I just wanted everyone to know I am missing all of you.
Sorry if I'm having a hard time keeping up wth messages and posts.
After having a wonderful holiday I came back full of life.
But the HE episodes are taking longer to recover from. As many of you know personally, I often wake up scared because I don't know how much time has passed, especially if it's nighttime. My partner is getting good at spotting the onset of them. He says it's like I'm sleep walking. I normally lay down and sleep or will sit and just rock back and forth till he stops me. I am often mean to him.
But I do find it curious that my body somehow knows to get up and use the loo. Is that normal? I don't eat, but my partner makes sure I take my meds and drink a bit of water. Then I might still be shaky for a few days, trying to recover.
I just wanted to update everyone, I'd hate to make any of my friends worry.
And pls forgive me if I don't respond to Any responses. I will do my best.
My kidneys are also being wacky, so they took me off the 10 milligrams of water pills to get rid of all the water weight. I lost 11 lbs of fluid in my legs in two weeks from that. But now they are saying since the shunt is flowing so well I should stop unless it comes back. They don't warn you that that is another possibility..swelling of fluid in the lower extremities and upper. But they should.
Cheering everyone on and sending all my love hugs and kisses!
Kimberly your American Pickle!
p.s. I'm not sure how my post was called Coleman something or another..lol. so I've changed it back to what I originally wrote..American Pickle Update
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dckimberly
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Hi Kimberley our American Pickle, you are loved by us all and we know you are getting better slowly but surely ,,keep your very jovial and informative posts coming they are always a good read and its something for you to look forward doing ,,,the shunt sounds like its doing the right thing and your water retention is subsiding ,,i know that can be annoying oh ive been there,,legs like the Micheline Man ,,,,its such a good feeling getting back to a normal regs fluids. big hugz as always your friend Matthew x x x
Hi Pickles, we,ve all been missing your words of wisdom around here. Don,t worry about the posts/messages everyone understands how it is with H.E, It,s been lovely hearing from you, thanks for the update. Keeping fingers and toes crossed that things improve for you soon, no one deserves that more after all your trials and tribulations. Much love and fondest wishes. anne x x
Oh my you are having a difficult time right now. Its so good for you to let us know. I had been looking for you then began wondering why we were not hearing from you. It sounds so hard to find any balance with HE. It sounds like a roller coaster one is stuck on till something causes it to quit. It must feel better to be free of 11 pounds of fluid, thats good. We are all thinking of you. We want you strong and fiesty again. Be well. Aloha
I am ok just hanging out in limbo until the radiologist makes a decision after seeing me. I should know next Saturday after seeing the transplant doctor. I am right now trying to get myself up and on my bike.
Pear, my dearest friend! Thank you so much! You have been so helpful and kind when it comes to this shunt thing and most other things! I'm so grateful for you in my life!
I know I may sound like a stuck record - but I really think that your care plan should be updated regularly - I know you want to get the best out of this liver and just the thought of having to go through it all again is so daunting - but you must be able to have a clear head when taking important decision - if left to the HE- you would probably refuse treatment and such and not even be aware. Your carer will be left the task to fight for you and, I have seen this so many times, be left with 'shes refusing treatment'. I'm sorry to sound so negative hun but have seen how HE can turn peoples brains so toxin ridden that they become their worst enemy. Trying to transplant a patient in that state becomes close to impossible.
Sorry for the long lecture - just worried about you so much...
Couldn,t we just kidnap her, it,s so frustrating!. This wretched illness . How is mr Pear at the moment?. Often think of you both. Why do they leave it so long Pear?. anne x x x
We are still battling on to try and get a surgery date...
HE is such a terrible disease and I have seen many people having clear HE symptoms being treated as though this is how they really are, expecting them to make rational decisions and conveniently the patient refuses all types of care. By the time they think about transplant - other problems have appeared - adding on to the ever increasing number of complications. Its not the best place to be, having to think about going through it all again. It's not just the patient but the whole family that has the transplant so I know how daunting it can all be....
Im seeing them next week and am going to demand they do something..I've had another episode..it can take 2 or 3 days to recover, shaking and vomiting..My partner and I want some answers..The last time they really saw me was nearly one month ago and it has gotten worse.
On my good days I'm grateful for the shunt..but lately I am losing half a week to the HE be it the episode or recovery..its nuts..The thing I have been most terrified always of, even before my first ltx was the HE..That's why I did not want one when they tried it before..because the HE leaves you helpless..you have no control of how much time you lose, etc.
The ascites is gone, but I am losing weight , quite a bit from getting so sick.
I'm glad your lecturing me. It does not feel like it, it feels like you care & that's a good thing.
I just hate coming here and complaining..Some folks are far sicker than I am..but I often feel so defeated with this.
Hi kimberley glad you had a good time in somerset we like it here.sorry to hear your liver is being really badly behaved !!! Does this mean you might have to be relisted ? Take care love cazer.x
Hi there. Actually, all things considered with the portal hypertension, it's doing great thus far with the shunt. But yes, at some point it will be back to the list!!
For now I am grateful for the good days!
Hugs
xoxo
Kimberly
C'mon Kimberly, this site just isn't the same when you're away too long. I thought your 'Coleman' comment was something to do with mustard and pickles.
I do worry about you Kimberly, as I'm sure we all must do.
Came back on here......it's been awhile ...... and searched you out sweet lady. i don't really know what to say the others have said it all, but i'm one more person carrying you in my thoughts and sending cyber hugs to cheer you on.... xx
( CARPE DIEM. seize the day. ) glad you plan to demand something is done sweetheart. please let us know how the appointment goes, we shall all be with you in spirit if not in body. Pickles, this forum is empty without your presence. we all miss you. not to make you feel guilty or anything (is it working?) but get that H.E kicked to the kurb we need our Kimberly back so we can stop worrying. Hope you are taking care of yourself and all goes well for you at the hospital. thinking of you always. C,MON PICKLES...xx
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