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Year 2

Sep 08, 2013 - 87 comments

Today after progress I lost my balance, grabbed the rail on the front porch to steady myself but kept falling. Went backwards, hit my head on a brick, broke at least one toe, soaked in Epsom salts, bloody and foot swollen, butt and side throbbing, goose egg on my elbow. Confused. **** this hurts. Back to like my bike wreck. I feel so awful right now. **** **** ****. Thought I had this under control. Apparently not. My foot hurts so bad. My head is swollen. Kids made me stay up until they were assured I didn't have a concussion. Oh. I forgot how much it hurts to fall. Glad my bones are relatively strong. Only broken toes. I'm a mess as usual.

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Avatar universal
by Advocate1955, Sep 09, 2013
Good grief! I'm glad you didn't crack your head open or break your hip or your back.  Geez! Maybe you should have your daughter wake you up every 2 hrs or so tonight just to be sure you don't have a concussion or a brain hemorrhage? You have got to be the unluckiest person I know when it comes to falls, although remind me sometime to tell you about how I fell out of my jeep when I was driving it, and it ran over both of my legs. Can you put some ice on the bumps and bruises?
Advocate1955

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by mckansas, Sep 09, 2013
Used Epsom salts, soaked my foot. My left abdomen and back are killing me. Screw this HE that attacks when least expected.

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by mzkity, Sep 09, 2013
My goodness!! I know your in terrible pain but I guess lucky not to be in the hospital. Gosh do you think you should of gone to urgent care/ER??? Sounds like you got banged up pretty good. You poor thing! I'm so sorry for you. That HE really does just come out of nowhere! Poor kid! I think Advocate has a good idea, maybe you should get woke up every couple of hours. Maybe you could just set an alarm?? Well hang on Mckansas!!!

Advocate I would like to here your jeep story. Hhhm!! How in the heck did that happen?    Kitty

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by mckansas, Sep 09, 2013
I'm not sleeping that well.  Doze off and then wake myself by moving.  Damn this house needs maintenance.  That rail spread my toes,  thus it's swollen and got cut in between.  I think only one toe got broke though.  I will be bruised that's for sure.

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by pooh55811, Sep 09, 2013
Sorry to hear you fell like that and got banged up. I do think it would be a good idea to go to Urgent Care or your own doctor and get checked out. You could have more breaks or have injured something.

Avatar universal
by Advocate1955, Sep 09, 2013
So, the story about my fall out of my jeep:
One spring evening, my daughter and I were having a hard time getting a bee out of our house.  My husband works nights and so wouldn't be home until midnight.  I wrote him a note that there was a bee in the house and to please get rid of it.  My daughter and I each went to our bedrooms and put a rolled up towel under the doors so that the bee couldn't fly in.  My husband came home and tried to find the bee, but he couldn't.  The next morning I got up to get ready for work, assuming that the bee was gone.  I grabbed my sweater on the way out the door and put it on.  It was about 6:40 AM, and I was headed off to a 7:00 AM staff meeting.  I hopped into my jeep and turned the car on.  As I was backing out of our carport and turning toward the top of our driveway, that bee flew out of my sweater and up into my face.  He had apparently been sleeping in my sweater all night.  I panicked, opened my car door, and tried to get out of the car.  Unfortunately, I forgot to turn the car off and put it in park first.  The steering wheel was turned to put the car in the right position for turning to start backing down the driveway, and the back wheels were at the top of the driveway ready to roll down the driveway, which is a slope.  I had one foot in the jeep and one foot outside of the jeep on the cement.  As it rolled, it picked up speed.  I tried to climb back in, but the speed and the angle were too much.  I grabbed the steering wheel to try to pull myself in, but the jeep was moving, my foot was dragging on the cement, and I wasn't strong enough.  I fell out of the jeep, cracked my head on the cement, then my shoulders and back hit the cement, then my legs hit the cement, and by then the front wheel of my jeep ran over both of my legs (shins).  My hubby had his head under the hood of his car and didn't see me fall.  When he looked up, my jeep had continued rolling down the driveway, but since the steering wheel was still turned, the jeep rolled on into the yard and backed into a tree in our front yard and stopped, motor still running.
Advocate1955

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by mzkity, Sep 09, 2013
Oh my gosh!! That is some story Advocate!! Glad your still here. One little bee can cause such a tizzy. Good story (well now it is) lol!

Hope your a little better mckansas. Are you going to your Dr. Today?       Kitty

Avatar universal
by rivll, Sep 09, 2013
Advocate!!!! That really is some story. My goodness.
Are you allergic to bees? I just brush them off like flies, never bothered but it would be a different matter if I were allergic.

McKansas__I am really sorry about your fall. It sounds serious. I am glad your kids are nearby.

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by mckansas, Sep 09, 2013
Wow what a story Advocate! It's weird how a tiny insect or arachnid can make you lose all sense of what you are doing, killing yourself in an attempt to escape them!

I finally slept for about 4 hours, I hurt all over, not sure if I should go to doc. My elbow is a huge goose egg, my toe is killing me. I know there isn't much they can do for a broken toe. I should probably go in, but I feel horrible.

Avatar universal
by rivll, Sep 09, 2013
You are more susceptible to infections so if you have any doubts, you should just get checked out.
So sorry you had that experience, Mckansas and hope you recover quickly.

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by Revalation, Sep 09, 2013
When are you scheduled to see a doctor?
You could have an injury.

Reva

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by mckansas, Sep 09, 2013
Hepa not until December.  I might go to pcp tomorrow.  My body hurts, my toe is killing me.

Avatar universal
by Advocate1955, Sep 09, 2013
Well, after the fact, I would say I should have taken the bee sting (ambulance ER, Dr visit, ultrasound on legs, MRI on cervical spine, 3 ruptured discs,and discectomies and grafted fusion later).
Hope you're feeling better mckansas. So sorry this happened.

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by Sevetts, Sep 09, 2013
Ouch mckansas!.  I imagine your body does hurt.  I'm glad that you didn't crack your head open and I hope there is nothing seriously wrong.  I hope you get some rest tonight and see the pcp tomorrow.

Advocate: omg now that's a story.  Kind of funny now but doesn't sound like it was to funny at the time.  

Shelley

Avatar universal
by Advocate1955, Sep 10, 2013
I always kind of figured the bee won that one.

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by mckansas, Sep 10, 2013
Amazingly that toe is NOT broken! He said I had some tough bones, so that's good although it appears to already have started an infection so he gave me antibiotics and ran some blood and urine tests. Should hear back today or tomorrow. For now take it easy and keep it elevated.

4670047 tn?1375734001
by mzkity, Sep 10, 2013
Well that's pretty good news!!! Glad you went, it's such a pain to go to the docs even when you have a pain!!! Glad your toe isn't broke. :)

Avatar universal
by Advocate1955, Sep 12, 2013
wow, what a blessing.  No broken bones.  Yes, keep that leg elevated and iced to prevent swelling or collection of fluid.  He may have suggested wiggling your toes and feet periodically to make sure your circulation stays good?  
Hopefully the antibiotics will kick out that infection before it can really get going.  Watch carefully for signs of cellulitis, a deeper tissue infection which may require IV antibiotics.  I know you have ascites, but I don't know if you have edema as well, which can make clearing infections of the limbs more difficult.  Hang in there.  Glad you went to the doctor.
If I can find them I will send you some pics of what my legs looked like after my jeep ran over them.  And my legs turned out to be the least of my injuries, little did I know!  :)

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by mckansas, Sep 12, 2013
My labwork came back & ammonia is 228 -  just increasing the lactulose to 3X a day or 6 tablespoons a day. Platelets 48. Trying to figure out what I've been eating that is messing with me or it's just part of the disease progression. Who knows.

Avatar universal
by Advocate1955, Sep 14, 2013
Are you able to send your labs to your hepatologist so that he can help interpret that?  I don't know much about ammonia and lactulose, etc.  I do know it's a tricky balance between nutrition, fluid intake, bowel movements, and electrolytes.  Hector would be a great resource for this question.  In the meantime, no stairs without railings, no falling out of jeeps, no falling off bikes, OK?
How are you feeling today?
Advocate1955

Avatar universal
by Advocate1955, Sep 14, 2013
OK, I posted two pics of my legs after I fell out of my jeep and it ran over me don't look as bad as I remember my legs and feet looking.  They're on my photos on my page.  I could actually see tire tread on my shins and my calves swelled up from the pressure of the tires on my legs and the cement under my calves.  They hurt for about 2 weeks, but the real injury was the neck injury and that didn't make itself known for about 3-4 weeks after the accident.  They're not pretty pics, but here they are if you want to take a peek:

http://www.medhelp.org/user_photos/list/1739543

The moral of the story is never try to get out of a jeep when it's moving.  :)

Picture this:  my hubby carries me inside to put my legs up on a footstool, my daughter calls 911 to say mom's jeep just ran over her while mom was driving, my son goes to the jeep, which is still spinning wheels and running with the back end smashed into the tree in the front yard and gets my notes for my morning meeting agenda and calls my place of employment to say mom might be late to the meeting because her jeep just ran over her while she was driving but here's the agenda, calves are ballooning up rapidly...

Advocate1955

Advocate1955

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by mckansas, Sep 14, 2013
I emailed my hepa the results and the PCP is forwarding the results to him. He sent back an encrypted message and I can't get it to open. I emailed him back, said the PCP said to increase lactulose and I couldn't read his email message so if he didn't want me to increase lactulose please send me an unencrypted email. Damn. I guess he agrees. I feel like I took a blunt force trauma injury all over my body, so grateful I didn't end up with anything broken.
My calves and shins look like yours all the time, but I think that's petacheia (sp?) from my low platelets. I don't wear shorts anymore-don't want to frighten small children:)

My first reaction when there is a stinging insect in the car is to bail out, but I'll try to overcome that urge in the future:) I had a bee fly in through one of those triangle windows - you know on old cars before good venting - I was selling insurance in the country, driving back roads, 70's and a bee flew in thru that, right up my skirt and stung my hoo ha! I managed to bring it to a stop before screaming and throwing myself out the door. Hurt, but would have been worse bailing out at 40-50MPH. Did you make it to work later that day? Ha ha ha

Avatar universal
by Advocate1955, Sep 14, 2013
Yeah, I didn't want to frighten small children either!   :)  My legs do not normally look like that and they scared even me!  And those photos were about a week after the accident.  I could tell my tire tread by looking at my shins.  It was sad.  :)
No, I didn't make it to work that day.  I did make it to work 2-3 days later, hobbling a lot, and I recovered pretty well from the leg injuries (no broken bones, deep bruises, abrasions, etc., but no blood clots in my calves).  Then about 3-4 weeks later I started having radiating pain, tingling, numbness (excruitating pain) all the way down my arm to my hand and fingers.   That is what kept me out of work and led me to surgery.

Hmmm...I know the balance of lactulose and other meds is so important.  Can your hepa be reached by an answering service?

Advocate1955

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by mckansas, Sep 14, 2013
I don't know if he could be reached, my contact is his assistant, but yeah if they thought it was worth me visiting up there I imagine they'd call me. I hope anyway.

My label dosage is 90 ml / day or as needed and I was only taking 60/day, so increasing it is ok per label instructions, but I fear I will never have a normal gas pass again:) Can't trust that lactulose, ha ha. Hector says we've all been there, but still, it's not something you want to happen, your bowel control acting like a one year old.

I go back to PCP later this month for a follow up, so I'll see if this ever quits hurting and look out for the swelling. The hepa and his crew were telling me to eat more protein last visit so I've been drinking this protein powder mix - no creatine - maybe too much protein. It's chalky anyway.

Avatar universal
by Advocate1955, Sep 16, 2013
Did his office reach you today?

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by mckansas, Sep 17, 2013
No, just the encrypted email. I told him if the increase in lactulose wasn't acceptable please contact me otherwise that's what my PCP recommended. I'm feeling clearer headed, but still very sore. Blunt force trauma is not my thing.

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by mckansas, Sep 22, 2013
My toe is still swollen and sore, can't walk the dog very well but did get back on my bike after a couple weeks out of it and my legs needed it. Taking the extra lactulose has stripped another 10 lbs of water weight off me that I didn't know I had. My left leg was definitely puffed up, feeling more clear headed, got rid of the creeping nausea and fall down tendency. I hope this doesn't mean I'll eventually be chugging a half a bottle a day of that nasty tasting stuff.

I think Hector mentioned we all have to deal with the side effects of lactulose and switching my dose certainly brings this home (Depends anyone?), but I've adjusted and it's been for the best.

Met a guy in town that told me he was a recovering addict, feels he has an incurable form of Hep C Geno 1, I asked if he was hooked up with a hepatologist and apparently he has been advised to take Immodium D or something. I told him about this site, hope he joins as I told him you guys could offer all sorts of help and solutions. Hoping we see him on here soon.

Avatar universal
by Advocate1955, Sep 22, 2013
Glad you're feeling better.  Sounds like the increase in Lactulose was the right thing to do, since the hepa's office never re-contacted you and you're clearer headed and lost water weight.  I'm definitely not an expert on Lactulose or HE.
I hope the guy you met looks into the forum and starts reading so he can understand that many people have been cured of Hep C, G 1.
It is pouring down rain here today.  Hubby is recovering well from his back surgery and started back to work last Monday.


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by mckansas, Sep 23, 2013
I wish it would rain, makes it easier to sleep at night.

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by bluebird305, Sep 23, 2013
I just bought a lifetime pass that I can use anybodys bathroom at anytime, anywhere.  (lol)  But usually I don't ask, I just run right through everyone to get to one.  

Lactulose your so gross
you make me feel like ****
but I guess I need you, I suppose,
to make me feel more fit.

Oh brother, I am losing it big time.  That cant be the best that I can write.  good day to you all.  Blue

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by mckansas, Sep 23, 2013
Ha ha ha! That is great! Only lactulose users or possibly gallbladder removed people could relate! Went to see my oldest son Saturday, took all three kids out to eat and hadn't taken two bites of my salad when, whoops! gurgle gurgle where in the hell is the ladies room?

4043517 tn?1374010173
by mckansas, Sep 27, 2013
Ammonia down to 99, Lactulose does it again! Better to wear underwear liners than to fall down and/or drift towards coma-land.

Avatar universal
by Advocate1955, Sep 30, 2013
Hurrah for Lactulose!  :)
Advocate1955

1815939 tn?1377995399
by pooh55811, Sep 30, 2013
Glad to hear you are feeling better.

317787 tn?1473362051
by Dee1956, Sep 30, 2013
Ahh sweetie ,I just saw this,  I am so very sorry, I hope you are feeling better, my thoughts are with you
(((HUGS))) big bear hugs

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by sunru, Sep 30, 2013
So sorry anyone would have to have that kind of day.  Life is like that, I have found quirky things happen.  Regarding the lactulose, I could not take the sweet syrupy stuff.  Found out about Kristalose it is a powder that is the same as lactulose that comes in per serving packets that disolve in fruit juice and water easily and does not taste bad at all. I insisted on getting my doctor to special order it for me. (because I'm so special) It works better for me than the lactulose syrup and it's easier to increase if necessary due to taste tolerability.

4043517 tn?1374010173
by mckansas, Sep 30, 2013
What??? You don't like the taste of lactulose? I am shocked, shocked I tell you! Ha ha ha Who does like that crappy syrupy stuff? I will ask my hepa about the Kristalose, sounds WAY better than drinking that thick sweet syrup! Thanks for the info.

4043517 tn?1374010173
by mckansas, Nov 02, 2013
The mundane tasks of preparing for winter fill my mind. Better than thinking about my high ammonia levels and the ungodly amount of lactolose I'm taking 12tbls a day and I've grown to despise it. But, it's getting colder and I have to finish my fish pond I started two months ago. Fatigue. But I want flowers and plants to bloom in the spring and lighten my heart. Today Robin drove me to Ace Hardware and I got a big roll of nylon to put over the windows to keep out the cold air. At the rate I move it will be December before that's done. Gotta save on heating bills tho. Boomer's tumor is looking worse but I keep up the anribiotics and keep the inevitable at bay.   So tired from handing out candy and getting more stabbing pains in right side, vomiting and spasms all up my right abdomen to my armpit. Pleasant disease. Well that's my update ya'll.

Avatar universal
by Advocate1955, Nov 02, 2013
Sorry you're not feeling well. It sounds like the lactulose is helping your HE, but I'm sorry you have abdominal pain and vomiting.  Is there anything your hepa can give you for that?

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by mckansas, Nov 03, 2013
Well I quit vomiting if I don't eat candy.  That's obviously bad.  I don't know about spasm. They hurt so bad.  He hates to give me Soma 'cause the FDA is wanting to change Soma schedule  worse whatever that is.  . The hepa said to try some lots of hot showerd but that doesn't work.  

4043517 tn?1374010173
by mckansas, Nov 03, 2013
Typing on my phone earlier, sorry for the typos. That lactulose is about to make me sick, too much of it. I've been so tired lately, can't even go on my walks, but have to get it together and put the covering over the windows. I wish I had storm windows, but now that I'm on a fixed income that's not going to happen anytime soon. Old house and kind of drafty so saving heating costs is a priority. The electric company in this state proposed the state let them charge bad credit people as bad customers and they have to buy a prepaid electric card, then with the smart meters they have if you get to close to your limit of electricity they throttle it back, like the internet used to do if you went over their allowance. To say the least, a lot of people are up in arms about this. Since legally they can't turn off your electricity and gas in the winter, they can throttle it back so you're not quite freezing, just barely. What a bunch of crooks. We only have one electric company for the entire state and they get what they ask for most of the time. I wish we had some competition. Fortunately I have a deposit with them, so they won't be looking at me, but all the young people just getting their own places will feel the pinch. And they want to place a surcharge on the prepaids. Sheesh.

Avatar universal
by Advocate1955, Nov 10, 2013
It's so hard economically right now for everyone.  The school I work for is having financial problems due to lowered enrollment, which is due to the economy.  I hope your stomach is feeling better.  I don't know what Soma is or about the change in schedule.  I was wondering if you've tried eating small pieces of raw ginger, drinking ginger tea, or eating small pieces of the ginger candy that you can find in Asian markets?  You could also try asking for an anti nausea medication for days when it's really rough.

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by mzkity, Nov 10, 2013
Hi mckansas!  Well sounds like things aren't great but your hangin!! Addy gave you some good suggestions. Zofran is another. That might of been what Addy meant. Not sure if you can use that. But worth asking for.
Wow your electric company?? Geeze! Each state has its own gig. Ours is water. Use to much and your in trouble.

I never had my garage sale, it's piling up in the "garage" lol! Well it's sunny and very warm here, so maybe work outside today!!
Feel better mckansas!!! :)              Kitty

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by mckansas, Nov 10, 2013
Lately I've eaten, seems ok, then about an hour or  later it all gets heaved up. Then, like morning sickness I'm fine. Could eat again, but no, I just wait until the next day. Make sure I'm ok and some days get thru with no problems. Weird. I do best with Ensure and have worked a boiled egg in a few times a week. Starting to retain fluid more so hypervigilant regarding salt content. Peeled honey crisp apples, raw carrots and celery are my mainstays.

317787 tn?1473362051
by Dee1956, Nov 10, 2013
Thinking of you praying for you, take care
Dee

Avatar universal
by Advocate1955, Nov 10, 2013
McMansas, I'm worried about the trouble you're having getting nutrition, your fluid retention, and the trouble you having keeping Lactulose down. Can you call your hepa's office and ask if there's anything they can do to help?

Avatar universal
by Advocate1955, Nov 10, 2013
McKansas :)

4043517 tn?1374010173
by mckansas, Nov 11, 2013
They don't seem that concerned. My pcp and I have kept them informed.  I'm ok.  I'm not feverish.  It's only nausea that has plagued me for the past year.  I watch my fluid buildup via daily weighing.  My ammonia levels stay down if I drink the lactulose like I'm supposed to.  I relapse quickly when I eat the wrong thing.  It's a balancing act right now.  I drink a gallon of water each day to go along with the dehydrating lactulose. I exercise at least 3 days a week. I'm in good hands right now. I see  a doctor at least once a month. I'm hanging in there.  I do aPpreciate your concern.  Keeps me connected and on my toes!

317787 tn?1473362051
by Dee1956, Nov 11, 2013
Hi it sounds like you are working on this really well.
When you say you relapse when you eat the wrong thing, can I ask what that is? I am just curious if it is fried foods or red meat or ?
You are so right, everything is such a balancing act.  It is so hard to keep up.  When I was treating I did not take care of anything but my liver.  Now I have a frozen shoulder, while I am going to PT I need to go to a rheumotologist  and have not been able to take or make the time in my brain :) or life

It is really hard to keep up.  Take care, Dee


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by mckansas, Nov 11, 2013
If I eat beef it definitely raises my ammonia level unfortunately. Actually meat protein and I don't get align. Stick to yogurts, eggs, beans, ensure for protein. I want to eat candy for halloween but that is out. Like I said my mainstay is raw fruit, raw vegetables and ensure. When I stray I get sick.

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by mckansas, Dec 02, 2013
This Thanksgiving was much more pleasant than last year when I had been newly diagnosed and things were starting to make sense as to why I felt so horrible, couldn't focus, dizzy, extreme pain and saying discombobulated statements. Less than a week later I had gone into an HE episode of which I had no idea what was going on, let alone my family was baffled and afraid of what was happening to me as I repeated myself, falling down, starting ridiculous fights over nothing. I've learned a lot in the past year. I've come close to tipping over into the HE textbook reactions. Now I'm on Xifaxan and lactulose although the lactulose is gross at 12 tablespoons a day, but better than falling and acting weird. I learn more each month that passes. After coming to grips with my situation I was able to get SS disability rating and have learned to do more with less. Diet, sleep and exercise are my friends. The thing that continues to bother me is the over reaction to the need for pain relief even though I'm not on tylenol and with the blessing of my hepatologist I'm on good pain control and able to cope. Many do abuse these drugs and if I was allowed to smoke pot I wouldn't have the need for these addictive drugs they prescribe. Previous skeletal issues have caused me to be on pain relief for years, but the ones they have me on now are definitely addictive. I would love to be able to cope and I'm glad many are able to handle it without drugs, but I can't. I would have no quality of life, would lay in bed crying and drying my skin out with continuous hot showers that give temporary relief when in the shower. The drugs are there for a reason, I don't get a buzz off of them, but there's nothing like the relief you get after taking these. I am able move around, exercise and otherwise lead a fairly normal life. It's different for everyone and I am one who needs these to function and live a life while waiting for treatment drugs that I can take. It may be another 6 months before I am able to try treatment. Meanwhile the virus continues to attack my cirrhotic liver at the risk of damaging it further. It's a tough decision, but am stable more or less right now. Now on diuretics, ascites will probably be a factor in the coming year since I can gain 10 pounds overnight if I walk too far or eat even a minimal amount of salt. Just wanted to post this, hoping others suffering pain don't let the disease get you down. You can be managed while waiting for the new treatment methods to be approved.

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by mzkity, Dec 02, 2013
Great to read that! I'm completely aware of what your saying. It's important for you to stay active, even if it means staying on a maintenance schedule of pain meds. It's about quality of life that's for sure. I don't think we need to be heroes at our age. Lol!! But that's my opinion.
Wow so much changed for you in a years time. So did mine. Life is different now! But you are making things work for you! I'm glad your sounding so good! Wish we lived closer to each other, we could have a little club! Ha!!

Is Buddy ok? Does he get to sleep in the house?

4670047 tn?1375734001
by mzkity, Dec 02, 2013
I mean Boomer, oops. I knew that was wrong.

4043517 tn?1374010173
by mckansas, Dec 02, 2013
Oh yes! All 3 dogs sleep in the house.  I am their pack leader hah! The pug sleeps on the bed with me and Boomer has his pillow while Louie squishes his fat butt under the bed.  They all get chewies when it's bedtime. I've been packing his tumor with coconut oil and of all things I've tried it appears this is helping.

Avatar universal
by Advocate1955, Dec 02, 2013
mckansas, you are doing a great job. Look how far you've come in the past year. You've come from a downward, out if control spiral, to knowledge and taking control of your health. You have a great health care team, and you are in charge. I'm so happy for you that you are managing your ESLD. Everything is a balancing act at this point. If you need the pain meds and your hepa ok's them, take them. All u can do is your best, and u are doing that. When is your next hepa appt? So happy you and your kids had a nice Thanksgiving...much to be thankful for this year...you were diagnosed, referred, and ate being treated and stabilized...you have your kids and they have you.

4043517 tn?1374010173
by mckansas, Dec 17, 2013
This is probably construed as a mean statement but the questions asked are sometimes so ridiculous it's almost like people wish they had Hep C, not to mention they think they're going to die within a week of contracting the disease. Just crazy questions, like paper cuts, masturbating in underwear, scratches.....all questions are welcome, I know this, but.......sheesh.
Merry Christmas to all!
I go back in January for my 6 month check, hoping for good news in regard to getting treated in 2014, maybe off label use of Simeprevir plus Sovaldi. If not, I know it won't be long before there is something coming down the pipeline that will kill this virus without interferon, then I can concentrate on the cirrhosis and hope for stem cell breakthroughs in liver regeneration.

4043517 tn?1374010173
by mckansas, Dec 31, 2013
It's funny that people say well,  at least you've got your health.  No, I don't.  You've got a job,  no I don't,  but I'm appealing that decision,  you've got your family,  and that's what I cling to.  I've got three great kids that I love dearly.  Day before yesterday even my refrigerator gave up the ghost.  Not a lot of food,  but it's mine and the fact it's below freezing helps.  Just put the stuff on the back porch to stay frozen and a friend loaned us a $100 to get another so I'm the proud owner of a new refrigerator.  Not new but new to us and I'm grateful for that.  Hoping the new year gets better.

Avatar universal
by Advocate1955, Dec 31, 2013
You're definitely going through a very difficult time right now with regard to finances, insurance, job, etc.  I know it must be scary.  Yes, you have a serious health issue, but you have a great hepatologist in a great transplant center, new treatments are on the way, your HE is stable right now, you don't have varices, and I don't think you have ascites or edema do you (I can't remember, but I don't think you do)?  I know it's hard to think positively about your health, but you are so much healthier than you were a year ago.  You are managing your ESLD and managing your symptoms.  Your MELD is stabilized.  You are keeping your liver as healthy as possible while you're waiting for a Hep C treatment you can take, a clinical trial that your hepa thinks will be appropriate for you, and/or a transplant if it becomes necessary.  You are in the right place for any of those things to happen.  Look how much you've accomplished in a year.  And you're right to focus on your three great kids, and let them focus on you too.  They're great because you raised them great.  Now let them take their turn taking care of you and helping you through this tough time.  I don't think it will always be like this.  You will likely be able to treat your Hep C within the next year, your hepa will be able to help you manage your Cirrhosis and keep you as healthy as possible until you reach the criteria for a transplant, and you're already through with a lot of the evaluation steps to be listed, so all in all, although it's not what you had envisioned for this time of life, you are in a much better place than you were a year ago.  Right now, just focus on hanging onto health insurance, and letting your kids help you.  They love you dearly too.
Happy New Year!
Advocate1955

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by mckansas, Jan 03, 2014
So HR said they'd work with me, wait for hepatologist to indicate I might be able to return to work after treatment, BUT I still have to pay the COBRA payment as they can't carry me any longer on the company plan. I await the paperwork telling me how much this will cost. I obviously have no choice in this matter and need to keep my insurance if humanely possible. We'll see. Dang, at least I have a few more weeks to try and get it together and attempt to get back to work.

Avatar universal
by Advocate1955, Jan 04, 2014
I'm glad they're willing to work with you and work with the hepatologist.  Pay the COBRA and do whatever you have to do to keep your insurance.  Tough start to the New Year, but it will get better.
Advocate1955

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by mckansas, Jan 17, 2014
Hepa wants me to try sovaldi/interferon/ribavirin 12 week treatment if insurance will approve & asked if I wanted to give it a try. Got to stop virus and he thinks it's worth the risk because of high cure rate. I'm willing & waiting to hear. Took baseline blood assessment Wednesday (15) in anticipation of beginning treatment soon. Normally he would never subject me to the interferon for the year, but for 12 weeks it's worth it to kill this sucker.  

Avatar universal
by Advocate1955, Jan 18, 2014
If your hepatologist recommends it, then he must feel that your liver is healthy enough for the interferon.  What is your MELD?

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by mckansas, Jan 18, 2014
I don't know.  They did tests on Wednesday & I went to my regular doc on Thursday but results hadn't been faxed in yet.  I'll inquire next week and see. I'm so ready to do this.

Avatar universal
by Advocate1955, Jan 18, 2014
Keep me posted please.

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by pooh55811, Jan 18, 2014
It is wonderful that you will finally be able to start treatment. The SVR rates are good with the regimen your doctor wants you to do. Here's wishing you a smooth treatment and SVR. Keep us posted.

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by mckansas, Jan 21, 2014
OK, MELD is 10, viral load 587,234. Not bad.

Avatar universal
by Advocate1955, Jan 22, 2014
Wow, that is so awesome mckansas.  Look what a fantastic job you've done.  You've brought your MELD down by around 50% with careful management and persistence.  You are amazing!  :)

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by mckansas, Jan 22, 2014
I was 15 after original visit in 12/12 & went to 9 last year but up one to 10 this last visit.  You might have me confused with another.  I'm just glad I'm out of the transplant range monitoring.  They told me 13 was the number they use for transplant list. I'm good for awhile again.  No signs of cancer on liver so that's also good. Can't wait to hear whether insurance approves.

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by mckansas, Jan 22, 2014
I was 15 after original visit in 12/12 & went to 9 last year but up one to 10 this last visit.  You might have me confused with another.  I'm just glad I'm out of the transplant range monitoring.  They told me 13 was the number they use for transplant list. I'm good for awhile again.  No signs of cancer on liver so that's also good. Can't wait to hear whether insurance approves.

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by mckansas, Jan 23, 2014
Yo-K my insurance approves.  Waiting to hear what my co-pay will be. Hope doc is right and I can withstand 12 weeks.

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by mckansas, Jan 23, 2014
Just listened to a webinar discussing HE, but learned nothing new. Exercise, diet, medication, etc. to help control symptoms & manifestation of HE. Hopefully the next one will be more informative. It's sponsored by the America Liver Foundation if anyone is interested. I guess skyrocketing ammonia & falling down & wrecking my car has made me hyper aware of HE and limiting my decline. Good info if you're just experiencing this liver disease effect tho.

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by mckansas, Jan 31, 2014
So I watched Dallas Buyers Club and it hit home. I've experienced the ignorance and strange/awful behaviour that AIDS patients endured because of ignorance of the disease. Not as bad, but still awful. Fear to be close to me, fear of contracting the disease, loss of friends, assumptions as to my past. Just ignorant people. The movie is highly recommended if you want to relive those early days of the AIDS epidemic. I myself lost several friends because I supported my friends who contracted the disease. I lost three very close friends to the disease itself. It feels like deja vu having Hep C and enduring that prejudice. Crazy. Anyway, just wanted to comment.

Avatar universal
by Advocate1955, Feb 09, 2014
Ooops, sorry if I made a mistake on your MELD.  I thought at one point you said your MELD was at 20 around a year ago, like Nov-Dec 2012.  Obviously I must have misread that or didn't remember it correctly.  Anyway, 10 is good.  Hang in there, and let us know how you're doing.  When will you start tx?
Advocate1955

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by mckansas, Feb 09, 2014
That's ok. My medicine is at Accredo getting filled, Dr has to call them once more & I am taking instructions locally Tuesday so I don't have to travel back to KC. Probably start early next week as I prefer to take interferon on Sundays. Hopefully at any rate. Also have to schedule with PCP the blood draws needed. It's close.
  

Avatar universal
by Advocate1955, Feb 10, 2014
Ugh, I didn't realize you were going to have to take Interferon.  Well, you can do this!  Just plan and prepare, and be determined.

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by mzkity, Feb 10, 2014
I didn't realize it was with interferon either!! Well you been reading up everything for so long your going to be a pro!!!

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by mckansas, Feb 10, 2014
Like hepa said, it's better to kill the virus, stop the attack & he believes me & my liver can make it 12 weeks. I hope so too. Don't want liver cancer and prefer to wait for transplant as long as possible.

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by Dee1956, Feb 11, 2014
Hi I wanted to stop by...say hi, I am thinking of you, praying for you. 12 weeks is not bad at all.

Dee

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by mckansas, Feb 14, 2014
Well, my medications, Sovaldi, Ribasphere, Peg-Interferon have arrived today. Starting this 12 week journey on Sunday. The pharmacy my insurance uses shipped my medicine in three separate overnight packages which seems excessive, non-cost effective and somewhat ridiculous-but it's not my business wasting the money I guess. Hope to complete this, but as I read through all the alarming side effects once more, it quite frankly scares me. Don't know how anyone made it through 48 weeks of this crap. The hepa helpfully suggests I start Zoloft, another toxin, which allowed me once more to state that he'd be better off prescribing marijuana for me, which has zero toxic side effects, but alas he's not ever going to be on board with this. You'd think he would consider this as a good solution intellectually speaking since I've more than likely had Hep C since 1974 or 1975 and just started exhibiting dire symptoms a couple of years ago. I believe it has kept my symptoms at bay for many years. I've had to stop this and become an addict to their pain medications that is the preferred method of treating my musculo-skeletal issues. I respectfully declined the Zoloft as it was prescribed to me once in the 90's to make the pharmaceutical industry richer at my expense and it made me more depressed while my brain felt like it was sloshing around in a fish bowl. I prefer walking and fresh air. But what do I know, right?

Avatar universal
by ejoli, Feb 14, 2014
  Well, Congratulations Mindy,
                                I'm so happy you are going to start tx so that pesky virus can stop damaging your liver. It won't be so bad. Drink water!   Don't forget to eat....find something that you can tolerate.   12 weeks will fly by !   Last time I taxed I did 17 months.  I lived to tell about it....                      Good luck!     -Libby

Avatar universal
by Advocate1955, Feb 15, 2014
Keep us posted on how you're feeling.  It helps to have friends to talk to about the side effects.  You're tough, you can do anything for 12 weeks, right?
My hubby took Celexa throughout his last treatment (Incivek, Riba, and Interferon), and it helped immensely with the depression, anxiety, and irritability that Interferon causes for him.
As ejoli says, drink lots of water, eat before you take your riba, try to schedule your riba so that it's not too late in the evening, try to go for a short walk outside every day, and be optimistic.  Your MELD is good, so if your hepa thinks you can tolerate the meds for 12 weeks, then you can do it!
Advocate1955

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by mckansas, Feb 21, 2014
15 months after my car accident when I found I had hepatic encephalopathy I received a registered letter from the local yokels demanding my presence in court for an illegal right hand turn (passed out turning into another car & certainly illegal) & an ominous but nonspecific note of drugs. They couldn't get a blood sample from me so I find this unusual, not to mention weird that I'm being summoned 15 months after the fact. City coffers must be running low. Hmmmmmm. Can't wait to see how this plays out March 7 in the court house. May need a doctors excuse, do ya think?

Avatar universal
by Advocate1955, Feb 21, 2014
Wow, I would definitely ask your doctor to write a letter stating hepatic encephalopathy and the cognitive and physical side effects.

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by mckansas, Feb 26, 2014
Thought some of you might find this interesting and encouraging. Skin cells transformed into functioning liver cells in mouse study.


    http://www.sciencedaily.com/releases/2014/02/140223131703.htm

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by mzkity, Feb 26, 2014
My your up late. Trouble sleeping?  

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by mzkity, Feb 26, 2014
That was interesting, and amazing!

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by mckansas, Feb 26, 2014
Ha ha yes at times

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