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HEALTH UPDATE...RECIEVED A LIVER (1 Viewer)

Happy New Year, Parmcat.  I hope you are doing better.
Hello and thank you for thinking of me.

There has been a lot going on, so I am sorry I have not updated in a while.

Have had regular parasentisis every 2-4 weeks having approx. 10 litres taken off each time.  Still have good days and bad days.   As the Hepatic Ecephalopathy gets worse, there will be more bad days.

On Dec 21/22, I had a two day assessment with the Liver Transplant assessment team.  I will get the results of their findings next week.  I have been lead to believe that currently, I am not sick enough to go on the transplant list (MELD score of 12, needs to be 15 or higher)  It is a crappy thing because it just measures the liver function via 3 blood tests.  It does not take into consideration constant fatigue, the massive muscle wasting I have incurred, the H.E, muscle and joint pain. 

There is a procedure they are considering, as a temp fix called TIPS.  They will insert a shunt into my liver to help drain the fluid, so I don't need to be tapped as frequently.  It is not a fix, as it does not filter the Asiatic fluid, and the H.E. can become much worse. (but my MELD score could go up)

Christmas was tough and emotional but I am glad it is over.  As a cherry on top of this, my 12 year old son came down with the chicken pox on Dec 30.  Luckily I have had them...

All the best

Sean 

 
Glad you are hanging in there.

Chicken pox?  That's actually kind of funny after all the other stuff.  At least it's easy to spell.

 
UPDATE

Got a call late last week that I have been placed on the liver transplant list.  I am low priority, but anything can happen anytime.  I got the call on Friday 13th....lol

Appts this week to update our wills and have all that in order.  This was tougher then I expected

Life moves pretty fast

 
UPDATE

Got a call late last week that I have been placed on the liver transplant list.  I am low priority, but anything can happen anytime.  I got the call on Friday 13th....lol

Appts this week to update our wills and have all that in order.  This was tougher then I expected

Life moves pretty fast




 
good luck Parmcat - I had not seen this thread.  Hang in there.

 
T-2 weeks for my sleeve surgery.  I will be honest and say that I am nervous about both the surgery and the aftereffects.

 
Sorry for the delay in updating.

Have progressively gotten worse.  Walking with a walker, always nauseous, very weak, and unsteady. Plus my thought process has gotten worse.  I am dropping words, losing thoughts and have some confusion and a mild tremor

I do physio 3x week, but can't focus for long periods, hense not being in the hockey pool

On a good  note, I have a couple of highschool buddies setting up a gofundme page to help offset costs if a live donor is found.  Not sure if I can post that here.

Thanks for the kind thoughts and ell wishes

Parm

 
Sorry for the delay in updating.

Have progressively gotten worse.  Walking with a walker, always nauseous, very weak, and unsteady. Plus my thought process has gotten worse.  I am dropping words, losing thoughts and have some confusion and a mild tremor

I do physio 3x week, but can't focus for long periods, hense not being in the hockey pool

On a good  note, I have a couple of highschool buddies setting up a gofundme page to help offset costs if a live donor is found.  Not sure if I can post that here.

Thanks for the kind thoughts and ell wishes

Parm
Definitely post it Parm.  You have friends here.  I hope you start feeling better soon.

 
Just waiting for my buddies for the link, as they are setting it up

Will post it when I have it

 
what a country :(

"This is a extremely difficult time for Parmcat and his Family as he must get sicker in order to move up the waiting list, and even then there is no guarantee that a liver will be found."

 
Last edited by a moderator:
mr. furley said:
what a country :(

"This is a extremely difficult time for Parmcat and his Family as he must get sicker in order to move up the waiting list, and even then there is no guarantee that a liver will be found."
That's not a USA issue.  No one has enough organs to transplant.

 
T-6 hours until I go in for the surgery.  I need to avoid this thread, because what Parm is going through is totally scaring the bejesus out of me. 

 
Stay strong, GB.  My father had a liver transplant in 2000.  Canada has a strong transplant system.

Thanks for the gofundme link.

 
T-6 hours until I go in for the surgery.  I need to avoid this thread, because what Parm is going through is totally scaring the bejesus out of me. 
One week post surgery and seems that things went mostly ok. Follow up appointment is today and I have what appears to be an incision hernia that I am going to discuss, it is painful and the rest has been pretty easy. 

The diet pre and post surgery really sucks and I am doing it somehow. If I would have been able to eat like this previously there would have been no need for the surgery at all. Two weeks of water and little protein shakes only and I am trying not to lose my mind.

 
One week post surgery and seems that things went mostly ok. Follow up appointment is today and I have what appears to be an incision hernia that I am going to discuss, it is painful and the rest has been pretty easy. 

The diet pre and post surgery really sucks and I am doing it somehow. If I would have been able to eat like this previously there would have been no need for the surgery at all. Two weeks of water and little protein shakes only and I am trying not to lose my mind.
Good luck.  I'm looking forward to when you change your user name to The Not So Big Guy.

 
One week post surgery and seems that things went mostly ok. Follow up appointment is today and I have what appears to be an incision hernia that I am going to discuss, it is painful and the rest has been pretty easy. 

The diet pre and post surgery really sucks and I am doing it somehow. If I would have been able to eat like this previously there would have been no need for the surgery at all. Two weeks of water and little protein shakes only and I am trying not to lose my mind.
Phase 2 post surgery diet in effect.  So I can add a yogurt to the mix and pureed vegetable soups to the protein shakes, but no real food yet.  In a couple of days I head into phase 3, where I can add in pureed fish, chicken and turkey.  So then we see how my stomach can handle food post surgery.  

I am losing about 2 pounds a day right now, which makes sense considering that I am still well under 1000 calories a day on this diet.  That is the happy thing that keeps my spirits up.  Clothing from before I started is loose and I am hesitating to order new, as the weight is going down a such a nice clip.  Weird problem to have, but there is zero way to complain about that.

 
Been a while since I updated my progress post surgery, so here we go.  Still losing weight at a fair enough clip.  I am down 70 pounds from my top weight and I guess 50 since surgery.  Still not able to eat like a normal person (solid food and normal looking meals) and have issues with throwing up at times.  Normally they would say that this is from overeating, but with me, it seems to be more about post nasal drip in my stomach and that doesn't go well with eating and even drinking.

But it is nice to discard clothing that no longer fits me and I am wearing things that I haven't worn in years.  So I have that going for me.

 
@The Big Guy - good luck man - what was your starting weight and what's your goal.  Sorry to hear about the trouble you are having but stick to the plan - we like having you around.
My top weight was 409.  That was before I started the program, but when I made the decision to go for it.  I am at 339 right now.  I haven't actually set a goal weight.  I know that sounds stupid, but I never really thought that far ahead with where I would be and when.  

 
Crap.  I haven't seen this thread in a long time.    Sorry to read all this from Parm -- last I knew he was post surgery and having issues but hadn't been diagnosed.   

Hang in there Parm -- sending good mojo your way.   :drive:

 
Crap.  I haven't seen this thread in a long time.    Sorry to read all this from Parm -- last I knew he was post surgery and having issues but hadn't been diagnosed.   

Hang in there Parm -- sending good mojo your way.   :drive:
@Parmcat 

Maybe i dont know how to read profiles but hasnt posted since april? Still shows logged in :shrug:  

 
@Parmcat 

Maybe i dont know how to read profiles but hasnt posted since april? Still shows logged in :shrug:  
Hey Guys,

I still here.  Not posting much.  I am still waiting for my liver transplant.  Every day is a struggle.  Constant pain, weak and wobbly legs, walking with a walker or cane.  Can\i sleep, headaches, vision is changing......

I never know when I get out of bed what kind of day it will be.

Then, there is the mood.  My mood has changed.  MY fuse is really short, and some days I snap pretty easily.  There are dark thoughts, and I try to stay away from them.  My support team is huge.  I am so lucky to be surrounded by an awesome family, and so many friends I have not seen for years, have come out of the woodwork to help and support.

I will try to keep this updated.  My GOFUNDME page has been a success, but no donors have been a match

Thank you for thinking about me!

Parm

PS...I will answer any questions if you want to ask....go ahead

 
My version is thankfully better than Parm's. I am down a total of 116 from my top weight and while there are still some issues that are annoying, I will take those semi minor things for the way weight is dropping off if me.

The caloric drop is something that takes sometime to mentally adjust to. Going out to eat means taking home leftovers (something that was never done before)  or ordering an appitizer only and still maybe not finishing that because you are full.

I have a friend who has eaten his way out of the surgery and I refuse to end up like that. Watching him cram fries down his gullet at draft night made me satisfied with my progress and reinforced my desires to get there. 

The surgery is only life changing if you change your life along with it. I still only eat between 1000 and 1200 calories a day and while I can have some grumpy moments, I can push through.

 

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