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To Others In The Same Boat...

I'm 25yrs old and have liver disease caused by Porphyria (a hereditary disease). Liver disease isn't pleasant. The jaundice and ascites turns you into an oompaloompa (willy wonka reference). Just carrying that extra weight around is a strain alone. I once had 16L drained from my abdomen in one sitting. That’s like walking around with a 16KG bag!!! Big for me, maybe small for someone else. After that there's the fatigue and nausea to battle. Fatigue comes with liver disease. There's days when I’m sick of seeing the same four walls but can't find the motivation to move. I'm too tired. Or too sick. Or there’s days when I may 'look' ok and be up doing small things, when I stop, I STOP. There's barely energy left to cook myself meals, net alone clean up too. So finding energy to keep the general house cleanliness up is non-existent. With liver disease also comes confusion. I often need to right everything down or keep things I need to remember in eyesight, otherwise the dates just blend or I forget completely. When it gets hard being stuck at home with no energy... I focus on the fact at least I’m not stuck in hospital. I'm in my own space... surrounded by my own belongings and the smells and sounds that are familiar.

Liver disease and what comes with it takes its toll, physically and emotionally. My family are of great support to me, especially my partner and mum. I have a great dog which is very much trained as a care dog. She is my small companion, who plays when I have energy and sits quietly by my side when I’m tired. She comes and lies against me when I’m sick or sad... I know she gets it. But friends wise, I am surrounded by young and healthy people living busy and active lives, who haven't had to spend time with an illness. They are there for me the best they can. Still, there's no way they can get it. That’s why I came to this site. To reach out to those who have spent time where I’ve been... I just know it's easier to keep fighting when I have people there beside me.

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MsMidnight MsMidnight 22-25, F 3 Responses Sep 5, 2010

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Thankyou for your comments. It's nice get a responce from people who know where i'm at. Sadly, i have had to accept nausea as a part of my life. My day out yesterday turned into 1.5hrs out, including a 20min nap in the car, followed by 3 vomits on the car ride home. Even the best made plans can be spoilt by nausea and fatigue. But these days i'm prepared. Hospital vomit bags are stashed in my glove box, handbags, buckets under both sides of the bed. On a good day i forget they are even there. but when i need them i'm ready. Basically i live off stemetil. Do antinausea meds help you? If that doesn't work i use Zofran Wafers, they dissolve under the tongue so are guaranteed to get into the system. It's my backup. lol. Does anything help for you? I find i'm more nautious if i haven't had enough sleeps. And i NEVER let my stomach be empty. I find i feel sick if i'm hungry. So i eat small protions as often as needed. I've always got a meusli bar in my bag just in case. They're my tips anyways. :)<br />
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It was nice to hear from a family member of someone with liver disease. I hope your aunt is well. I like that you are having family discussions about it. I know that it's not just me going through this. My illness also effects my partner and family esp. both physically and emotionally. For a long time i didn't think about that. I just felt like i was going through it alone. And at the same time i also had times when i didn't say how i was feeling. I didn't want to worry them, or it seemed it'd just be complaining about the same thing anyway. I think talking about illness is important, everyone's being effected by it in some way, i think talking about it with those around me has helped allow me to feel like it's something we are going through together.<br />
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As for the challenes that come up being 25 and living with liver disease... there are many. All i have to do is ask my friends what they are up to and i know my life is different. But there is always someone out there who has it worse off then me! I try to remember that. It was an 11yr old girl who taught me a real lesson in life. She has a severe heart disease which means any time she gets over excited, her blood pressure goes sky high and she blacks out. She loved soccer so much. Knew all the best pla<x>yers and knew all the ins and outs of the game. But she had never played her self. She couldn't. Running was too much, net alone the thrill of playing. I ask her how she deals with that. It was like i had just asked her a really stupid question. Her responce " it's not my life. I know i can't play so i just don't." she loved soccer, her life limitis meant she couldn't play, so she didn't let herself focus on that. She focused on what she could do, and that was being an amzing soccer fanatic!!! My lesson from this, spend less time wanting what i know i can't do... it's wasted anyway. My life, although limited, has great potential. I do what i can and get pleasure from that. :) Take care all.

Thank you so much for sharing your story. You are very eloquent, and seem to be gifted in expressing yourself. My aunt is exactly where you are now, but the key difference is she is a woman of sixty five- and she is getting about 3 litres a week out. She has started some heavy duty diretics to help her out, and is in the adjustment phase. <br />
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We were talking about our families liver issues quite a bit recently- and I cannot imagine the frustrations of a 22 year old woman with this issue. <br />
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In sharing your story please know that you have helped give me some new resolve to make choices I still have the luxiury of making while I can. <br />
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I wish you the very best as your continue to live with this condition.

Your story was truly inspiring to me... my God , it is my life you wrote down. To the very letter. Im so blessed to have read it after such a rough night. My nausea has been awful the last 5 months or so, and they are running test after test. But Im starting to feel like it is justs something Ill learn to deal with , but , I hope not. Please forgive the lousy typing , been a long night like I said:):):)... Im 41 and feel like i have led a full life , I cant imagine what youre going through in your short years. I feel that you are very wise in spirit though. You have had to be so strong, I know. Thank You , perhaps we can become pals in this battle.