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Old 07-08-2012, 03:58 AM   #1
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Focal Nodular Hyperplasia - Living with it.

Just over six months ago they found a large lump in my liver measuring 10 x 9 x 6 cm. After months of many tests they came to the conclusion that it was FNH and decided not to do anything about it. I've been in a long stuggle with doctors, I had it in my head that it would need to be removed from all the reading I've done, I've basically given up on seeing them.

I've been told its not growing but feel as though the pain is getting worse. Im currently taking tablets daily to stop incredible heart burn, prescription pain killers that make me dizzy, nauseous and tired. Sleeping tablets as I have been having a lot of trouble trying to lay down from the discomfort. I have also recently started anti-depressants. I can't drink, take certain types of pain killers, can't excercise without feeling like I can't breathe, consant pain under my ribs with the occasional sharp pain once a day or so. Every now and then I have bad days where it feels as though I'm being squished from the inside. I've also recently become extremely fatigued. I struggle to get out of bed daily. Not sure if this is related but im constantly at the physio from stress related pain.

I'm basically used to the idea that I'm going to have to live with this for the rest of my life. Although as I'm only 22 I'm worried about the effect all these tablets will have on me. All of my family and friends are telling me to not take them but if I don't I honestly think I would rather kill myself than be that sick. I also think its having an effect on a lot of my friendships as I'm just so tired I would rather stay at home then make an effort to see them, plus I work all during the week.

Just really wanting some advice on how to deal with it or other peoples experiences. I want to start excerising again and get my energy back so I can just get on with it. Any help would be much appreciated, I don't know anyone else who has FNH and feel like I'm on my own!

 
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Old 08-07-2012, 10:55 AM   #2
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Re: Focal Nodular Hyperplasia - Living with it..

you aint alone.. im 25 .. and found myine when i was your age.. mine is very large too... and im losing it too.. ill pray for you and you pray for me... no one understands it sucks so bad.. i have night sweats and severe pain in my abdominal area..the docs think im nuts the family thinks im a whinny whimp .. and im just miserable that im not my self

 
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Old 08-08-2012, 01:48 AM   #3
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Re: Focal Nodular Hyperplasia - Living with it..

Thanks for your reply. Its nice to know we aren't alone! Pretty sure my doctor thinks I'm crazy and just making it up. I've made another appointment and am going to demand a 2nd opinion with a private specialist. Its only getting worse and I can't deal with it anymore.

I used to have the night sweats. I felt like when I layed down is when I got heart burn and the night sweats would come with that. My doctor has me on nexium tablets I think they are called. Basically a heart burn tablet, and it has fixed that problem but I have to take those daily at the same time or I know I've got a long night ahead of me. I'm also on a pain medication, I think its a type of morphine but it makes me dizzy, but it does stop the pain for a little while. Do you have any other symptoms?

 
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Old 08-08-2012, 09:10 AM   #4
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Re: Focal Nodular Hyperplasia - Living with it..

yeah in the night time i wake up with the sweats ..i usually spend an hour at the least on the potty... !! it sucks.. i went to specialist and they say those are not typical symptoms.. so they dont see how the fnh has ne thang to do with my pattern at night .. so now i am going to at gastrointestinal for that .. i done went to a liver specialist but im wanting to go back to get it removed.. but im just scared...

Last edited by moderator2; 08-08-2012 at 09:53 AM.

 
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Old 08-09-2012, 02:21 AM   #5
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Re: Focal Nodular Hyperplasia - Living with it..

Funny thing is that they say those symptoms have nothing to do with FNH, yet I've had the same. Those nexium tablets stopped the heart burn, night sweats and sitting on the toilet half the night. Ive already had a colonoscopy and nothing showed up abnormal.

Just from reading I think iron deficiency is also common with FNH.

It is a big move to get it out, I'm scared too. But im so excited about not feeling sick 24/7 and going back to being normal! I just want it over and done with.

 
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Old 08-09-2012, 05:39 AM   #6
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Re: Focal Nodular Hyperplasia - Living with it..

well that makes me feel alot better... knowing you had the exact same symptoms.. i think ill make the move to remove it and if the same things keep happening then ill know its something else... Did your doc know that the sweats,pain and bathroom usage was from the fnh? Thank you so much for talking with me .. keep in touch.. and i hope you feel better soon!!

 
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Old 08-10-2012, 01:57 AM   #7
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Re: Focal Nodular Hyperplasia - Living with it.

No my doc didnt know. My local doctor has never heard of it before and the one specialist Ive seen tried to tell me that nothing I was feeling was caused from the fnh lump. I've since done a lot of research and many girls had the same symptoms as me, so I know its not just me! Not to mention the medication my local doctor gave me helped. Now that I've seen the MRI I know exactly what I'm feeling as I know where exactly the lump is, don't let them try tell you you dont know what you're feeling.

Im heading back to my doctor next week to demand for a referral to a private liver specialist. I'll let you know if he says anything that may be able to help you also. Keep in touch, and good luck to you too!

 
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Old 08-14-2012, 11:05 AM   #8
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Re: Focal Nodular Hyperplasia - Living with it.

alrightly .. and i would greatly appreciate it if you let me know what he thinks.. thaks so much and i ll do the same

 
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Old 08-23-2012, 03:42 AM   #9
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Re: Focal Nodular Hyperplasia - Living with it.

Well I've been to see a liver specialist, but she wasnt a surgeon.

She took heaps of notes, listened to every symptom and said that she thought the answer wasn't by taking tablets and also said that there are a lot of risks with surgery. She then referred me back to the surgeon I first seen. Ive now made an appointment with him in a few weeks, he doesnt need me to get another MRI, but the receptionist said that he would explain everything to me. So not sure if it means they will go ahead with surgery but I feel like I might have gotten somewhere. My appointment is in 3 weeks so will let you know if they say anything more.

If you really think the pain is from the FNH lump maybe you should just demand for a referral to a specialist?

 
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Old 09-26-2012, 02:07 AM   #10
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Re: Focal Nodular Hyperplasia - Living with it.

I've had my 2nd appointment with the surgeon and the operation is booked for December! The end is in sight

 
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Old 12-15-2012, 02:25 AM   #11
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Re: Focal Nodular Hyperplasia - Living with it.

Hey, I'm new to the board, but am having the exact same symptoms as both of you. Fever, night sweats, horrible upper right quadrant pain (has progressively increased) and docs say my fnh wouldn't be the cause of all of this (with the exception of my primary, she thinks it is the liver, since we've ruled out everything else.)
Did you have your surgery yet, and if so, how'd it go? I'd appreciate any insight you have. Thanks so much!

 
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