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  • Adenomas/ FNH Support (take 4)

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    Old 04-29-2008, 07:34 AM   #1
    Sam403
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    Adenomas/ FNH Support (take 4)

    Hi Ladies - I just happened to be on after the moderator closed the last thread, so I hope you don't mind me taking the opportunity to start the new one as I understand this to be a great honor. Hope I do it justice!

    Juliet - My thoughts and prayers are with you and your family. One thing I have realized is the amount of strength you and your loved ones have at these times. God bless.

    Ashley - My mom is an apparent advocate of the healthcare system here (She worked in it for 35 years) and actually told me to stop bugging the doctor! Still a bit miffed at her for that. I'm going to another doctor to see if she will refer me to a liver surgeon still.

    Jennifer - Welcome! I hope you find the support that I have from these lovely and kind ladies!

    Nessie - Thanks very much still trying to stay positive and get a second opinion from another doctor..They don't even have to do anything I did all the leg work for them!

     
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    Old 04-29-2008, 08:06 AM   #2
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    Re: Adenomas/ FNH Support (take 4)

    hey there again
    number 4!!!!!!!!!!!!!!!!!!!!!

    juliet - i would love to come over there right now!!! my appt was last thurs hun - all ok FNH and next scan in sept. glad i answered THAT question for you. its amazing how those things that we dont quite know how to ask seem to pop up! i will give him a boot with my good foot. i actually gave him the silent treatment last night - dont normally do that as im not a sulker but it seemed to work. he has called today and been very nice , hmmmm i wonder what he is after!take care mate hope your getting some good sleep!

    beth - yes a boot up the backside with my good foot!! glad your doing ok, not long now . i feel so tired today so i have painted my nails(manicure) and they look all lovely. im out with the girls on thurs so at least i have nice nails. its so wierd before surgery my nails and skin were horrible, but now they have got so much better and my hair is thicker and gone curly again! out come the straightners!

    jennifer - welcome hun! as katie said you dont have to look "ill" when you have an adenoma. get a second opinion hun and do they know for sure its that?? as for recovery i am nearly 7 weeks out of an open resection. i can move around but my abdomen is very sore and i feel like i have done lots of sit-ups! i am a very active and fit person normally and i have lost the bit of tone i did have before surgery from being a lazy cow. i try and walk every day but stretching my abdomen or having that morning stretch is not happening yet. i was told off work for 3 months! i will see how i go i may go back end of may and phase myself back in. to be honest work call me every day at least 3 times so i do not feel i have been away! it will take time to be back to your normal energy levels but everyone is different. the fatigue is bad some days. take care and keep us posted.x

    cailea - hope you can post soon - need to know all the gory details!

    stacey - where are you hun?????
    sam - lucky you starting new thread. i too had to do all the running around with my docs - they should have deducted it from my bill!!


    sorry to harp on but still no period for me????? does surgery normally have this effect??
    nessie x

     
    Old 04-29-2008, 09:15 AM   #3
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    Re: Adenomas/ FNH Support (take 4)

    Juliet..If I were a rich woman, I would be on a plane to see you today. I am so sorry about your Dad and what you are going through with him. I am amazed how much we have in common. My Dad sent me an email to tell me he has lung cancer 18 months ago. At that point we had not spoken in 3 years. I know it is so messed up and you don't have these emotions you think you should have about everything that is going on. I am sending you the biggest hug from around the world right now! I am here for you!
    Jennifer, welcome to our group. You are doing the right thing by looking for a liver surgeon. Find the biggest teaching hospital you can by your home, the doctors see these lovely tumors everyday. I am having a little better time with recovery. My surgery was done hand-assisted laposcopicly,so I am 4 weeks out and back to work...desk work only. I will be going home early all week, but I am making it. But don't listen to me...the girls are mad at me.
    Beth, I am sorry you are feeling sick. I am sure your nerves are not helping at the moment with all your stomach issues. Stress does crazy things to us. Hang in there dear..only 4 more weeks for you!
    Sam, keep at it. I hate that you have to push so hard to get answers, but it is good to be educated and know what is going on with our bodies. Keep in mind that many times, they have no idea what is going on without a biopsy. I am sure things will kick into high gear after you get it done. Nice job on the new thread!
    Nessie, bless your heart. I am the same way about my house, it makes me crazy when it get messy and dirty. My boyfriend, Will, has a new, high tech vacuum that only he uses, so I don't have to vacuum anymore. haha I have not really started cooking yet, but I am sure I will get there. My kids are good at finding something, but I think all they have eaten is crap food, so it is time. I am glad you have your scan dates and you are feeling better about all that. You need to put some meat on your bones and aunt flow will come back, I bet is in not all due to surgery.
    Cailea, prayers going out for you!
    Stacey, how you doing? Hope you are ok!
    Linda, I know you get on to read. I miss hearing from you.
    Juliet, you are in my thoughts and prayers. I understand what you are going through more than you know.
    Hugs,
    Katie

    Last edited by kt8889; 04-29-2008 at 09:17 AM. Reason: forgot something

     
    Old 04-29-2008, 12:18 PM   #4
    AMinNJ
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    Re: Adenomas/ FNH Support (take 4)

    Hi everyone,

    My name is Angela and I live in NJ. I am 42 years old and the mother of 4 year old twin boys. I found out last week after an U/S and subsequent MRI that I have 3 tumors in my liver. The radiologist says they are most likely benign, either FNH or adenomas, but my gastroenterologist suspects hemangiomas and is sending me for a Nuclear Medicine RBC Scan in two weeks. No one seems to know anything for sure, and from what I'm reading here, that is not uncommon. I am going to follow the advice I've read here, which is to find a liver specialist/surgeon to help me with this. Does anyone have any recommendations on how to find the best liver specialist/surgeon in the NJ/NYC area?

    I'm very distressed about this. So glad to have found this board!

    Angela

     
    Old 04-29-2008, 12:32 PM   #5
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    Re: Adenomas/ FNH Support (take 4)

    Hi Angela and Welcome...no you are not alone. You need to find the biggest teaching hospital in your area with a liver transplant unit. These doctors see this stuff everyday. Keep in mind that with many of these tumors, you can have every scan in the book, but it hard to tell what they are without a biopsy.
    Glad you are found us, we are glad to answer any type of question the best we can.
    Katie

     
    Old 04-29-2008, 01:48 PM   #6
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    Re: Adenomas/ FNH Support (take 4)

    Sorry to be a downer but I am having horrible pains in my side after my liver needle biopsy yesterday. Also, some shortness in breath. Anybody ever had these symptoms? No fever but very uncomfortable. Feels like labor pains!

     
    Old 04-29-2008, 02:04 PM   #7
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    Re: Adenomas/ FNH Support (take 4)

    Hi Ladies - Lestex I hope you feel better soon. I would go to the doctor again if it persists. I have been doing some reading on the biopsy and they said that the people generally are okay the next day but then again people like us were the 1 in 100,000.

    I now have my biopsy date of May 12 and I am scared stiff! I know it's a necessary evil to find out what's going on and treat it but I can't help it. The good news is my sister is coming down for it so she and my mum will be there for me. I wish I didn't have to go through this I feel like crying. I think it hit me now and all my other ranting blogs seem so trivial now.

     
    Old 04-29-2008, 02:17 PM   #8
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    Re: Adenomas/ FNH Support (take 4)

    Lestex, I would give your doctor's nurse a call. I only had the lapo. biopsy, so I am not sure. Beth had a needle biopsy, maybe she will get on here. But by 4:00, would try to call you doctors office just to ask if she doesn't.
    Sam, we soo understand how scared you are. I will send out some prayers for you, this is all scary stuff, but we can handle it. As Beth told me a long time ago, wine and chocolate help soooo much.
    Hugs,
    katie

     
    Old 04-29-2008, 02:30 PM   #9
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    Re: Adenomas/ FNH Support (take 4)

    I agree on the wine and chocolate part katie. I don't even like chocoolate..but lately it is never tasted better! And wine...well I'm only 20, but I'm in college, so..you know.

    Anyways, I am still naucious today. I think it does have a lot to do with the location of my tumor on the left side...because I have never had these problems. May 12th couldn't come any sooner!!!!

    Nessie- I have actually lost a lot of weight as well. I am and pretty healthy 20 year old. I mean..I'm 5'8 and weight 140...but in the last month I have dropped down to about 127. The wierd thing is..I used to play college volleyball and I quit and haven't been working out. And, I am still eating the same amount. So I'm not sure why the loss in weight.

    Lestex- I agree in that you should call your doctor. That doesn't seem normal....well the pain might be expected..but the shortness of breath certainly not! I will keep you in my prayers.

    Sam- I am glad you finally have a biopsy date!! It is the same day I am meeting with the surgeon!! That will be a big day for us both!

    Keeping everyone in my prayers
    Everyone keep your heads up! We are strong women....and 1 in 100,000---(if those statistics were for winning the lottery..I would say we were pretty lucky)!

     
    Old 04-29-2008, 05:28 PM   #10
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    Re: Adenomas/ FNH Support (take 4)

    Hi all...

    Nessie, thank you for THAT info. very helpful! I figure that pregnancy is not going to sound that appealing at 8 wks. post-surgery, but the surgeon told me the same thing that you did -- as I would not start to "show" for another 8 wks or so, then I should be healed that much more then. we'll see how it goes...I would not worry too much about not starting your period. When you go through something that the body perceives at "trauma", it basically shuts down your reproductive capability for a while b/c it perceives it not to be a "safe" and good time to be pregnant. I have skipped a period when I have been very sick before and also when I have been snow skiing for many days straight -- the body feels it is under extreme, "not ideal for being pregnant" conditions and does not release an egg.

    I have also lost weight due to my tumors and have had friends comment on it recently. Very frustrating, especially since I've always taken care of my body. I have had to explain that I am NOT trying to get thinner!! I have nausea on and off and sometimes food goes right through me. Some days are good, some days are bad. No rhyme or reason for it. I am worried about losing too much more right after my surgery. How long did it take until you were able to eat "normally"? What were you eating in the interim?

    Many newbies this week...Big Hugs out to you guys...this is a great group to be a part of during this very stressful time... I hope that I can be as helpful as everyone has been to me.
    Juliet -- you are in my thoughts... extra hugs for you over there...
    I hope cailea is ok...thanks for keeping us updated...
    Arlyn

     
    Old 04-29-2008, 05:39 PM   #11
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    Re: Adenomas/ FNH Support (take 4)

    Lestex, that is how I felt. More so on the day of than the next day but I felt like breathing was very hard and the pain was terrible. I came home took a pain pill and went to sleep. After two days it was better but sore. I think the needle hurts the diaphragm. If it is not better soon, please call your doctor. I thought I was being a total wimp since my doctor was pretty casual about it. You are having a little bleeding into your abdomen...hence the pain. If no improvement call your doctor.

    Sam it is good that you have a date for the biopsy.

    Angela, welcome. I am sure there are a ton of liver specialists in the NJ/NYC area.

    Katie how did work go today?

    Juliet, you ok? Should be morning there. I hope you are ok. I am thinking of you.

    So wish I was losing weight!

    Best to all!
    Beth

     
    Old 04-29-2008, 05:39 PM   #12
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    Re: Adenomas/ FNH Support (take 4)

    Angela,
    Have you had any symptoms from your lesions? Is that why you went to the gastro dr.?

     
    Old 04-29-2008, 06:52 PM   #13
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    Re: Adenomas/ FNH Support (take 4)

    Hi everyone,

    Katie & Beth: Thanks for the warm welcome! So happy to have found this board. I have been very scared, and have found you all to be very reassuring and informative.

    granolawife: I had been having an odd feeling of discomfort in my upper right abdomen (just under the lowest rib) for about a year. Sort of a vague pain, felt like something was in there. I spent a lot of time touching the spot, and my husband kept telling me to "stop it, there's nothing there." I mentioned it to my gastroenterologist, and he felt my liver and said it was normal. Then one of my sons accidentally kicked me in the ribs a couple of months ago and the pain was horrible. It was still hurting a little when I saw my Primary Care Physician to follow up on some bloodwork that showed I was anemic, and she sent me for an U/S, which showed the largest lesion (just 2.8 cm, a baby compared to some of the ones I've read about here!) in my right lobe. MRI a few days later revealed two additional smaller lesions (approximately 9mm) one in my right lobe and one in the left. The MRI report was not definitive but stated that the lesions were most likely benign FNHs or adenomas. I called my (clueless) gastroenterologist who reviewed the MRI report and insisted they were hemangiomas, not FNHs or adenomas. He also told me there was no way I could have been feeling them and said it was probably acid reflux instead, gave me some free samples of some new reflux medicine (while he was still chewing one the free danishes the drug rep had brought him). After I left his office, I called the radiologist myself and he said the lesions are absolutely not hemangiomas. Time to find a real doctor! I have put in a call to NY Presbyterian/Columbia Medical Center in NYC and hope to have a consultation soon.

    My U/S was Friday, and my side is still hurting very badly (today is Tuesday) from all the probing. Hope it stops soon because it will be so much easier not to panic about all of this.

    Again, not happy to have this problem, but so happy to have found you ladies.

    Angela

     
    Old 04-29-2008, 07:51 PM   #14
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    Re: Adenomas/ FNH Support (take 4)

    Angela- Welcome! I'm pretty new here to! From the sounds of things you are right..your doctor is clueless!! Good thing you are getting another one. I think its funny when almost everyone I've read about says they have a little or a lot of pain..and almost every doctor says there is no pain associated with the tumors and tries to blame in on something else.

    Granolawife- I have the same responses from my friends and family that you do. I went to see my mom this weekend and she was like, you lost so much weight! Ah, its not cause Im trying Im just always naucious! ?

    AnywaysIm so glad I found this board a couple of weeks ago. All of you are amazing!

     
    Old 04-29-2008, 09:20 PM   #15
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    Re: Adenomas/ FNH Support (take 4)

    Angela, I've been through 3 doctors locally that I was not comfortable with and finally ended up having to go out of state for treatment at a major university liver center. I felt that I knew much more about my condition than the drs. I saw locally did. Definitely get as many opinions as you need to feel comfortable with your diagnosis and plan!! Please keep us posted...and fyi-- while the liver itself does not have nerve endings, the capsule that it sits in does and can certainly cause pain!

    Ashley -- I have found that hot ginger tea helps my nausea...I get one almost daily at starbucks in lieu of the lattes I used to get. seems to help most of the time

     
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