xxlilmissmorrisseyxx
New member
Hi guys.. I haven't logged on to this in a while but was just wondering if anyone has had a liver transplant? I am 20 yrs old have severe CF related liver disease and hepatocellular carcinoma (Cancer) on my liver and have been waiting almost 6 months for a transplant. I'm really frustrated now because while I am at the very top (No.1) on the list for my size, blood group and priority, I am getting sicker in the mean time. I am in and out of hospital every 2 weeks or so with recurrent chest infections and am just so fed up of it all!
I'm supposed to be working at keeping my lungs fit for surgery but because of the fluid I retain and the size of my liver and spleen not to mention my frequent episodes of DIOS, I am finding it hard to breathe sometimes and this is affecting my exercise tolerance and ability to mobilise but despite that, my lung function thankfully is 53% at the moment (baseline usually being about 60%) and SpO2 saturations are between 95 and 98%... but haemoptysis is a regular occurance and I'm on tranexamic acid to reduce the likelihood of a serious bleed as I had oesophigeal varices banded a couple of years ago and also have some in my bowl that aren't banded. At the moment I'm in hospital on IVs for yet another chest infection and DIOS.
I am underweight (48 kg or 105 lbs) , on PEG feed overnight and 4 high calorie supplement drinks during the day, as well as my own oral intake. I find it very difficult to maintain the weight as it fluctuates with the ascites (fluid) and my appetite in general is not as good as it used to be, I seem to have lost interest even though I love food., the enjoyment I once got from eating is gone. It's turned into a chore.!
I also have CFRD and am on an insulin pump. My blood sugars are eratic and impossible to control. Sometimes I get really insulin resistant for no reason, and my sugars wouldn't stabilise for days... then they return to normal again. My only reasoning for that I can come up with for this is that the liver and pancreas work together and one is failing, the other organ suffers along with it. As if the poor pancreas wasn't dodgey enough lol it doesn't make enzymes, it doesn't make insulin... what does it do?? ha. probably so damaged that it's replaced by fatty tissue by now.
I have a constant itch that never goes away and cannot be treated or helped with an medication.. Antihistamines will not work for it because it is not an allergy induced itch, it is caused by too much bilirubin in the blood cells. My skin is ripped to shreds <img src="i/expressions/face-icon-small-sad.gif" border="0">
I'm jaundiced. Yellow eyes and "tanned" skin. It's embarrassing and I wish it would go away.. it's worse when I get an infection. Also caused by bilirubin.
My tummy is MASSIVE because of everything going on there with the size of the organs and the fluid. I can't get clothes to fit me so I wear baggy stuff for my own comfort and to hide my belly.. it's had a huge affect on my confidence for many years but it is only now within the last 8 months that my health is deteriorating at a faster pace, that I've learned to accept it and deal with it and to not be ashamed. But nevertheless people still stare and make comments, I often get asked if I am pregnant and it does upset me when I see the looks and hear the remarks.
Is there anbody else in the same boat?? Would love to talk to somebody going through the same thing.
I get extremely fatigued and the lack of energy is unexplainable. I don't know what to do. I want to be fit for surgery when it happens but at the rate I can't help but worry that the call will come for the liver and I would be declared unfit. I would miss out on the opportunity.
I'm supposed to be working at keeping my lungs fit for surgery but because of the fluid I retain and the size of my liver and spleen not to mention my frequent episodes of DIOS, I am finding it hard to breathe sometimes and this is affecting my exercise tolerance and ability to mobilise but despite that, my lung function thankfully is 53% at the moment (baseline usually being about 60%) and SpO2 saturations are between 95 and 98%... but haemoptysis is a regular occurance and I'm on tranexamic acid to reduce the likelihood of a serious bleed as I had oesophigeal varices banded a couple of years ago and also have some in my bowl that aren't banded. At the moment I'm in hospital on IVs for yet another chest infection and DIOS.
I am underweight (48 kg or 105 lbs) , on PEG feed overnight and 4 high calorie supplement drinks during the day, as well as my own oral intake. I find it very difficult to maintain the weight as it fluctuates with the ascites (fluid) and my appetite in general is not as good as it used to be, I seem to have lost interest even though I love food., the enjoyment I once got from eating is gone. It's turned into a chore.!
I also have CFRD and am on an insulin pump. My blood sugars are eratic and impossible to control. Sometimes I get really insulin resistant for no reason, and my sugars wouldn't stabilise for days... then they return to normal again. My only reasoning for that I can come up with for this is that the liver and pancreas work together and one is failing, the other organ suffers along with it. As if the poor pancreas wasn't dodgey enough lol it doesn't make enzymes, it doesn't make insulin... what does it do?? ha. probably so damaged that it's replaced by fatty tissue by now.
I have a constant itch that never goes away and cannot be treated or helped with an medication.. Antihistamines will not work for it because it is not an allergy induced itch, it is caused by too much bilirubin in the blood cells. My skin is ripped to shreds <img src="i/expressions/face-icon-small-sad.gif" border="0">
I'm jaundiced. Yellow eyes and "tanned" skin. It's embarrassing and I wish it would go away.. it's worse when I get an infection. Also caused by bilirubin.
My tummy is MASSIVE because of everything going on there with the size of the organs and the fluid. I can't get clothes to fit me so I wear baggy stuff for my own comfort and to hide my belly.. it's had a huge affect on my confidence for many years but it is only now within the last 8 months that my health is deteriorating at a faster pace, that I've learned to accept it and deal with it and to not be ashamed. But nevertheless people still stare and make comments, I often get asked if I am pregnant and it does upset me when I see the looks and hear the remarks.
Is there anbody else in the same boat?? Would love to talk to somebody going through the same thing.
I get extremely fatigued and the lack of energy is unexplainable. I don't know what to do. I want to be fit for surgery when it happens but at the rate I can't help but worry that the call will come for the liver and I would be declared unfit. I would miss out on the opportunity.