All Journal Entries Journals

Musings

Oct 15, 2012 - 120 comments

Today is Monday, at work wishing I was home in bed. Saturday took a hard spill on the bike down the river bank hitting rocks along the way and flayed the skin off my arm. Now worrying about an infection, I have the arm wrapped up mostly, but it hurts so much, my left leg, ribs etc are crying. Not to mention the daily abdomen, back and shoulder pain throbbing through. Sheesh

Saturday was a decent day, got up and forced myself to the volunteer activity I had promised to do at Botanica gardens, Sunday it was Bootanica and I spent 4 hours putting tattoos on little kids, then walked around the garden until it started raining.

Sunday I had been wrangled into holding an open house, two visitors, I  forgot my phone and spent my time reading Cosmo, hadn't read that in a while so time passed. Went home, made it about an hour and had to lay down, next thing I know I'm moaning and groaning trying to move myself into the bathroom about 11:30PM. Got dressed for bed, and spent the next every two hours waking, moaning, walking and peeing. Popped some Norcos in the middle of the night so there goes some of my stash. Couldn't help it, this **** hurts.

Comments
Post a Comment
4043517 tn?1374010173
by mckansas, Oct 15, 2012
Wow, I could use that $11K myself, congrats! Everytime I go there I get nervous looking at all the machines knowing I am going to make the wrong choice and before you know it, poof! There goes my betting $$$$. This weekend was way busier than normal, today I came home from work and went to sleep, my left side is throbbing from being flayed like a character on Game of Thrones.

Avatar universal
by Advocate1955, Oct 29, 2012
Norcos contain acetaminophin and hydrocodone, both of which are very toxic for your liver.  Our livers cannot filter these toxins.  Please be sure to ask your doctor which medications are best to take for pain relief.
Advocate1955

4043517 tn?1374010173
by mckansas, Oct 30, 2012
Lower acetaminophen, thus why he switched me. I have herniated discs in my neck, degenerative disc disease in lower back so I am already a walking disaster. My job requires me to walk a minimum of 5 miles/day, most days are 7-10 miles of walking that is spine pounding torture all day (I have a great chair at my desk when I can plant myself there for awhile:) but where I work is huge and if you can't do the job you are out and I certainly can't afford that right now so I would rather be pain free.

4043517 tn?1374010173
by mckansas, Oct 31, 2012
So my jackass of a GI dropped the ball, didn't send off request to KU Med Center for appointment, this took two days to find out. The nurse claims she faxed my records to them yesterday  and their hepatology review team looks at the records then will call me directly. If I don't hear back in a week, call her back. I am in such good hands I could just......

Life just doesn't get any better with these top notch docs in Wichita, Ks - insurance paid procedures is their game, they could care less about follow through or any intellectual curiosity regarding finding out what is wrong with a person. I've gotten more info from this board than any doctor, should have self diagnosed a couple of years ago since these local docs seem incapable of diagnosing/treating anything other than a broken bone. Bitter much? I'd have to say YES.

4043517 tn?1374010173
by mckansas, Nov 05, 2012
Chills, nausea, abdomen and shoulder pain horrible today. Too much stress, too much disease. I'm a lot sicker than I look, ha ha.

4043517 tn?1374010173
by mckansas, Nov 07, 2012
Finally, expecting call from KU med center tomorrow, they approved my financials - I guess that means I have insurance that will come through - so I will see some experts. Been feeling worse, I feel like I am the person who isn't there. I see doctors, they diagnose and promise, then I never hear from them again until I call and remind them. Hope this transplant/treatment center is more forthcoming than any doctor has been with me so far. Subpar care so far. Still losing around 5-7 lbs/week, the only thing I can keep down is crackers. I want to eat something decent, when I do it cause me grief so crackers, crackers, crackers.

Avatar universal
by Advocate1955, Nov 07, 2012
Mckansas,
We have to be our own advocates.  Our health and our well being depends on it.  If I remember correctly, you have several symptoms of decompensation, so yes, you are very ill.  I hope that KU's transplant center can get you in quickly.  If they can't, I would suggest reaching out to the forum and asking for the kinds of symptoms that might require an emergency room visit just in case.  For example, if you have a bleed, if you become swollen to the point of difficulty breathing, if you become very confused/disoriented....you may also want to let your family/friends know what signs to watch for that could be a medical emergency because you may become confused to the point that you may not realize how ill you are.
Take care,
Advocate1955

4043517 tn?1374010173
by mckansas, Nov 08, 2012
Thanks Advocate1955, us 1955's have to stick together! The only reason it has got to this stage is for two years the doctor never diagnosed my issue because I was overweight probably, now it's progressed so far it narrows my choices. I am not a big drinker, once a year around Christmas so I guess that's why I have harbored this virus since 1974-1975 with minimal symptoms.

4043517 tn?1374010173
by mckansas, Nov 09, 2012
The incompetence continues. Didn't receive a call yesterday from KU med center, called number and person I was advised to contact and  they didn't have a clue what I was talking about. Although they did have me in their files. I'm pretty sure I will be dead from lack of care by the end of next year.

4043517 tn?1374010173
by mckansas, Nov 09, 2012
After a flurry of phone calls back and forth, finally got an appointment, December 7 - a day that will live in infamy. Hope to find some information. Hopefully the doctor isn't reading my chart 2 minutes before he enters the room. That always gives me a warm fuzzy.

4043517 tn?1374010173
by mckansas, Nov 13, 2012
Ugggghhhhhhh, this last weekend was a killer. I hurt all over, extremely fatigued, can't think at all this week. This week and then 3 days, oh sweet vacation. I am ordering a smoked turkey from Yoder, I hope I'm not too late today. I realized Thanksgiving is just next week and I can't stomach the thought of cooking. My focus is building up vacation, 2.9 hrs/week. Hopefully by February I have an 80 hour cushion to start taking days off when treatment starts. If it starts I guess. I'll know more after the 7th I'm hoping. How can a person feel so discombobulated and function at work? Got to keep dragging myself in, that's all.

Avatar universal
by ejoli, Nov 13, 2012
Hey, who are you seeing at KU. I see Dr. Taylor and I like him a lot.   Gene from KC sees Dr. Gilroy and likes him alright. He is really good looking and has an Austrialian (sp) accent. I couldn't have him for a Dr. I'd forget to ask questions cause I'd be gazing at him so much. Dr. Taylor is a little younger and welcomes questions without me feeling stupid.     Let me know,    -Libby

4043517 tn?1374010173
by mckansas, Nov 16, 2012
It's a guy, looked on the site.

Avatar universal
by Advocate1955, Nov 19, 2012
mckansas,
Good luck with your appt on 12/7.  I hope you have a friend, family member, or significant other who can drive you (or were you planning to take your adult children if I remember correctly?).  Perhaps you would be able to invite that person to sit in on your appt with you.  Come prepared with a list of your questions, and have that person take notes for you, so you have some help making sure all your questions get answered and you understand everything Dr. Olson says.
You are in good hands now in a transplant center.
Be sure to let us know how you're appt. goes.
Advocate1955

4043517 tn?1374010173
by mckansas, Nov 23, 2012
yeah ok more great news, need to get a D&C or uterine biopsy, uterus too thick, opting for D&C as it would probably be inevitable I'd just need the whole scraping. Probably benign, no big deal, but I haven't had one piece of good news since February this year and expecting the worst.

4043517 tn?1374010173
by mckansas, Nov 26, 2012
stage 4 grade 4 liver damage, low platelet, my arms, legs torso look like I am in fist fights all the time. Feel like ****, now find out at 4PM before Thanksgiving I might have uterine cancer, let's get back to that torture chamber of insurance sucking callous mofos who don't give a crap about you, your pain, your willingness to continue. Always threatened, well, if you don't do this and make a decision right away then we just won't treat you, it's called informed consent, you will die without treatment, don't come crying to me. Wow, love to be backed into a corner by these number oriented, callous, superior acting doctors who talk to you like you are 10 years old, throwing out the fear treatment, blah blah blah. Screw it. I'lll go tt transplant center, but this latest BS with my uterus (again complaining of lower pelvic pain for almost five years. The advice I always get? Use KY like I'm some stupid 16 year old having sex the first time in my life. Sorry to be so angry, but honestly my daughter is the only one laying guilt on me to fight this, for what reason I don't know. I have always been active, don't drink, always smoke pot which I attribute to keeping signs of the disease at bay since 1974. Find out to get a transplant you have to stop smoking pot, well that's a deal breaker at this point. Midwestern, right wing christian superstitious, one size fits all diagnosis doesn't appeal to me. D&C or uterine biopsy my latest choice, nice choice. Screw it, they never control my pain, sick of it, sick of asking how I should feel, I finally told him last week I don't know how I am SUPPOSED to feel i only know HOW I FEEL and I am in pain. He supplemented my Norcos with a Butran patch, not sure it's working, but my daughter says I don't wake her with moans in the middle of the nigh and only take one hot shower in the middle of the night, down from three, so maybe it is working. Daytime, same pain levels, go back next week to report on this. What ever, it won't be cured, addressed, just more painful test and bad outcomes and lecture on "god forbid" I might be addicted to pain relief. This society and the political meddling into doctors business is just ridiculous, sick of this Taliban induced American society I live it. Too bad I'm 57 or I'd move to a socialist country where you are treated for your issues without the DEA sticking their big nose into everything a doctor recommends. What a country of puritans, moral monitors and regular political hacks..

4043517 tn?1374010173
by mckansas, Nov 26, 2012
Oh yeah, BTW, my son brought bakery hard whole grain rolls with walnuts and raisins, able to eat two of those a day with some hard goat cheese, took a bite o smoked turkey and ham, tasted gross. Tried a bit of pecan pie, puke it up, so there's that. Doc said try Prilosec, what a bunch of ****, felt even worse so another recommendation that doesn't work a ****. I am happpy, doing ok with Goldfish, hard cheese and the latest is hard whole grain rolls with my fruits and nuts in them. Did drop back 5 pounds again, but whatever. I feel sorta decent. Got to sell tools, wood sailboat and motorcycle this week to catch up on medical bills, pay my mortgage, due in four more days somehow, maybe someone will buy one of these items. Got tools listed, lots of Haynes books on auto repairs. Old chevy pickup bed trailer, good hitch, light rust,cheap, engine lift, man need help cleaning out that hell hole squatted in by my 15 year plus cheating husband who blames me for making too much money that it just emasculated him. He had to have an affair with dumbos, some little kids barely past 18 years old, he's 57 going on 58 soooooooooooo, what a ****. Let me in the lurch.Kids helping the best they can, but they are young and poor, just want love, not a big hassle.

4043517 tn?1374010173
by mckansas, Nov 27, 2012
So, I didn't call the gyno. Too much, too much, too much, too much to handle. Damn it all. On the other hand the Butran patch is finally kicking in, don't wake so much in pain in the middle of the night, only taking one hot shower to relieve the pain, down from my usual 4-6 every few hours so I guess it's working. The days are the same, pain all down the left side, stabbing pain in my upper right chest and back, limping by the end of the day. This is life?

Avatar universal
by Advocate1955, Nov 27, 2012
mckansas,
You have a very serious stage of liver disease.  Your liver is decompensated and is not working well.  It is not filtering toxins from your system well.  You've mentioned having ascites, digestive problems, and hepatic encephalopathy over several of your posts.  These are signs of decompensation.  Please find out from the hepatologist at KU what symptoms to watch for in terms of going to the ER, so that your kids know if/when you might need to go to the ER. It is most essential that you get to the hepatologist next week on 12/7.  He will be able to give you medications and help control some of your symptoms of decompensated liver.  He/she cannot reverse the damage to your liver, but he will be able to help control these symptoms to hopefully prevent your liver from failing completely.
As far as your uterus goes, I'm certainly not a specialist, but why wouldn't you want to have a biopsy to find out if you have uterine cancer?  If your gyne were to recommend a hysterectomy, why wouldn't you want to get one?  If you have uterine cancer, a hysterectomy could potentially remove the cancer before it spreads.  If you don't have cancer, you could reduce your chances of future gynecologoical cancer to zero.  I guess it would all depend on the reason for the uterine pain, but if it were me, I would get the biopsy if it were recommended to rule out cancer.
Have your doctors checked your gall bladder?  Your abdominal pain and digestive problems may be related to your gall bladder or possibly varices as well.  Do you vomit blood or pass blood in your stools?
Hang in there.  Your hepatology appointment is just a week away, and you will have more answers.  
It doesn't help to be angry at the past or angry at the doctors that didn't find things sooner.  Your kids need you, so you need to decide that you are going to live and you are going to get healthy.
Advocate1955

4043517 tn?1374010173
by mckansas, Nov 28, 2012
Check

4043517 tn?1374010173
by mckansas, Nov 29, 2012
felt ok, just tired last night, good news from Heartland perked me up. Went out to find more stuff to sell from shitheads and my stuff, ended up passing out in garage for unknown amount of time. My head has a lump so I must have smacked it good. I was swaying, held onto house as I made my way indoors then proceeded to vomit nothing for the next 15 minutes. I fell into bed about 8 I think, kids got home but I don't remember talking to them. Chance was upset this morning before I left for work, told me to stay home, but Jeremiah will cover for me today if I can't move. Just sitting here typing so far, feel dizzy, need to get some Boost or Ensure like the doctor said. I think I've eaten 2000 calories in the last five days so yeah I should listen, can't live by bread and goldfish alone. Haven't even eaten goldfish in the last week, just the hard rolls Cole brought. Easy on the stomach. I need to shape up and force myself to eat, I can barely climb those awful stairs at work, did it three times yesterday and that might have done me in, plus the overwhelming jerkiness of MS at the meeting. Several members came by yesterday and told me to get control over him, why is he leading the team now? Get him out, blah blah blah, I don't have the brainpower to argue with him any longer. **** I need some time off, but not now, have to make it through until I can finish paying the two lawyers this month. I don't know if I can make it, already attacked this morning, reallocation going bad, mixed it with a polished AAL unit, ****, now I have to get scheduling to release the R unit fast. The flipper gates are sagging on the third level deck, go find them and turn in the order ASAP. ****, Jeremiah won't be here for another hour. Why today? I feel so horrible.

4043517 tn?1374010173
by mckansas, Nov 30, 2012
Again, dizzy, tired and vomiting. Staggered (literally) thru the day, MADE IT. Shouldn't have been driving, very confused, tired. Had to go to pick up lower estrogen trioche, probably be told to get off them, the last thing giving me any quality of life, but oh well. Things have not and will not go right. Next Friday expect to hear how many things I will need to get off of. If no pain relief I'm hanging up all hope as I can't get thru the day without it. I curl into a ball, start taking tons of tylenol to ease the pain, but can not function in my job. We will see I guess. **** what a life.

4043517 tn?1374010173
by mckansas, Dec 03, 2012
My life has turned into Flowers for Algernon, I remember I once felt good, made decisions, had fun, did things everyday without passing out and sleeping off and on for 15 or 16 hours/day. This is ********. I am not living the life I want any longer.All this mumbo jumbo positive crap people want to post on your comments is annoying. It's not your life, it's my life.

4043517 tn?1374010173
by mckansas, Dec 03, 2012
Thought I was going to pass out, couldn't hardly walk, left work around 11:30 I think. Went to bed, just woke up. Ughhh. What is worng with me?

4043517 tn?1374010173
by mckansas, Dec 04, 2012
Slept off and on until 10PM, got up and ate some tootsie rolls, yum so good for you huh? Then proceeded to crawl back into bed and sleep until 3:15AM got up now at work. Ughhhh is this part of this disease? So so so tired, could sleep all day but then where would I be? Out on the street that's where *******.

4043517 tn?1374010173
by mckansas, Dec 06, 2012
Well I'm a mess this week, can't get enough sleep in the daytime, restless at night, taking showers, going to regular doc today to talk about Butrans. It's like an Ibuprofen I guess, keeps it controllable, still counting the Norcos though. Still nervous I'm going to run out. Friend gave me a valium to calm me down, now I look like a drug addict if they test me tomorrow. Oh well. Nerves, valium, cigarettes, going to hell lately. I need to calm down. Days are so hard to get through, can't think, can't force myself to do anything. Cut my arms up again taking pictures in the hell hole, damn, should start wearing long sleeved shirts, but I get hot/cold all the time. No temperature regulation. Next Friday, the 14th I go for the D&C, ****, my weekends are always shot. Got a listing yesterday though, maybe I'll sell something, damn. Could sure use it.

4043517 tn?1374010173
by mckansas, Dec 10, 2012
OK, got lactulose or something for my ammonia stomach, supposed to poop five time a day!!!!! Ha, I manage one a wekk, but it's making me fart so there is that. I had a full blown stupid accident Thursday, thought I was pulling into my driveway, but nope, pulled into my neighbors front end. I was so slurry and out of it they took me to the hospital, told me not to drive, called my doc and I guess I got released. Whatever, went to KC Transplant center. Liked doc, but my daughter write it down. I go for a three day mental and physical evaluation in a month, probably flunk, cause I'm so ****** in the head, ha ha.

I couldn't work today, went in early, couldn't take it, can't think. I need the money, I don't want to be homeless.

4043517 tn?1374010173
by mckansas, Dec 12, 2012
Did I say I had a wreck? Anyway can't type or talk very well. Looks like he'll treat me.

4043517 tn?1374010173
by mckansas, Dec 18, 2012
ha ha got out of that D&C, until later discussions exist.

4043517 tn?1374010173
by mckansas, Dec 22, 2012
Know what's cool about hep c? I am now thin! ha ha, can't be too rich (no worries there) or too thin! Not too thin, but man Goodwill just got some purchases from me! I'm 6 ft. tall, hard to fit, but not now my friends, not now. Ha ha.

4043517 tn?1374010173
by mckansas, Mar 14, 2013
The thing about ESLD is it isn't that difficult for you the infected, except the pain and cramps of course, but they can be dulled through medication or other holistic choices I suppose, but it's the worst for the caregiver. I don't know when I slip in and out of these HE episodes so it doesn't bother me, I only hear the results of an hour, a day, a weeks loss of memory and the thing I  ha ha, did and said. It's awful, I feel so sorry for those of you taking care of us, but we are grateful when we're aware, but sometimes the normal times seem to get further apart. So sorry for making you have to do this, I am grateful, I just don't remember. What happened to antique glass compote? I fell and smashed it? When? Why is there dogfood in the freezer? Sheesh Mom, you did that. When, why? What day is this? Damn, I'm sorry. Take away my keys please, I did, you yelled at me and tried to pin me down. I think I need tie-downs, I'm so sorry. I'm so sorry.

Avatar universal
by Advocate1955, Mar 15, 2013
mckansas, it isn't your fault that you're ill.  You don't deserve this illness, no one does.  It is a terrible disease.  You've done so much in the past few months, you've acknowledged your diagnosis, found a good specialist, gone to the right place, you're treating your HE and other symptoms correctly, you're advocating for yourself and you're ready for what's coming next, a life saving liver transplant.  We care about you and believe in you here on the forum.  Hang in there.  You deserve to be well.

4043517 tn?1374010173
by mckansas, Mar 16, 2013
Well it is my fault, stupid decisions in the 70's. So strange as after those wild times I always tried to eat right, drink filtered water, raised my kids, but bad decision at 19 has doomed me to this slow decline. Always worried about my heart and diabetes because of my mom and grandmas health, but it's always the things you don't plan for that bite you in the butt. Thank goodness for my kids being patient with me although frustrated, it's hard to give up things like driving, making monetary decisions when I feel OK like this evening, but I know I'm totally unreliable now. My daughter and I went out and she advised me on some cool new shirts to fit my skinny bod and she bought me my first bra from Victoria's Secret:) Never thought I'd fit into one of those, always tall and chunked out after the twins arrived, so that has really made me feel good about myself today even though I am a training bra size 'A' cup! Hope all is well with your husband, what a crappy disease to have although better than cancer I guess since there is hope if I get a new liver in time. The doc said that is the crappy thing, you don't get a liver until you are so sick it's dangerous for the transplant, you're at your weakest, it would be better to get it while you are in relatively good fighting health, but livers don't grow on trees, someone has to suffer and die for us cirrhotics to live, a troubling thought.

Avatar universal
by ejoli, Mar 17, 2013
           I know what you mean about the stupid decisions in the 70's......  My daughters were shocked when I had to tell them where I got this **** from. I never did anything after my teens, got married and raised kids also. But I don't blame anyone but myself.  Oh well,  too late now.       Take care mckansas,     -Libby

4043517 tn?1374010173
by mckansas, Mar 17, 2013
Perhaps we crossed paths, but we wouldn't remember each other now 'eh?

1856494 tn?1340546214
by libzo2, Mar 17, 2013
Dear Mckansas,
You are a voice of courage.  One of your last sentences, out of context:  "but livers don't grow on trees, someone has to suffer and die for us cirrhotics to live, a troubling thought".  You really touched my heart by your nurturing and selfless reflection.  It showed your true heart and you are amazing.  Orphanedhawk got her transplant from her daughter in Thialand, I believe.  She may give you an angle to raise more hopes for you and your amazing daughters.  There are so many of us here in the Hep C shawdow and may not respond online to you but we silent watchers are praying for you in our own manners.  You are not alone.  

4043517 tn?1374010173
by mckansas, Mar 22, 2013
Been so tired these last few days, barely eat,  forcing myself to for my own good, just like showering and getting dressed,  keep up the appearance of caring about myself. Just have to say again this disease *****. Sleep,  up,  can't. Concentrate.

Avatar universal
by Advocate1955, Mar 23, 2013
Sorry that you're feeling so ill.  You're right, this disease *****.  I hope your kids are helping you out at home.  Didn't you see your hepa a few days ago?  Any movement up on your MELD score?  Are you getting closer?
Advocate1955

4043517 tn?1374010173
by mckansas, Mar 25, 2013
MELD 15, just can't wait to feel worse.

Avatar universal
by Advocate1955, Mar 26, 2013
Geez.  I think you said it's 21 in Kansas?  A ways to go..Hang in there.
Advocate1955

4043517 tn?1374010173
by mckansas, Mar 30, 2013
Accidently missed 2 days of Xifaxan and started falling by the second day, hands shaking/twitching when I stretch them out. My gut is starting to expand, hard drum feel. Future ascites? It just keeps geting worse doesn't it? Trouble staying asleep, waking up drenched in sweat. Don't miss your medicine folks, keep it under control, stupid mistke.

Avatar universal
by Advocate1955, Mar 31, 2013
When my hubby was on triple therapy with Incivek, there were a lot of pills to take at very specific times. I got him a new cell phone, a very basic one, but it had a pill reminder function. I set alarms that rang the same time every day and didn't need to be re-set each day. I could even take pictures of each med and list the name and dosage to help him remember which to take with each alarm. So the reminder popped up with the pic, name, and dosage when the alarm rang. Then I set up a big pill box with four separate boxes for different times of each day. That seemed to help so that he wasn't Kate and didn't miss doses. The only problem was no matter how loud the alarm, it didn't always wake him up, so I still had to set alarms on my phone and call him to check to see if he woke up and took it.
Advocate1955

Avatar universal
by rivll, Mar 31, 2013
You are an amazing wife and advocate, Advocate1955. Wish we could app you!

mckansas, that is really scary.  It seems to me with those symptoms your MELD might have gone up. Do they do monthly labs?
Hang in there.

4043517 tn?1374010173
by mckansas, Apr 01, 2013
We went out of town and I forgot to bring them, but pics to have and alarm is a good idea. Doctor said just go back to regular dosage,  give it a week

Avatar universal
by Advocate1955, Apr 02, 2013
Ha, ha, rivll!  I don't know if my hubby always feels that way!

mckansas, the phone that I got him was a very basic phone, not a smart phone, but it was the only one I could find that had this super pill reminder function.  It was a Pantech Breeze II or III, can't remember which, but the pill reminder function was great for him.  It allowed him to be on time and accurate with his medications, and allowed me to be at work during the day (he works nights) and not worry about him missing medications.  Other than that unique pill reminder function, it is just a very basic phone.  He couldn't remember the names and dosages of all of his medications, so being able to program in the name, the dosage, with a picture of the pill really helped.  Also being able to program it for multiple alarms every day and not have to re-set it each day was a huge time saver.  It also had a snooze function, so if he fell back asleep, it would ring again in a few minutes with a louder alarm and a flashing photo of the particular pill(s) that he needed to take.  The pill box really helped too because when he couldn't remember if he took his pills or just cancelled the alarm and fell back asleep, I could go look in the pill box if I was at home, or call him, wake him up, and have him go look in the pill box to see if the pills for that time were there or gone.

Glad to hear you're back on your regular dosage of Xifaxan, and hope you're feeling better soon.  I think the hands shaking/twitching is one of the symptoms of the HE, isn't it mckansas?  I have read about that before.  I think I've read about it described as flapping hands.  Is that the same thing?

Advocate1955

4043517 tn?1374010173
by mckansas, Apr 02, 2013
hands shaking/twitching are signs of HE, depressing it comes back so fast just missing a few doses. Only slightly shaking today, but my daughter is worried I'll go full blow into my dysfunction of December as she's going to California for a week in May with a friend. I don't want to ruin her trip. Neither of us knew what was happening in December, never knew about the HE thing. I'm lucky my bones are strong with the amount of times I've fallen in the last several months, she said I pulled the huge beveled antique mirror on the vanity onto myself at one point when I fell. Weird I don't remember too much of anything, just bits and pieces. Your husband works? My doctor won't let me, hence the ss application, but then again whenever I do anything remotely strenuous anymore I have to lay about. Sometimes I sleep a lot, other times, last week or so, insomniac.

Avatar universal
by Advocate1955, Apr 03, 2013
Yes, he works full time, and also worked throughout all three of the therapies that held tried and failed. He isn't as I'll as you are mckansas. His liver functions are good, even though he has cirrhosis. His liver is compensated, which means still able to do its important functions, na ascites, no varies, no portal hypertension, and no HE. The more the cirrhosis progresses, the more fatigue he has and some skin spots. He is in a six month schedule to see his hepa to check labs and screen for cancer. Glad your med is helping the shaking/twitching. Don't you have a son as well?

Avatar universal
by Advocate1955, Apr 03, 2013
Wow, sorry for all my typos. Was using my cell phone, and auto correct does strange things. Hope you can decipher.

4043517 tn?1374010173
by mckansas, Apr 03, 2013
I can read your post just fine, auto correct is a pain, it jumps to crazy conclusions! Shoot, so I have HE, portal hypertension, probably ascites on their way as my stomach sometimes gets so expanded. Can't wait. I have two sons, one lives in Lawrence trying to complete college, the other is a twin to my daughter but has always deferred to his sister doing the hard work. He's rather self absorbed, but who wasn't at that age? He would rather leave all this up to his sister, it's easier, my other son never has time to do much other than work/study. I used to be able to pay for him to come home every once in a while as he can't miss work (has two low paying jobs), now I only get talk to him weekly, text him daily usually and stop by on the way to/from KU Med. All good kids, too much pressure from my sickness for them being so young, plus the fact their father fulfilled all their nightmares as to what a self serving ******* he truly is. I was blind as they have pointed out.

Avatar universal
by Advocate1955, Apr 03, 2013
Ah, 2 sons and 1 daughter, with one son and the daughter being twins.  I think you have been a busy mom for 20+ years, like me!  I have two (one son age 22 turning 23 next month, and one daughter age 20 turning 21 in August).  One in college and one just graduated college.  Both good kids too.  Sounds like you've raised three good children despite their father!  Good for you.  They are lucky to have you.  Kids are more resilient than we give them credit for.  They will be there when you need them, I think.
You may have been blind before, but now you can see!  :)

4043517 tn?1374010173
by mckansas, Apr 03, 2013
True true,  my twin son would rise to the occasion if necessary, he just doesn't deem it necessary with his sister handling things. You haven't been a slacker yourself,  nothing like kids one two years apart keeping you going for years. Mine are 25, w23,  23 so we are close in child age. Older parents are more tired ha ha.

4043517 tn?1374010173
by mckansas, Apr 06, 2013
Feeling spiteful and disconnected, would like to write my "brothers " and tell them the truth about the last year of our mothers life and how they were not there for her and now me, but what good would that di other than hurting them and giving me some spiteful glee. It wouldn't penetrate their thick heads anyway,  but I want to do it despite....somehow fell down and ripped my finger open,  bleeding like a stuck pig and when asked what happened I have ni idea as usual.

4043517 tn?1374010173
by mckansas, Apr 06, 2013
Of all the creatures, man is the most detestable. Of the entire brood, he is the only one that possesses malice. He is the only creature that inflicts pain for sport, knowing it to be pain. The fact that man knows right from wrong proves his intellectual superiority to the other creatures; but the fact he can do no wrong proves his moral inferiority to any creature that cannot. Mark Twain.      I post this because my daughter and her friend did a middle of the night commando run to free a poor bird dog kept on our old property by a creep who was literally starving the sweetest half German haired pointer female. She is skin and bones, we saw her cooped up when going back for our belongings and she had no water or food. We went back the next day and snuck in food,  gave her water and plotted.  My daughter brought her here a few days ago and it looks like they had used her for bb gun practice, she cowered at any loud noise,  she looks like they kept her pregnant and used her. So sad we all cried. Now she has acclimated quickly to kindness and after a couple of accidents she goes outside to do her business and cant believe food is always available. We're getting low income spay done in a couple of weeks and my oldest son wants to adopt her. He desperately wants a dog and we're having a garage sale to raise his $200 deposit needed. She loves to stalk the squirrels and birds as they taunt her and Louie,  our Weimereiner and she finally barked for the first time yesterday. Maybe that's why I'm in such a weird state wondering why people can be so cruel. We named her Molly and she is such a great dog,  how, why??? 30-40 more pounds and she will look sassy! Don't worry,  the digs have zero chance of catching anything in the backyard, the squirrels seem to enjoy teasing them:)

Avatar universal
by Advocate1955, Apr 06, 2013
Are you doing OK with your HE meds?  Any missed doses?  
Have you had a sit down conversation with your three kids to really give them all of the facts about your ESLD, the symptoms your experiencing, the importance of the meds, the diet, and the doctor appointments, and that the future holds a transplant?
I think maybe all 3 of your kids need to learn as much as possible about ESLD.  Allison1965 posted a great video over on the Cirrhosis of the Liver forum that might be good for your kids to watch (maybe you shouldn't watch it though).  Does your liver transplant center have caregiver classes that all 3 of your kids could possibly take?  I think that somehow you need more support, and it isn't going to be from your brothers, so it will have to be from your kids, but perhaps they don't have a full enough understanding of the ups and downs of this disease.  Perhaps they could rotate care giving time amongst themselves so that you have someone with you the majority of the time to help with your meds, water, meals, etc.  
Maybe your kids could read and post on the Cirrhosis of the Liver forum and ask questions there.  Perhaps they could receive some support from other forum members there.
Advocate1955

Avatar universal
by rivll, Apr 06, 2013
So sorry mckansas.
It takes  a certain strength to see one's loved one through sickness and suffering. It is something the men in my family have not been great at either. I think there is a reason that females are mothers and caretakers, generally speaking.

Embrace those who are man and woman enough to be there for you. Let the others go.

Prayers and hugs

4043517 tn?1374010173
by mckansas, Apr 15, 2013
From the Writer's Almanac the other day:

The Undeniable Pressure of Existence by Patricia Fargnoli

I saw the fox running by the side of the road past the turned-away brick faces of the condominiums past the Citco gas station with its line of cars and trucks and he ran, limping, gaunt, matted dull haired past Jim's Pizza, past the Wash-O-Mat, past the Thai Garden, his sides heaving like bellows and he kept running to where the interstate crossed the state road and he reached it and he ran on under the underpass and beyond it past the perfect rows of split-levels, their identical driveways their brookless and forestless yards, and from my moving car, I watched him, helpless to do anything to help him, certain he was beyond any aid, any desire to save him, and he ran loping on, far out of his element, sick, panting, starving, his eyes fixed on some point ahead of him, some possible salvation in all this hopelessness, that only he could see.

Avatar universal
by rivll, Apr 15, 2013
OMG. Heart wrenching.

4043517 tn?1374010173
by mckansas, Apr 18, 2013
Yesterday I learned from my daughter who's BFF works at the only pain clinic in my town is continuing more despicable behavior. I am supposed to keep quiet after finding out the doctors there conduct illicit affairs with staff members, talk disparagingly about patients, but this event.........well, I'm sending an anonymous letter to the regulating agency in my state to investigate. On Tuesday this week a former drug addict who is HCV positive came in for their weekly useless injections to alleviate their pain and right after this occurred the next patient, an innocent, looking for for some pain relief was injected using the SAME NEEDLE JUST USED ON THE HCV PATIENT!!!!!!!! The staff was called and told to keep quiet about this event as they had advised the innocent they should probably get tested for HEP C. The innocent appeared confused says the BFF, asking why? The doctor and nurse said it's just something you should do. The staff is under threat of their jobs. My daughter advised her BFF to get the hell out of there, get a new job and report this immediately. Don't know if she will. I did however print out the form to report this on and it's in the mail as we speak, but since I'm a third hand knowledge I reported it as anonymous. Not only are these injections a scam, they offer no more than temporary relief and questionable use for liver compromised patients, but are touted by our narcotic squashing police mentality as the cure for pain. I am disgusted not only by the breach of behavior in this clinic, i.e. talking about patients like they are non humans, but the disgusting behavior of the doctors preying on the staff via sex, gifts and now a life threatening condition that is so slow moving this poor innocent will not remember where they even contracted this horrible disease in 15-20 years. This place is probably indicative of many clinics that run their mouths about patients, not unlike small town banks talking about their neighbors who bounce checks or have other financial difficulties. It just makes me even more sick thinking about this. No wonder I have no respect for doctors and their ultimate motivations, greed, sex, gossip, etc. I found out they used to have a kidney transplant center in this town, but had to shut to it down due to the high number of deaths from their lousy care. The only doctor I have had respect for is my hepatologist and would be devastated learning this facility conducts this type of shoddy cover up and inter office sexual encounters, but what I don't know doesn't bother me as I justify this in my brain. I believe this facility has a higher standard, but then I would think advanced pain management facilities would have these higher standards and look what I have learned. I am disturbed by this, am reporting this, but ultimately will anything be done? I don't know. I do know on my next appointment to my PCP I will reveal this new bit of information to him regarding the transfer of HCV to an unwitting patient and the in office cover up actively undertaken by the doctors and staff. The nurse should have been immediately fired and this event reported, but NO, they decided to keep raking in the money for their useless injections and speak harshly of the innocent, saying ha ha she will never know where she got HEP C, isn't this hilarious? The stupid drug addict infected the patient----NO, YOUR STUPID STAFF INFECTED THE PATIENT AND YOU ARE COVERING IT UP. I am so angry about this, the system that allows it, the idiots that have abused narcotics and die who have caused the multitudes of pain restricted people to have limited quality of life because they scream the loudest when their stupid kin OD from script doctor facilities compromising good doctors who are just trying to help their patients live a better life pain free. Just so angry. I already told my PCP I wouldn't go to this place because of the extra marital affair I knew one of the main doctors was conducting and the prescriptions he wrote to his emaciated girlfriend for phentermine. Can't be too thin, right pain management doctor? Is this why your wife is no longer desirable? I mean you knocked her up for the third time and she just had your child. Not good enough for you? Damn Y chromosome dictates some stupid behavior, now dictating the entire staff of this facility by the founder to cover up the transfer of HEP C to an innocent patient. Arrrgggghhhh, just so angry over this. Not many know of the devastation of HEP C, I for one didn't until it hit me square in the face and I'm dealing with it. I always thought, big deal, don't they have a cure for it, like HEP A of something? Ignorance is NOT BLISS. Too bad there isn't a god to wreak vengeance, there are only regular people who report this behavior and this takes years and may never come to fruition.  If I report this recent cover up to my PCP will he be obligated to report this to the board of medical regulator also? I only know the doctor and nurse name, don't want to reveal the BFF name as she is obviously disturbed and I hope she reports this also. You do the right thing, but many times suffer financially from this decision. I know as I did this as a Quality Engineer and was rewarded by getting fired.

4043517 tn?1374010173
by mckansas, Apr 18, 2013
I shouldn't be, but.....

horrified, shocked, stunned, alarmed, frightened, scared, terrified, outraged, dismayed, daunted, astounded, unnerved, disquieted, petrified, disheartened

Avatar universal
by heart_in_the_keyes, Apr 18, 2013
Oh mckansas...I see the same thing...it is what you said above....  Having worked in the ER until I couldn't tolerate the callousness of it...I see the following: and let me put this disclaimer in front of all of this but it only takes one rotten apple to spoil a crate..  I have good and bad.  I get furious and frustrated that I can learn more from this website than I can from my care givers. They just seem to think that you have to accept whatever they are saying or doing as correct and many times it is not.  I know in the ER I did things that I hadn't been trained to do.  I'd have the doctor telling me what to do and thank God I had enough wit and intelligence to pick it up but was that right?  No. And they keep cutting back affecting seasoned workers and then a month later they are doing a massive hiring wave of newbies who have no experience.  It's crazy.  

When I first started going through clinical trails 20 years ago I was taken back that they didn't have you keep track of certain things. Of any thing.  I would think a daily journal would be helpful if they are really trying to resolve the whole issue.  Having worked in the corporate world too if we did a trial, we documented the participants.  No one really does that.  I thought getting ready for this tp that I would be given more info.  I am alarmed to be racking up all this doctor bills getting prequalified for it when I don't even know if insurance will pay.  It assbackwards.  Do the financial first, then the tests.  Why put a person through all of this, they do could on all the prelims and then they are denied.  What's the point of that?  The stress of some of the tests....the false hope...the emotional ups and downs.

And as for crevices in the hospital....if an associate doctor hadn't misdiagnosed me 4 years ago I probably could be HCV free right now.  And then my liver may not have gotten as bad.  Would of;s, could of's.  I'll never know and I am just so freaked out to have a tp in the first place.  It seems to me that the doctors focus on thing that is important to them instead of looking at the whole picture.  And I can't begin to tell you how the clinical coordinators, much to the frustration of my doctor, kept screwing up on my authorization.  I really think that the hospital should pick up the whole tab for this due to their continued incompetency.  

I read what you said about that clinic and I believe every word of it.  I've seen it.  Cover ups.  4 years ago due to negligence of the hospital staff after my sister had a bariatric by pass and had to return to hospital and then died.  I was with her during the days...her husband at night.  If we hadn't been she could have just sat in that room neglected.  The
nursing staff was awful.  His brother is a pediatric heart surgeon who is pretty known and after looking at her records he encouraged him to sue the hospital and the doctor.  The excuse that was Easter weekend and they were short staffed while they sat down at the station laughing and chit chatting just didn't get it with me.  It's been almost 4 years and the hospital is almost ready to settle.  Their neglect cost a very large family to lose their mother, grandmother, sister, daughter and wife.  She was 49. She had the biggest heart.  Wanted to be a nurse.  She would have been one of the good ones.

I am stage 4 w/decomp liver and I take that Xifanin.  God it so expensive.  I was going to do a post if anyone had a ballpark of what the drugs will cost me after the tp.  What's it all for if I can't afford them.  My left hand shakes...had for years though every since I did all the trails....had such adverse reactions to interferon.  Now both hands will sometimes do it and there are moments when I am trying to focus on something I will start the flapping hand thing.  When my puppy sees me do that he become a piece of Velcro because he knows something is wrong.  

It is a mystery to me how evil people survive and givers don't....  I do the face painting too.  Sounds like you have fun doing that.  Kids love it.  Just volunteer through the art center in town and if there is an event in town will set up a chair and start painting stars and daisies.  Be careful on that bike.  Wish I could work.  I sleep way to much...not because I want to but just like now I could be typing this and I'll nod off with my hands on the keys....employers just don't like that much.  If I get a standing job I can only be on my legs for about 4 hours due to bad knees and feet...the curse of the ballerina....and 6" high heels......15 years of bartending in them surely didn't help...LOL.

I think you have to follow your heart and as long as it doesn't create a lash back at your daughter. I also know that the constant hardness of the job sometimes makes the person hard.  Firefighters, policemen, ER workers that I have known all have had a real zest for the abnormal and the dangerous as odd as that sounds...like I said...there are good ones too but I must have just run into several wild bunches of these groups over the years.  Hardcore.  That's what I had to get out of it.  The day the guys set up to go prep a person for the morgue who had been in a motorcycle accident and I went into to the room and thought wow why does he still have his helmet on.  I removed his shoes. His belt and rings.  Then went to get that helmet off and his whole head came off in my hands.  He had been decapitated.  I was so freaked I couldn't even breathe but all of sudden I heard laughter and the curtain came back and I had been set up.....nothing was done to those guys.  But I quit.  Now I know I should have sued on behalf of the patient and myself.  

And you know the thing about the support...people will say oh that is awful...but that's about it...because to do more is to accept more responsibility. Or worse yet, they really don't think that you are that ill because you look okay...Like me...just recently stopped working because of merger not me...otherwise I'd still be working.  I drive.  I volunteer.  I take an art class. I cook.  So until I am flat in a bed I don't think it will sink in.

4043517 tn?1374010173
by mckansas, Apr 18, 2013
Thank you, I know there are decent people out there, but it is so appalling when it slaps you in the face. I can't get out of this nightmare of HCV/cirrhosis/HE and have to deal with the knowledge this is going on. So callous, so unbelievable that people love a good yuk or profit at the expense of suffering. I only hope these people get the tables turned on them, but paybacks may (probably) never come. Suing gets some monetary relief, but no mental relief from the loss of a loved one due to incompetence. I am so sorry your sister became another statistic of this austere profession-I joke since as we know it's not so austere when you actually work within the system. When my mother had DNR instructions and she fell into a coma the idiots at the care center believed this meant no water either, I was chastised for providing a sponge filled water relief to her as she surely suffered those last few days, but I still did it, still held her hand and was there for her last breath. My own brother told me to go home and let the center call me when she died, so to say the least we haven't spoken in 10 years, but this pain will never leave me. Incompetence, uncaring, gossipy, users of the first degree and it shouldn't have surprised me a facility would cover their ***** after infecting an innocent with HCV. I dropped my anonymous complaint in an unmonitored (I hope) mail box, but who knows? If they have enough influence I may be the one targeted as a psycho who would report this upstanding agency. They seem to be able to trace mail no matter where it comes from, not to mention me posting this on this site, but as you have said, I get better advice and more support from people here than the medical profession itself.

Avatar universal
by heart_in_the_keyes, Apr 18, 2013
Good for you...doing that complaint.  People always think people who are the warriors are crazy...if no one stands up for ethics and morality....my family tells me I am wasting my time when I am researching different things or looking into things that I have no control over...I may not make signs and march the streets but try to reach out to people to make them think.

Payback. My religious friend tells me I must forgive to go forward. I have 99.9% but it's hard to do.  I do believe in karma.  Sometimes it happens to that person or persons that they love are affected.  I'll tell you another one of my crazy tales.  I worked for this large company.  I was divorced.  Ex didn't pay support. 3 kids 7, 5 and 3. My boss was always out of the country. He told me that he didn't care when I came in since his hours were later being overseas.  The ego maniac office manager didn't like that.  He fired me. My boss hired me back.  This went on a dozen times. My boss left the company and the office manager descended on me.  Odd thing.  4 years later when I was applying for a job I went to work for an employment agency owned by his ex-wife.  She thought he was a complete A and the first thing upon hiring me was to call him.  That was one.....two was many years later when I working as an EMT and we went on a massive wreck and guess who was really, really hurt.  As I was helping put him in the ambulance he looked at me and the horror that washed across his face was worth it.  I told the other EMT he would have to take care of him and I went on to someone else.  

These drug companies that are holding back on the drugs that could cure all of this are animals.  All over money.  

Isn't that amazing how they can track mail.  Those poor people in Boston do not have a definite resolution yet but they were able to catch the Rican guy.  How did they do that?  Surely he took precautions.  Big brother is just so scary.

Yah I had an experience today that I had emailed tracphone about my no contract phone and a problem I was having with it and about an hour later there was an email from ATT and Sprint offering no contract plans.  Creepy. They are probably watching me type right now or through the TV.  They must be very, very bored.  LOL.

4043517 tn?1374010173
by mckansas, Apr 21, 2013
Time for employer updates and fear, confusion and frustration hits me up all over again. I start to argue I can go back to work, my daughter says why do we have to have this same conversation every week? I wish you would go back to work for 8 hours and get it thru your head you won't make it. You can't even ride the stationary bike for 30 minutes without laying down for hours complaining about your pain, which is true, but I then tried to mow the yard, got spasms doubling over, she took me back inside. I am so frustrated, there isn't a zen moment where I don't have this constant throbbing in my ribs, feel like someone has punched me in the back, shoulder/neck burning I have to hold my left arm close to my chest to keep it from driving me crazy, constantly waking after 15, 30 minutes of sleep. Sick of being sick, used to be about a 2-3 constant pain no matter what, now rising, it just wears me down. I just don't think I could take treatment even if the hep finally said yeah, let's try this as everything I read just seems to amplify these feelings even more. Insomnia was good for the Boston bombing chase, watching reddit, twitter, etc. all night was engrossing, finally slept about 2 solid hours before waking around 6 am, maybe need that kind of mental stimulation to get me to nod off for extended period.  such a complainer, but I am such a wimp I guess.

Avatar universal
by Advocate1955, Apr 21, 2013
You are not a wimp.  You are a fighter.  You are struggling with all of the terrible symptoms of ESLD.  It sounds like you're very worked up emotionally about a lot of things right now, the incident at your daughter's friend's clinic, the Boston bombings, and your own health/work situation.  None of this is helped by insomnia and pain, obviously.  I don't have any words of wisdom or advice to offer, other than do the best you can do.  Lean on your adult children.  Let them help you.  Tell them that you need some help getting your mind off of the things that are causing you so much agitation right now.  Clearly you are a very bright woman who looks for and enjoys intellectual stimulation and is very knowledgeable about many things.  Can you force yourself to read, watch documentaries, write, or take an on-line class in a topic of interest to you that isn't as likely to add to your anxiety/depression about your health and other world events?  Chronic illness and pain can lead to depression, and people can go into very dark emotional places when they are fatigued and in pain.  Try, if you can, to find a way to pull yourself into a lighter place.  One of our forum members mentioned one time that she spent quite a few months watching documentaries and taking on-line classes to distract herself from the anxiety and depression that she was feeling.  Another forum member said that she and her husband started a blog to document their experience through writing and photos, in the hope of helping others.  Another forum member has become an advocate for Hep C testing and for newly diagnosed patients.  If you can find a way to channel and redirect your feelings of fear, anxiety, frustration (or whatever feelings you may be experiencing) into using your obviously brilliant mind and skills for something intellectually stimulating and positive, maybe you can get back some more positive spirits and perhaps that will help you with managing your chronic pain a bit more.  When do you see your hepatologist again?  My hubby sees his hepatologist in May, at which time I believe he will have more labwork, another ultrasound, and an appt with her.  We continue to hope and pray that his liver is still compensated, that he doesn't develop liver cancer, and that an appropriate trial or a new Hep C treatment will come available to him soon, but as usual we always start to get a little anxious before his 3-6 month follow ups with his hepatologist.  I wish my two adult children would go into genome sciences and work in medical research and find cures to diseases like this.  My son just graduated with his B.A. in Math, but I don't know yet what he plans to do next.  My daughter is finishing her sophomore year, and she hasn't declared her major yet.  She hopes to major in Biology and then later do a graduate degree in microbiology, but she struggles with some of the math, physics, and chemistry that is required for the Biology major, so I don't know what she'll decide when it comes time to declare. She seems to be more of a natural sciences/natural history girl at the moment.  She volunteers at the museum at her university, working in ornithology, and she loves taking photos of birds.  She also volunteers at the children's hospital near her university, mainly just helping people find their way around the complex facilities.  She isn't really a people person, not very social, so it's good that she's meeting and talking to people in both of these volunteer opportunities.  Lean on your adult children, mckansas.  Tell them how you're feeling and ask them to think about what might help you.  The mental challenge is just as great as the physical challenge.
Advocate1955

4043517 tn?1374010173
by mckansas, Apr 22, 2013
Thanks

4043517 tn?1374010173
by mckansas, Apr 25, 2013
so, got letter today from SS that I'm denied. They had my occupation wrong, said I was A-OK with medication and I should get back to work. Contacted hepatologist, should I get back to work, emphatic NO, said it's normal to be denied the first time through, appeal, so I did, we'll see. I pointed out I was disabled per their own definition in the guidelines, they had my occupation wrong and what else do they need to know other than I'm stage 4---Cirrhosis, what is the definition of that? Also HE, Hep C, asterxis increasing, damn. Well, we'll see. I didn't contact a lawyer, maybe I should but the facts should speak for themselves and I don't want to give up anything to some jerkwad lawyer, although maybe I should, whatda think?

Avatar universal
by Advocate1955, Apr 26, 2013
I think it is not unusual to be denied the first time.  Hector has written some threads about SS before that have been very helpful.  Do you have a letter from your hepatologist that you could include in your application?  Maybe if you use the term End Stage Liver Disease as well, maybe they will understand.
Advocate1955

4043517 tn?1374010173
by mckansas, Apr 26, 2013
No, they just request records. Spoke with him, he said they don't place statements in the record, but if requested by SS they will respond. I don't understand if SS only requests records how you get them a statement. I guess I'll check Hectors info.

Avatar universal
by Advocate1955, Apr 27, 2013
Sorry, I don't know a lot about SSDI. I work with special needs students, and sometimes their parents have to apply for SSI or SSDI for them due to their particular disabilities, but I know Hector does.  You might send him a private message and see if he can share information.  I see that he's posting and on-line today.


4670047 tn?1375734001
by mzkity, May 04, 2013
I don't know if this is a posting pace!! But here I am. Thanks for being a friend. I have to tell you I admire your keen eye for the world around you!! I very much realize how sick you are! But when your on you sure do tap into everything around you!! I just love the bird pics.. Very fun! It's hard for us as humans to see the sad side of the reality. But we have domesticated everything we can in an effort to comfort ourselves or block us from the outside world.!!
See your a mastiff lover, was going to be my next dog but don't know if I can do it. There such big kids!!!!

Well I'm being told to get a move on. We're off to a special needs camp for the granddaughter, she has spina bifida. Ok she's yelling at me. She's an absolute sweetheart, but were working on independence!  Lol!     Have a great day!!  Kitty

4043517 tn?1374010173
by mckansas, May 10, 2013
Holy ****, just woke up sweating and crying from a nightmare. I was at work and they had squeezed so many machines in the aisle was like a maze with overhead hooks moving, conveyed belts on the floor,  hit steamed water bubbling and I couldn't figure out where to step or move. Stuck in the midst, saw my coworkers yelling at me how to time my jumps,  but I was petrified,  sat there crying knowing I was going to get crushed or drowned. Couldn't move,  woke up sweaty and crying,  don't want to try and sleep again. Just made myself some tea, trying to calm down. It was awful. Damnable. Freudian? My life is out of control, worried about everything I guess,  helps to write this down. No one is home right now to talk to but I can still feel the steam blowing spurts towards me.and the moving hooks. Damn I need a cigarette or something but the tea is starting to help. Is this normal? My heart is starting to slow down finally. Had nightmares lately, but this was the worst. It was so noisy I was screaming but no one could hear. All my coworkers just laughed as they told me what to do,  then they left.***** and makes no sense. I had read my hepatologist report today that I got in the mail, guess it wormed its way into my subconscious and manifested into my lack of control over my health. Calming down more now,  **** it was so real. I did take my mess, haven't skipped any just scary. Damn


4043517 tn?1374010173
by mckansas, May 10, 2013
Nodding off,  go with the flow,  sleepytime tea will keep me asleep dream free I hope.

Avatar universal
by heart_in_the_keyes, May 10, 2013
Oh McKansas I was thinking about you today....went to the gas station, paid for the gas, drove off without getting the gas. Had to go back.  Luckily clerk saw me.  Got the gas. Went to the post office to mail a mother's day card to my aunt and the card was back home.  Stopped to get something to eat.  Read the menu and drove up to the window to get my food and I realized I hadn't even ordered.  AHHHH.  Came home, parked and went to sleep.  Woke up dizzy and walked for the next hour or so listing to the right side.  So weird.  I went to that transplant education class Monday and took all sort of tests.  Hector, O and  Advocate are helping me get through this as it becomes crazier.  I posted a message on "does this make common sense" and got some good advice.  I know I might be okay at this second but that it can quickly change. Thing is I take meds for HE.  Think I just have too much on my mind.  I like reading your back posts.  I agree with what you are saying.  Hang in there....I told Hector I feel guilty trying as I am doing all of these pre-transplant tests when the patients I see at the hospital are so much sicker looking than me but have been told that this could change quickly.   I post a lot on here because there is just not anyone here that I can talk to....that would understand.  

You are a brave one too.  Very independent...and we can't feel guilty about when we were younger...that may or may not have been when you got HCV.  Good knows I was no angel along the way and I was a pure product of the 60's - 70's right down to the flowers in my hair to hippie clothing...gauze tops...my 501's....macramé bikini's halter tops and daisy dukes.  Oh yah...I was a wild one...but don't regret a single day.  It wasn't my fault that my body wasn't strong enough to fight off a virus that many others who had the same life style, could.


4043517 tn?1374010173
by mckansas, May 10, 2013
Ain't it the truth, I'm not supposed to drive,  but who wants to give that up? I stood in line at the post office the other day,  finally got my turn and couldn't even remember why I was there, still don't. I take nh xifaxin and lactulose like a good person and this still happens. But I wouldn't have given up those crazy fun days in the 70's either, must still have a taste for that. It has made me have a different outlook on life, definitely sets you apart that hidden life no one would understand now. Being entertained by computers, cell phones, Internet can never compete with instantaneous tripping.....something about that taste in your mouth and being swept off to a new reality. HE is just another slice to experience even though I thought I was way past that at my age.

Avatar universal
by Advocate1955, May 10, 2013
Mckansas:  Sorry about the nightmare.  I hope it doesn't happen again.  Would your hepa be willing to prescribe Zolpidem to help you fall into deeper sleep?  I know insomnia and disturbed sleep is part of the ESLD and the HE, as Hector has described it as being a very common symptom.  The nightmare probably goes along with that, your brain just isn't letting you go into a deep enough sleep perhaps.  What did your hepa's report say?  
Heart_in_the_keyes:  I don't know what daisy dukes are...I remember jeans, peasant tops, frizzy hair, flower chains in my hair, and huarachis.  I remember beads.  I remember war protest rallies and folk music.
Advocate1955

4043517 tn?1374010173
by mckansas, May 10, 2013
Just a day/night filled with weird dreams and nightmares. Woke a little bit ago thinking I was being kicked out of the Dairy Queen because I refused to be sent to the hospital in an ambulance. Don't know what I did to irritate my favorite ice cream stop:)
The report just says all the things I can't do, like think, follow directions, concentrate along with the black and white facts of ESLD, decompensated liver, HE dream state, confusion.......................My life as I think I know it. This report should be enough to qualify me for SS now that it's on their official form and in black and white. I read it and thought, this person is a mess, she should stay home. I fight the urge to drive off by myself as I have found myself wondering where the hell am I? Why am I here at this store? What compelled me to be in this parking lot?

Avatar universal
by rivll, May 10, 2013
But I wouldn't have given up those crazy fun days in the 70's either, must still have a taste for that. It has made me have a different outlook on life, definitely sets you apart that hidden life no one would understand now.
-------------------------------------------------------------------------------------------------------------------------------------------
Well said! :D

Mckansas on the cirrhosis forum mikesimon posted a link to a study that shows indicates the probiotics help with HE. I would check it out.
I don't have HE but I get very foggy thinking and found it is related to the toxic build up in my colon. Probiotics help me with that. I use the super strength that has to be refrigerated.

Avatar universal
by ejoli, May 10, 2013
mckansas,   I do that too sometimes. Not long ago I drove all the way to the mall and parked. Couldn't remember why I went there. I went home then and went to sleep. I really don't drive that much.  I once went to the library which was one exit from where I got on 235 and next thing I know I was miles down the road at zoo blvd. So I turned around and went back and next thing I know I was home and didn't stop at the library.  Some days are better than others. I don't take xifaxin because I am on medicare and since it so expensive I take neomycin instead. I don't think it works as well and am trying to get help from the manufacturer to pay for it.  Take care,    -Libby

4043517 tn?1374010173
by mckansas, May 10, 2013
Glad I have insurance, I know it's expensive. I pay $35 for it, told my son yesterday when we went to pick it up I think it costs like $1,000 if you don't have insurance. He asked how does someone pay for it? I said maybe Montel Williams drives up and gives you a year supply or something. Ridiculous it costs that much as it really helps, plus the lactulose. I'd be in a coma for sure without those two drugs.

Avatar universal
by heart_in_the_keyes, May 10, 2013
Xifanan is sooooo expensive.  You can get $100 coupon but can't use if you have supplemental insurance and Medicare then forget it.  When the supplemental donut hole period  that starts at the first of the year until you meet your deductible is over my co-pay for it is $140 a month...in donut hole period it is $640.  The drug itself runs $1400 - $1500 a month.  Who can afford that....in Canada it is $170. go figure. at least if and when I get a transplant I won't have to take it.

Advocate...daisy dukes are blue jeans cut off sooo short that your butt cheeks peeked out.  And the best ones where frayed and thread bare.  LOL  

I dropped Jack off at the vet this a.m. and went to pick him up at 5 and was sitting at the post office which is about 14 miles past the vet's office.  Had to hurry back to get him before they closed.  Swear if I didn't have him by my side to snap my into reality....my best time of day is between 7pm and 4am....totally wide awake and lucid.  It's the days that can be crazy.  

It's hard for me to come out of those coma like sleeps because I am back there and happy....luckily I have good dreams...hope that doesn't change.

4043517 tn?1374010173
by mckansas, May 10, 2013
Damn I'm lucky to have insurance.

4670047 tn?1375734001
by mzkity, May 10, 2013
Wow that is costly. Drugs are tricky. I have a nurse friend that believes drug companies deserve the money they charge. But 20 years ago I lived by 2 drug salesman, there expense account was off the charts. They catered to the doctors so they would buy the drugs and give them to there patients. I've heard it's changed now but probably not so much. I just wonder what the drugs really cost. Raw material and processing?

Avatar universal
by heart_in_the_keyes, May 10, 2013
nada.....my pharmacist says the US funds the costs of drugs for the world...when I told me doctor this thinking that maybe he would okay a Xifanan for Canada....said, yes, that is probably true.  I found this to be true with interferon that was made in Ireland...cheap there but very expensive here....and look at the monthly costs for tx...good grief.   They went over meds the other day and said that after/when I get a transplant the immunosuppressant will not cost me anything but for 90 days I will have to take a drug that runs $3000 a month and I will need to pay 33% of that.  mckansas is lucky if insurance covers.  I don't believe drug companies deserve the amounts of money they make off of drugs that could save a person's life.  They are subsidized somewhere along the line.  And look at the recent battle between two of the largest drug companies over who has the rights to a drug that could save thousands of people from this insidious disease.  If comes to the question of morals and ethics versus financial gain.

Avatar universal
by ejoli, May 10, 2013
   Yes, it's tough but having been through one of the victrellis trials. Just for that one drug they paid for Thousands of peoples treatments.(blood tests and rescue drugs also) I estimate my tx cost 200,000 or more.(and they had to have 4 phases) So they put out billions of dollars on that one drug.(most drugs don't make it) That drug is already saving lives. It will be expensive until they recoup some of their money. They do this for how many drugs a year. If you don't pay for new drugs they will stop making them, because after all, it is all about profit. I do think that it ***** that at my age I have to deplete my retirement or use less expensive and not as effective drugs. Maybe I didn't plan ahead as well as I should've. But who knew that I would have to quit working at 50 years old.   Well, I get by...

4670047 tn?1375734001
by mzkity, May 10, 2013
Heart I have to agree with you. Hubby says its a racket. They have a nice set up. They cause insurance rates to go up, EVERY YEAR!  

4043517 tn?1374010173
by mckansas, Jun 15, 2013
Did something crazy today, went with my daughter and we got matching tattoo's. Never thought I'd get one, but what the hell. I told the place I had Hep C, they clean all their equipment, just told me not to put it down on the app. I went first, my daughter next, so we had to wait for them to clean the equipment, definitely not transmitting to anyone else. It actually hurt a little. Got it on my inside left arm, it's an outline of a little bear my Mom got my daughter when she was a baby. If she was alive she would have went with us to get the tattoo also, so anyway, all the females are connected now.

Fun experience.

I've got a huge circular rash on my back, again noticed by my daughter. It looks like a tick bite, but no tick bit me on the back,  did catch 6 of the little bastards crawling on me a couple weeks ago, but none ever stuck. Had a nightmare later that week one was in my bellybutton, but no, it was just a nightmare. Anyway, going to doctor on Tuesday I'll ask.

4043517 tn?1374010173
by mckansas, Jun 22, 2013
So with the new pain control I'm out and about again. Started walking the dog and bike riding. After this last swelling episode I decided to just quit eating much, feel better that way and the pain meds are working better also. Feeling pretty good, just the constant pain in my abdomen and back, but I'm kind of used to it I guess. Trying to enjoy summer by taking the fat Weimeraner on walks, he loves to jump in the river and try to capture the geese and egrets, of course he can't. Found a putter golf Frisbee the other day on our walk, he's not interested, but another reason to walk over and get some exercise on the golf course. The wind is horrible here in Kansas, but putting in around 10 miles on the bike again. Going to be in good shape when I get that new liver I hope. Probably living in the eye of the storm, my PCP says to watch it on the bike, no more accidents, if I did that this summer I'd drown since there's water in the big Arkansas this year. Go back to hepa mid July.

Avatar universal
by Advocate1955, Jun 22, 2013
Glad to hear that your new pain meds are working better and that you're able to be more active and enjoy the outdoors.  I agree with your PCP though, be careful on the bike, no more accidents!
Advocate1955

4670047 tn?1375734001
by mzkity, Jun 22, 2013
That's great news your out and about!!! Isn't it horrible being in wind. We used to live in a desert town near Palm Springs. I hated the heat but what worse was the wind. I like breezy. Lol!   Glad your doing better. You sound perky!!  How is buddy doing? I think about I'm a lot. :). Kitty

4043517 tn?1374010173
by mckansas, Jun 28, 2013
Had a lawyer call today to see if they could help with my case, asked about my doctor I said he's a hepatologist. This person says what? A Herpetologist? I cracked up laughing. They said what? I've never heard of a hepatologist, my spell checker says herpetologist!! I said oh well, try gastroenterology, specialty of etc..

They didn't even know what they were talking about, but to me it was so funny to think I was going to a snake doctor!

4043517 tn?1374010173
by mckansas, Jul 04, 2013
So today is the 4th of July and in celebration I read and heard on NPR there is a remote chance that stem cell research may allow a complete liver to be grown without having to wait for someone to die and donate theirs to you. They say it's at least 10 years away, but I swear, I'm going to make it that long and I'm going to be one of those that gets one of those grown from stem cells that is biocompatible with MY body, eliminate the need for anti rejection medication because it's made from MY body. I'm excited in regard to this research and hope it moves quickly. I do so prefer to have a liver that is grown out of my body parts instead of the sorrow of some poor person who suddenly died and their family had to give up their body parts to a complete stranger. It's the ultimate sacrifice to give a part of yourself after death, but I do prefer to have a liver grown from my own body. I hope they conquer these obstacles and I am able to get something like this. It motivates me to last, hang on and fight this disease that wants to kill me.

4043517 tn?1374010173
by mckansas, Jul 07, 2013
My appointment with the social security psych is the 15th, wonder what they ask, or do you take a test or what goes on? I'm definitely confused, I seem to get easily tricked by simple things, read something several times then figure it out differently each time. Ughh, well, it's weird they don't take the doctor's word for what's wrong, but they think the lactulose and Xifaxan is making me normal and well, it basically keeps me out of a coma. Maybe they don't know that, but whatever, I'll do my best to answer their questions, but nervous about the whole ordeal. Plus it's so early in the morning, 8 AM, not my time of day, better in the afternoons, but maybe I don't want to be my best? I don't know. Letting my daughter handle all the financial stuff 'cause I've made some stupid mistakes lately, it's better she looks and OKs everything these days. That week I go back to transplant center for visit, see where I'm at these days. Too bad I can't hang on long enough to get one of those stem cell livers, guess it's 10 years down the road, that is if politicians don't get all involved, then they'll ruin it for medical science. But think how cool that would be to have a liver grown just like yours, no anti rejection worries, no gnashing your teeth that you have a dead person's liver in you, someone died unexpectedly and you benefit. Sorrow/joy, so strange. Off to lay down, it's easier typing on the computer instead of my phone, less misspellings, but I hate to sit for very long, my left leg starts to swell, Plus just not getting along with food since the corn dog incident. Everything bothers my stomach, ***** as I get so hungry only to end up writhing in pain, miserable 'cause I ate. Today the watermelon even bothered me. I have high hopes for watermelon since I'm growing it in my garden, hoping to have a bunch. Maybe it's the heat is bugging me. Don't know, just retreating further into myself.

Avatar universal
by Advocate1955, Jul 07, 2013
Hi mckansas,
That's great that you've got your appt set up. They might do some testing, or maybe an interview. I think you're right, maybe best that you won't be at your best in the morning. Maybe your daughter can volunteer to answe questions they might have too. Tell her to really go into detail on the functioning part. That will help.
Sorry you're tummy is misbehaving. I think that might just be the progression of the disease. Your body has more and more trouble absorbing nutrients and filtering toxins as time goes on. Maybe your hepa will give you an anti nausea med? Try to eat small, regular meals and ensure. What about fresh fruit or vegetable juice. Do you have a juicer?
The swelling in your leg might be edema. Tell your hepa about that too. Maybe a diuretic?
Geez, I know it's tough. Don't go inward. That will lead to depression. Reach out. We're here for you. Maybe your HE is increasing?  (Stay away from corn dogs!)
Can you have Popsicles? Yum...
Take care.
Advocate1955

4043517 tn?1374010173
by mckansas, Jul 09, 2013
No, just me and shrink. Fifteen minutes early to fill out paperwork, she will help with that.

My left leg does get/have edema. No matter what I eat. Try to walk and it really builds up, then I'm up all night peeing as it drains from my system.

I'm sure the SS disability people are supposed to deny as many claims as possible. She is supposed to see if I can work somewhere for wages even with HE, cirrhosis, decompensated liver etc.

4043517 tn?1374010173
by mckansas, Jul 10, 2013
Continuous problems with my Ford Edge air conditioning, resulted in no repairs while she was away, got ripped off free rental car because I didn't understand what I was being told, they had the Edge twice to figure out the air conditioning and of course it still fails in the hottest weather. I complained about their service on Facebook and they refunded my rental money and my daughter is back so she drove me to the dealer in the steaming car with it's pathetic non-air conditioning and I leaped out at the dealer and said "you get in this piece of **** car and tell me how great the air conditioning is".....well, with Facebook post the manager and his boss were there and they were appalled (!) finally at the lack of their idiot mechanic to fix the problems twice when they've had my Edge. I also complained they used all my gas and left it on empty so I'm hoping they fill it up this time in contrition. They gave us a new Explorer to drive, gotta say it's the shizzz. Love the car, didn't get that one because it was $10K more than the Edge, but damn, I love the room inside it. My daughter is chauffeuring me around in style now, I told her I can't be left to get these things fixed when she is gone, look what happens. She said yeah, but it worked out way better, they gave you a Focus last week, this week nice upgrade! Ha. Well, as long as they fix the damn air conditioning.

This is when I decided to eat something, we came home and made spaghetti, real meatballs, garlic bread and stupid me, ate some. Sheez, my stomach hurts so bad after this event I get so sick of drinking Ensure, fruit is even bothering me and I don't learn. I just get hungry. Garlic is supposed to be good for the stomach, maybe it was the one meatball I ate (turkey-thought it was supposed to be OK) or the marinara sauce. I don't know.

4670047 tn?1375734001
by mzkity, Jul 10, 2013
Wow I'm really worried about your food situation. But spaghetti? Yikes!  I know you've probably tried everything but I can't help but  throw my 2cents in! Can you eat the high fat yogurt? Or ice cream with protein powder?  During my treatment I sometimes would take just 2 bites of food then let it settle. Even a 1/4 of a sandwich is better than nothing. Dang I wish you could still use your "stuff" so your tummy would be a little happier. Maybe you should ask the Dr. again about your "stuff". LOL!!!   Hope they fix your car, that's the worst.    Keep truckin!!!!      

Kitty

4043517 tn?1374010173
by mckansas, Jul 10, 2013
Whole grain spaghetti is bad?  No ice cream.  Used to,  but cramped up badly last week.  Tried it twice thinking it was something else but nope, must be the over cream.  It was Breyers Natural Vanilla. Try to let it settle.  It's not working.  I just cramp up.  

4670047 tn?1375734001
by mzkity, Jul 10, 2013
I just think pasta is heavy. I don't know. What about frozen yogurt? Can you tell I'm a "Dairy Queen" Lol!!!
Well I guess I'm doing my Wallmart shopping late today. It was so humid today. Looks cloudy, but I doubt it will rain. I have to get stocked up its granddaughter week end. I'm feeling better so I can make the drive now. It's a long one--freeway traffic.

4043517 tn?1374010173
by mckansas, Jul 10, 2013
Last year I like Orange Leaf, the frozen yogurt place or Cherry Berry, but haven't been this year. Just better waiting this out for a week or so. I don't know about the spaghetti, I always get along with bread products (usually), don't bother me much, but man oh man lately it's just a killer. I like crushed ice and Ensure, my daughter got me some Yoo Hoos, I always loved those, such a child, so I'm sipping on one now, so far so good. Also on crushed ice. I just like crushed ice I think:)

Avatar universal
by rivll, Jul 10, 2013
Hey mcKansas,
I stopped dairy and all bread products 6 months ago. Everything I ate made my tum hurt and just "sat" there, moved sooo slowly.
I finally took digestive enzymes and probiotics and it help sometimes, a little.
Finally I stopped eating except for vegetables and a whey protein powder twice a day I mix with coconut water or almond milk. When I feel an upset tum very rarely now I  vaporize MJ and it helps
The pain has stopped. I felt/feel better and better, but all those other foods I cut out would still do me in if I were to eat them.
It is a bit different for me though because I have compensated cirrhosis and my liver is not fighting the virus anymore. Maybe you should let your Hepa know?
All the best~

4043517 tn?1374010173
by mckansas, Jul 10, 2013
Can't do mj. No transplant if they find it again in my system.  I would love to vape but no they'd rather have me on oxycodone

Avatar universal
by heart_in_the_keyes, Jul 10, 2013
Body can't tolerate milk or ice cream but loves geek yogurt and cheeses and cottage cheese/w pineapple.  Spaghetti is heavy but I crave it with fresh tomato, basil and garlic.  I have just had to learn to eat bits of this and that....plus eat smaller meals.
  
I use the old rule of hand...ball up your fist...your stomach can only hold as much as the size of your fist.  Not much in my case. So I try to half that amount.  Drink veg and fruit juices and I am a popsicle freak.  Especially the fruit kind..  When I fix fruit drink or veggie drink I will half fill the little cubes of an ice cube tray.
  
My blender can take a mango and pineapple and some ice it makes it more like a sorbet and I freeze peda-lite popsicle sticks....after I had my heart cath last month they keep you there for 4 hrs. after and give you a whole meal....good stuff too but all I wanted was popsicles....they brought me two but the nurse made me eat "real food"....or you don't get your popsicle.  Somehow I was 5 again...LOL.

My liver is decompensated and waiting for one more test then approval for the transplant list but so far if I eat smaller portions of what ever I want I am okay. I do watch protein or foods that have too much iron in them at one time it seems to be a problem.  Am on Prevaid X 2 a day for ulcers from the USAD's that I took for years and I drink a lot of water and do drink coffee at least twice a day.   I am interested in the probiotics....don't know if there are different one and if there are which one to take.

And I can eat something for a long time and all of a sudden it gives me a problem but then a couple of months later I can eat it so I don't think it's the food, but the combinations of food or that amounts of food or the groupings of food that I eat in that one day that I've had to learn to watch. I have to make sure all the foods like each other and drink a lot of water.  

Hector had told me that my liver because of it's stage of decompensation has to work harder to process the food I eat. So going under that premise I need to put only good, and necessary for survival food in my body.  I know that sounds weird coming from me, a foodie, but if I had learned a long time ago that eating the most and cleaning my plate were not necessary for my body to survive how different things might be. Makes you wonder how this baby boomer generation became so large considering we were all brought up on charcoaled food, fried chicken and mountain high plates of spaghetti just to name a few.  

I wish I could get down to what I want to do is to on veg and protein drinks twice a day and one cooked meal a day.  I watched that Montel Williams tape and that is what he does...2 protein drinks...raw veggies....sorbets, quick small bite size snacks and only one small  "meal" a day".   This man has a different disease by all means but one that carries a death certificate or slow wasting of body, muscle and bodily functions with it and  he was in so much pain he was ready to commit suicide....have you seen his 6 pack....and he has so much energy although he says he does try to sleep 6-8 a night and takes 1-2 hour nap during the day.  He must have some will power or maybe I am just too indulgent....

Did you know...and I know this from working in the ER....that when people sometimes hold water it is because they are dehydrated.  Weird huh?  

4043517 tn?1374010173
by mckansas, Jul 11, 2013
I like popsicles too,  tolerate well and yours sound delicious.  Going to try that tomorrow.  Maybe I am dehydrated because of lactulose it ***** the moisture out of you and even tho I drink water like crazy who  knows.  Yeah I used to eat so much,  loved fried chicken but the thought of that is putrid.   Haven't seen Montel Williams tape what does he have? Just woke up to my son texting me that he got notice he will be laid off July 27. I told him not to worry,  at least we have a home to live in and each other.  He's going to comic-con with a friend next week so he should relax and enjoy that.  I'm lucky not to have heart issues,  my mom and grandma did but I must of inherited my dad's side on that.  Last week my blood pressure was 109/68. I'm happy about that at least.  Plus I still exercise.  I have pictures of my doofy Weimeraner swimming in the river on my instagram. Do you have an instagram or vine? Went for a short bike ride about an hour ago.  Helps my frame of mind even tho it tires me out a lot.  Always helps my stomach also.  Gets it to quit spazzing.

Avatar universal
by heart_in_the_keyes, Jul 11, 2013
He has MS...really bad.  He was on Rachel Ray show today if you go to her website you can see it.  My one granddaughter is in to comic-con...she is a hoot.   Sorry about your son getting laid off.  the times are so hard now.

I am lucky not to have any other problems but my liver...had to do the heart cath for the pre-transplant list....they put you through so many tests...about 5 heart tests, breathing tests, kidney, lungs, dental, pap, mammo plus blood work...can you say 29 tubes of blood at one time...hells bells why just not take a liter and get it over with.  

I don't know how to instagram ... need to get my 6 year old granddaughter to show me how....LOL.  Not that computer savvy.  Need to figure out how to post pics though.  I enjoy everyone's pictures.  

The first dog that ever scared me when I was 4 was a Weimeraner...my grandparents neighbors had bought one and he vaulted the fence and started chasing me....he just wanted to play but at 4 you don't know.  I was so little and he was so tall and so gray....now I love them....they are really cool dogs.  Always had huge dogs until I had to move into an apartment and got little ones.  If I had a farm or a house I'd have dozens...they are the best.  Of course today I couldn't afford to really feed that many dogs plus keep them in shots even if I gave them myself....

I don't have a have a bike.  I'd probably not be up to riding one right now.  Jack sometimes finds it a task to "walk" me....LOL.....today I was really dizzy and walking him and he did a tight lead on his harness to give me balance.  I can tell him Jack take me home and he rounds me up and herds me home. He is funny.  

It is could you can ride.  That is wild it helps your stomach feel better.  Good exercise for you.  Got to keep the blood moving.  Read this article that even when you are sitting reading or watching TV you should do circles with your feet, move your toes forward and back...do small leg lifts from your chair...do arm circles...flap your arms.  Any movement is better than no movement.  I'll send you Montel's blender drink recipe.  

Avatar universal
by heart_in_the_keyes, Jul 11, 2013
Ingredients
•2 pints chopped watermelon
•1 pint pineapple
•2 green apples
•2 bananas
•2 quarts coconut water**
•1 large bag of frozen blueberries
•1 bag of baby spinach
•ice cubes
•blend
•makes 4

**I think coconut water is expensive so sometimes I just add more pineapple or a half a can of coconut milk or just more cubes and a little plain water.  You have to fool around with it a bit to get what you want but this is good.  
Have others:

I throw watermelon in all of my fruit drinks and pineapple...love kiwi's. oranges and mangos.  ....will pour extra on small cookie sheet in about a 1/2" and freeze and then scrape together in put in a container like gelato...

Have a bunch of smoothie recipes. Also do Dr. Oz's green smoothie ....  Right now I have just plain fruit pieces in the freezer frozen and I will grab one or two pieces and that curbs my sweet craves.  But have to watch the fruit because of the sugar content.  I am always open for recipes and new ideas,.  

4043517 tn?1374010173
by mckansas, Jul 11, 2013
All I hear it's comic con,  comic con,  damn they are taking train got tickets for Thursday and Friday.  They are so excited! !. Louie is a handful but i love him.  He's calmed downed in the past few years.  He's a trip.

4043517 tn?1374010173
by mckansas, Jul 12, 2013
What a day.  Had a garage sale to raise desperately needed money.  So hot,  so tired,  so much pain, damn going to bed.

Avatar universal
by rivll, Jul 12, 2013
Take good care Mckansas. I am thinking good thoughts for you.

4043517 tn?1374010173
by mckansas, Jul 14, 2013
I am listing to one side, pain levels spiking, but I have some cash to buy my latest Xifaxan meds, got a lot of groceries, got the dogs more food, gassed up car, paid a bill or two, will make it to disability check time. Thank goodness for garage sales, can't believe my junk in garage can raise money for stuff I really need. It's worth the pain, now to keep from falling! I'm sacking out on couch for next month to recuperate, except for this psychiatrist appointment tomorrow morning. Early, I will be a mess, but I guess that works in my favor.

4043517 tn?1374010173
by mckansas, Jul 15, 2013
All I can say is banana pudding has changed my life for the better. Make the whipped cream,  then French vanilla pudding,  then cream cheese with condensed sweetned milk.  Pour over sliced bananas and vanilla wafers,  chill and it's the best tasting thing your stomach will love you.

4043517 tn?1374010173
by mckansas, Jul 16, 2013
Made strawberry -smashed- popsicles yesterday.  Very tasty.  Tried orange pineapple juice but my stomach revolted. Going to mix strawberries and bananas together.  Have both left over.

4670047 tn?1375734001
by mzkity, Jul 16, 2013
Yum!!  To all your recipes. They sound good!!

4043517 tn?1374010173
by mckansas, Jul 16, 2013
Paula Deens banana pudding recipe is the shizz, ice cold and smooth. She may be a pain, but the recipe is good.

4043517 tn?1374010173
by mckansas, Jul 18, 2013
OK, tomorrow off to KC. My daughter was found to have gallstones and needs her gallbladder removed. She has had problems for years, no one could figure it out. Imagine that? So when she was the worst I'd seen we went to emergency room and docs there are really good. He figured it out right away, didn't blame her for being a female, having a uterus, allergies, etc. he zeroed in on the pain area, did an ultrasound and even I could see the giant gallstone clogging her gallbladder. So she is eating what I eat now, She always wondered why she was in so much pain after eating fast food, drinking beer or having stuff like Alfredo sauce. Now we know. We are salad, fruit and now Popsicle buddies. Ha! Anyway, she'll get it out end of the month, the doc said it could become an emergency surgery as big as it is, so watch what you eat. She says she is good to go to drive me tomorrow even though I volunteered, she doesn't trust my driving abilities. I don't either for that matter. Anyway, will update if I find out anything useful from hepa.

4043517 tn?1374010173
by mckansas, Jul 28, 2013
No wonder I love watermelon, makes me feel so good! Found this blog today, probably others know about it, but thought I'd post a link.
http://blogs.hepmag.com/karenhoyt/2013/07/watermelon_benefits_hepatitisc_liver_cirrhosis.html

Plus this, I swear by the coconut oil, keeps me from itching, keeps my skin soft.  

http://blogs.hepmag.com/karenhoyt/2013/07/benefits_of_coconut_oil_liver.html



Avatar universal
by Advocate1955, Aug 05, 2013
I'm not a big fan of watermelon, but my hubby sure is.  There is a big giant watermelon sitting on my counter now!  I'm going to check these links out though.  Sounds interesting.
Advocate1955

4043517 tn?1374010173
by mckansas, Sep 01, 2013
I feel like the poor lady laying on the angioplasty table, still having thoughts of "they'll fix this, doctors can fix anything", the moment before the knowing takes you down a different, not so clear, path you learn about as you go & share what you've learned. Slowly the knowledge seeps in revealing itself in upheavals, trickles, confusion as to 'is this part of it too?' Was the payback worth the fun? Pronto Pup=one week w/feet elevated, drink water, eat watermelon. Hmm probably not. Cleaning out old house, carrying a few heavy things=one week confined, pain levels high, confused regarding what I did who I am/probably not. Walk all three dogs= no walking for four days/sometimes. Walk just Louie= walk Louie next day!yes. Too hot to ride bike, tried, but even my dimwitted brain knows better. I calculate my every move on what I give up for the next few days. Still have trouble with physical exertion tho. Need to pick up and get the last of the stuff out I want but having it equal one week of semi HE state is difficult to associate.

Avatar universal
by ejoli, Sep 01, 2013
  Hi Mindy,
         At least it's not Hot,hot,hot today!   I just can't handle the heat....

4043517 tn?1374010173
by mckansas, Sep 02, 2013
It's now a year since my life changed. Last year I was losing weight like crazy then suddenly finding out I have Hep C, knowing nothing, by the end of September I was categorized; hep c, cirrhosis, decompensated, but not until I finally got to a hepatologist did I at least fall apart. Passing out while riding .com bike, so tired after walking at work ask day, unusual behavior that all makes sense now, one year later. It's a tightrope, one side ice the other fire. Saved by lactulose, xifaxin, learning the foods low in salt, eating fruits like a friend and finally understanding just what kind of people drink Ensure (me!).

Avatar universal
by Advocate1955, Sep 07, 2013
Yay for you mckansas!  You have come so far in the journey of advocating for yourself and taking the best care of your health possible!  You are a hero.
Advocate1955

Post a Comment