair, nodding off, because of that shoulder/chest pain.  She felt at times like she couldn't breathe, so we sat up with her and tried to help her change positions and stay calm as the air moved around.  Saturday was similar (day #2), but by Sunday (day #3) she was able to rest easily.  Truly by day #4, she was up and ready to do most normal activities.  I had to hold her down a bit.  I would say she was fully recovered within a week.

Ejoli:  same thing happened to me.  I had a very large benign ovarian cyst shortly after my daughter's surgery, even larger than her's, but a different kind.  They were going to remove it and my uterus and tubes with laparoscopic surgery, but I had so much scar tissue inside from previous abdominal surgeries that there were too many adhesions, so they had to do a very long vertical open abdominal incision.  Much longer recovery.  In the hospital for 3 nights and home from work for 4-6 weeks.

Advocate1955

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by mckansas, Aug 01, 2013
I understand the light goes through the belly button so I can imagine they're twisting and turning it for the best view. Plus blowing you up. The nurse said you look 10 months pregnant! No wonder she feels terrible. I think it will get better eventually it just seems horrible right now. I made cauliflower crust pizza tonight, see if she can eat it.

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by mckansas, Aug 02, 2013
Ok cauliflower crust pizza still tastes like cauliflower, it's good but I don't know if I'll make it again. Had artichoke hearts, mushrooms, tomatoes and garlic on the "crust". I did eat a few ginger snaps later with my popsicle, now that keeps your stomach calm.

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by mzkity, Aug 02, 2013
Ha! I thought about that pizza last night. Wondered how it turned out!

I feel so bad for your daughter! I hope she's a little better. I wasn't aware of how they did that surgery. That's a lot of air! It does sound very uncomfortable! Wish her well!!!! :)

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by mckansas, Aug 02, 2013
She came downstairs for Ensure, water and some cheez-its (low fat/salt but we'll see). Her shoulder still hurts, belly button, insides, side, etc. But better. I make her walk around her room, told her the rehab people make you do this or the pain gets worse.

Avatar universal
by Advocate1955, Aug 05, 2013
Did she try the Gas-X?  
She should be feeling better by today, I hope.  
It is a lot of air, but they can sure see well and take pretty pictures.  The surgeon came out after my daughter's surgery and showed me pictures of her uterus, tubes, and ovaries, and it was just like looking at a diagram in a textbook.  Perfectly clear.
Sounds like you had a nice, quiet weekend taking care of your daughter, mckansas.  I hope her recovery continues to go smoothly.
Yes, walking is good to get the digestive system operating properly again after any abdominal surgery.
Advocate1955

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