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    Old 06-19-2008, 06:36 PM   #1
    kt8889
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    Adenomas/ FNH Support ( Take 7)

    Wow, ladies, we close threads quickly these days. So glad we are here for each other.
    Tina, honestly, I had a very large tumor, but I had the easiest surgery of all the wonderful ladies on here. Mine was done hand assisted laposcopicly. I only have a 4 inch incision and 3 one inch incisions. I did not go to ICU at all. I did not have an epidural, I went with a pain pump and medicine ball that gives pain meds. directly into the spot. I was in the hospital same as Ashley, 4 days. I went in at 6:00 am with my family, surgery time at 8:30. By 7:45 or 8:00, they start putting in IV's and getting the good drugs. I was told I would be awake for the central line, as I think we all were told, but I don't remember it at all. I do remember joking with the nurse that I needed more drugs before they did it. And of course, the nurses are fine with that, they are going to knock you out anyway.
    Others have very different stories then me, and the biggest difference is they kick you out of the hospital much quicker here in the states, but we all did great. Just some ups and downs like Arlyn says, but fine. It is our bump in the road and it makes us stronger.
    I need to go to bed, so more later. Sorry if I did not answer all your questions. Ask us more and we will answer the best we can.
    Hi everyone, more tomorrow!

    Hugs,
    Katie

     
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    Old 06-19-2008, 06:58 PM   #2
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    Re: Adenomas/ FNH Support ( Take 7)

    Hi! I'm new here. I am so grateful to find this place! I've been reading through old posts but am wondering if anyone has experienced a rupture of an adenoma.

    After getting very seriously ill in March and slowly recovering, I think I have finally been correctly diagnosed. One day in March, after having no pain or symptoms whatsoever, I started to feel sick and within hours was experiencing unbearable pain. It started up high, I felt a sensation of extreme fullness in my upper body and swallowing was difficult. I vomited twice and the pain moved lower, into my belly. It became extremely distended - like I'd swallowed a basketball, and very painful to the touch. After feeling like this for a few hours I went to the ER. They said I was dehydrated and gave me IV fluids, plus lots of different medications for the nausea, cramping, and the general pain I was experiencing. The pain stayed very bad and my belly tender for the next 10 hours, but gradually lessened. All of my blood work came back normal, and the ER doctors seemed stumped as to what was wrong with me. They did a CT, which showed a mass on my liver and some fluid in my pelvis. They said I must have had a burst ovarian cyst, and that incidentally I had a hemangioma on my liver which was unrelated but I should follow up on.

    As soon as I got home from the hospital I started having horrific diarrhea. This continued for 24 hours, then I seemed to recover. I was fatigued and sick to my stomach but not in much pain and able to go to work for the next 10 days, when the entire thing happened again - the horrible pain, tenderness, vomiting, followed by diarrhea. I went back to the ER, and they immediately said it must be a parasitic infection (I was out of the country 2 weeks before this all started). They took a stool sample, which came back negative, but they said sometimes parasites are hard to test for. They gave me an antibiotic and sent me home. After 10 days on antibiotics, I felt worse. The distension and tenderness went away but I couldn't eat anything, even drinking water made me feel full and nauseous. I saw a gastroenterologist who agreed it was a parasite and gave me another course of more powerful antibiotics, he also looked at the liver mass on the CT and told me to get an MRI just to make sure it was a hemangioma. He said it was completely unrelated to my other symptoms. I submitted 2 more stool samples which also tested negative for parasites. After finishing the second course of antibiotics I finally started to get better, and eventually felt back to normal except an occasional dull achy-ness on my upper right side and feeling full more quickly than I used to.

    I got the MRI, and the gastroenterologist told me it was actually a hepatic adenoma. He told me this made things more complicated, and that surgery wasn't a good option because of where it was located. He said it was 6.5 cm, and that since I'd gone off birth control when I got the first CT result it might shrink. He said to wait 6 months and get another MRI.

    I got a second opinion from a hepatologist this week and she completely stunned me. She said she thought my symptoms were all due to the adenoma rupturing and bleeding, and that the pain I had experienced was too intense to be from a parasitic infection. She wants me to get a scan with some sort of nuclear medicine to rule out FNH or a malignant tumor, but she said she strongly suspects an adenoma and that it will have to come out. This makes a lot of sense to me in light of the parasite tests all coming back negative and that unexplained fluid found in my original CT (it never really made sense to me that it was ovarian given where the pain came from). On the other hand after dealing with this for months I'm wary of believing anything. Has anyone else experienced something like this? Sorry for being so verbose!

     
    Old 06-19-2008, 07:23 PM   #3
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    Re: Adenomas/ FNH Support ( Take 7)

    katesela, WELCOME! I am so sorry for what you have been through and I am so sorry you have to join our club, but we are a wonderful bunch of women that all have had or have FNH or Adenomas. Linda had one rupture and she explains it as the most intense pain she has ever gone through. I think Nessie had one rupture too. It sounds like you are with the right doctor now. We tell women, find the biggest teaching hospital in you area and if they have a liver transplant unit, these doctors are the best. We have heard stories like yours before, much of the medical world has never dealt with these lovely tumors.
    Linda, can you help out with your rupture story!?
    We have been talking on here every day from about January on. Many have had surgery already and a couple are still waiting and we are still here to support women like you that are just finding out. The original thread Adenoma vs. FNH was started in 2003. There are a few women from the original thread that stop in to say hello still.
    Ask us questions, read through post and we are here for you. Tina just joined us this week too! We had all gone through this and I think we have all had a little differences, but we support each other with the mental and physical stuff.
    More later, again, sorry you have to join, but we are glad you found us!

    Hugs,
    Katie

     
    Old 06-19-2008, 07:58 PM   #4
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    Re: Adenomas/ FNH Support ( Take 7)

    Thanks Katie. I feel so relieved having found this group - since getting the diagnosis Tuesday it's all I can think about, I have so many questions racing around in my head. Reading everyone's experiences here and seeing how so many of you have come through surgery like champs is really inspiring.

     
    Old 06-19-2008, 10:27 PM   #5
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    Re: Adenomas/ FNH Support ( Take 7)

    Take 7 already??

    Katesela, welcome to the FNH/Adenoma Club! Mine was diagnosed after it ruptured a year ago. I know exactly the pain you are talking about, extreme pressure in your chest. Did it feel like your clothes were too tight? I remember feeling like I had a big gas bubble, so I chewed on some Tums and took a Nexium. I also had intense shoulder pain, and then pain in my right side. It became so intense that I was in tears and ended up going to the emergency room. They did an ultrasound, CT and chest x-ray, and saw that I had internal bleeding. I was lucky (as noted in previous posts) in that the bleeding was contained within my liver, but it was pressing on my diaphragm, making it extremely difficult to breathe. I remember how hard it was just to walk to the bathroom! I practically hyperventilated. The doctors (er, surgeon, and internist) kept asking me what I did to cause the bleeding, but I told them that all I did was run with the dog, who yanked on the leash and tripped me. One of them must have known what it was because he told me to stop taking birth control pills immediately. It wasn't until I went back for a follow-up CT six weeks later that they had their suspicions about hepatic adenoma. Another CT a month later confirmed the diagnosis, and I was referred to the liver specialists at UC San Francisco. I was supposed to have surgery in December, but I am now waiting to see what happens. The adenoma is not as large as originally thought, but I do have three of them. I would rather have them out and not have to deal with all the radiation exposure from regular CT's! My next tests and appointments are in October, so I'm just enjoying life and having fun in the meantime.

    As far as the weight issue that was mentioned on another post, I am there with a few extra pounds. I like to call myself curvy! And did I mention that I wear a D cup bra? Just thought I'd throw that out there again for you small-busted girls! My hepatologist says that my liver issues do not affect my weight, but sometimes I wonder. I work out every day and try to eat right, not too much, yet I still struggle with extra pounds and not being able to lose them. In order to lose weight, I have to cut waaay back on my calorie intake, and then I'm hungry all the time. I guess I'll just have to suck it up so that I can lose some more weight.

    It's late and this has turned into a long post. Good luck to everyone, you are always in my thoughts and prayers.

    Linda

    P.S. I don't get to see Dave this weekend, he's super busy with some changes he's making to his house, and his son is with him all weekend. We haven't reached that point yet, where I meet his son. We'll see... I do get to see him next Wednesday. I have to meet with my manager up at her house, which is only about 15 minutes from Dave's, so we're getting together for an early evening hike and picnic. His idea...so romantic!

     
    Old 06-19-2008, 11:28 PM   #6
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    Re: Adenomas/ FNH Support ( Take 7)

    Linda, all this D cup talk makes me jealous - from the B cup in Australia Glad you're seeing Dave soon, say from us!!
    Welcome Tina and Katesela, it's so horrible that you're going through this - my surgery is one week away today...Tina, with the time difference, you and I will almost be going in at the same time! It's a very stressful time and I understand exactly how you feel. Katesela, I haven't had a rupture but my adenoma is a little different and has a part that protrudes from my liver - if it ruptured, I could bleed out very quickly. Mine was found nearly 4 months ago but am only just having surgery now because I decided to shop around for surgeons - not always a good idea! Am very confident with my surgeon now though, he's wonderful.

    Had my appointment with the anaesthesiologist (sp?) and that was good but really quite scary. He can't give me an epidural because of my surgery, so I'm having a pain buster, the same as Katie. I'll also have a pain pump of fentanyl - but get this (the scary bit), I'll have a constant infusion of fentanyl and ketamine (this drug sounds scary to me) because of they believe that it's going to really upset my thoracic injury and my back pain will probably be worse than the liver pain. Has anyone else had ketamine thrown into the mix? I'm a bit apprehensive about this. When I brought it up, he said that controlling my back pain was very important because they would need to get me out of bed asap and do lots of breathing exercises because I have limited movement in my ribs (I breathe shallowly since my car accident because I have pain that wraps around my ribs). I'm really nervous now and scared too. I know it will be ok but this does sound like a lot of pain killers...or maybe I'm over-reacting?

    I'm going on and on...sorry and I haven't welcomed you new ladies properly - please don't be scared, i'm having a bad day but deep down I know it'll be ok.

    How is everyone else?

    Nessie, go the tatt - we should all get one to mark this time in our lives.

    Katie, definitely on the Ohio bit, 100%.

    Ashley, glad you're ok, you sound great.

    TOO stressed, so going to head off. Love you all jx

     
    Old 06-20-2008, 01:55 AM   #7
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    Re: Adenomas/ FNH Support ( Take 7)

    Hi All,


    cailea checking in!!! I am currently in Brunei airport (very humid ) in transit to Heathrow. Only another 16 hours of flying to go, yeahhhhhhhh!!!...LOL Incision is holding up just fine and absolutely no pain. So Juliet I reckon you can do the US!


    Arlyn - 6/7 weeks to feel aches and pains free and have significantly improved energy. At 2 weeks I took an hours train ride and had lunch with Juliet. She can attest to how I was. I guess I could entertain at 2 weeks as long as someone else cooked and they didn't stay too long. About 4 weeks I felt a huge amount better and that is when I pushed myself and ending up setting myself back. As Beth said as boring and frustrating as this is, try and take it easy. It will be quicker in the long run.
    I also suffered from intense pain in one place and bad nerve pain where my entire abdo felt like it had 3rd degree burns. Like everything else with this recovery it will pass....in time. Arlyn, you will get aches and pains in places that have nothing to do obviously with the surgery so try not to worry.

    Juliet - I was off pain meds completely about 5 days home from hospital, so 10-11 days altogether. Make sure you express all your concerns to the anaethatist (I can't spell it either..haha) and make sure both your mum and Pete know the plan of attack and can make sure no-one deviates from it.

    Linda - I am jealous, a new romance is always nice! ;-)

    katie and nessie - huggs for being the ones left that went first. A great help to all of us who have been through it since.

    Ashley - good to see you are home so quick. A liquid diet for that long though? How on earth did/are you getting any pain meds if you can't eat?

    better go....a shower and onto the next plane.

    Lots of love,

    cailea

    P.S. Juliet was good to talk today, will text/email from London. Hang in there girl x

     
    Old 06-20-2008, 01:57 AM   #8
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    Re: Adenomas/ FNH Support ( Take 7)

    I always forget something.......

    A huge hello to all the newbies!! These women are fabulous and will answer any and all questions, they did for me.

    cailea

     
    Old 06-20-2008, 03:13 AM   #9
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    Re: Adenomas/ FNH Support ( Take 7)

    Hi, ladies!
    It's the middle of the night and I can't sleep and I thought I would try Healthboards again, after a couple of years of not being in touch, and see what came up when I entered "hepatic adenomas."
    I was diagnosed with multiple HA's about three years ago. The docs believe they are a result of long-term birth control use (something I never heard about or read about in those drug inserts.) I had been taking BC pills for 30 years. The largest of my HA's was 8 x 7 cm. I was scheduled for surgery in August of 2005. I decided to get a second opinion at the Mayo Hosp., Scottsdale (where we live.) This doc suggested I get off the BC pills, which I had already done as soon as I received my diagnosis, and see what the tumors would do, since I had not had any other symptoms, and no bleeds. (The HA's were discovered through routine blood work for cholesterol.) The doc at the Mayo Hosp. suggested I NOT have surgery until I gave the HA's a chance to shrink and he felt very positive that they would do so now that I was off the BC pills. Because I was otherwise healthy and asymptomatic, rather than have surgery, he suggested monitoring the HA's through MRI's and US and see what they do.
    Fast forward 3 years.... the smaller tumors have disappeared and the largest one is now 6 x 4. I feel great and am so glad that I did not have surgery. I still continue to monitor my HA's through regular ultrasounds and blood work.
    So there's my story, at least to this point. I hope this will help someone who is trying to decide about surgery and is asymptomatic, as I was.
    Nancy

     
    Old 06-20-2008, 06:14 AM   #10
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    Re: Adenomas/ FNH Support ( Take 7)

    Thanks for the welcome, all! It's so nice not to feel alone in this.

    Linda, yeah, that's it exactly! My clothes felt tight, even my bra under my ribs felt too tight, and it seemed like my insides might just explode right out of me. I didn't have pain in my shoulder, though. So sorry you went through it too, sounds like they were similarly clueless in the ER. I hope they gave you the good pain meds quickly.

    That's wonderful that you're doing well and enjoying life while you wait. It's only been a few days since I found out but I'm having trouble just settling in with the information and going about my life. I feel like I shouldn't make any plans in case I end up having surgery soon, but I have no idea if or when I'd have it. I'm also really scared now that I may have to experience that kind of pain again if I have another rupture or bleed. How do you guys deal with all the uncertainty and stay happy?

    Also, if you're in the waiting stage, do you exercise? I wish I'd asked the doctor this but I didn't think of it till later. I usually run, lift light weights and do a lot of crunches 4-5 times a week. Is there any danger in continuing this? I don't feel any pain, except for this light aching sensation on my upper right side, which doesn't seem to get any worse when I work out.

     
    Old 06-20-2008, 07:45 AM   #11
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    Re: Adenomas/ FNH Support ( Take 7)

    Good morning.

    Tina and Katesela welcome! sorry you have to join this group but it is an amazing group of people.

    Tina, I think I am one of the older folks here clocking in at 39. I am overweight as well by technically 40 lbs. Although after surgery I am now only 25 lbs overweight! My daughter's birthday is July 2 as well! Although she will be turning 10. We usually try to have her birthday party in June before school ends but we postponed it. We will have a family celebration at my parents on her actual birthday. She was cool with that but 16 is a bit different! I was scared by surgery as well. Hang in there. I have a 10 inch midline incision (vertical from the sternum to just below my belly button). I had an epidural and that worked great. According to my doctor having the epidural blunts the pain and allows you to heal faster. The hardest part was transitioning from the epidural to oral meds. I was in ICU for about 24 hours. I had low blood pressure and was not breathing the best. I spent 7 days in the hospital. I probably could have been out in 5 except for some issues. I am 3 weeks and 2 days out from surgery and feel pretty darn good. Getting comfortable is hard -- I find myself constantly changing positions. My incision does not hurt it is just always there....if that makes sense. Each hospital is different about family being there for the pre-op stuff. Let the anesthesiologist know that you are nervous and they will give you something. I am sensitive to that kind of stuff .... they gave me a little versid and got the epidural in and then gave me more and I was gone....don't remember a thing until I was in recovery. My husband said I was completely loopy. I don't even remember seeing him!

    Katesela, we have all gone through the is it an adenoma or an FNH! Crazy but the only way to truly know is to get some tissue and send it to the pathlogist. I started opposite of you...my local doctor thought it was an FNH and monitored me. It grew...he sent me to a liver specialist who said this is an adenoma....which was absolutely contrary to what the radiology reports said (and there were numerous reports). He was right it was an adenoma. I don't know how Linda deals with the uncertainty. Once I knew it was three adenomas...I was scheduled for surgery. The good news is they are out and the remaining portion of my liver is clean so I should never again have any problems. Bad news, no hormones....look out menopause!

    Juliet, I would trust that your anesthesiologist knows what he is doing and he is making sure that you will be the most comfortable as possible while being mobile! At some point we just have to trust that these guys know what they are doing. Concentrate on yourself and leave the rest to the well paid, well trained docs! Easier said than done...I second guessed right up until the end!

    Arlyn, I want to go to dinner but I lack the energy and total enthusiasm! I just want to feel 100%. We are only 3 weeks out so we both need to be patient! Grr.... My steri strips are still on! They put some sort of glue that is helping keep them on. The ends are all sticking up but the centers on the incision are still glued down. I am going to take a long hot shower with my belly in the water to see if I can dissolve some glue. If not tomorrow I take a bath and soak! I want these off...not that I notice them but I just want them gone. I want to see what I am going to look like! Yuck!

    I made it to the parade and saw lots of friends. I am wiped out today! I have some friends coming over tonight after work to see me so I will nap today.

    Going to get some rest.

    Best,
    Beth

     
    Old 06-20-2008, 07:58 AM   #12
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    Re: Adenomas/ FNH Support ( Take 7)

    KT8889,

    Thanks for all the information. I woke up at 5am all stressed out about it. Doing better today but still have not heard back about my MRI results. Not holding out for them because my surgeon is 80% sure adenoma and need surgery. I do appreciate all of the questions you answered. I get so nervous and I take anxiety meds at home. So since I can't take them next Thursday morning I was worried about getting nervous. I am a double d cup and worry about the weight on my inscision. We all seem to relate in so many things. This board is awesome and I appreciate all who shares. One of the hard things is explaining to my four year old son that i have to leave for awhile and that when I get home I can't take care of him. We are very close as I stayed home with him after he was born. Then my oldest is bipolar and has such a temper I worry about leaving her. The middle child is quiet and stuffs everything in. My mom and sister promise to take care of them while my husband is with me. I don't want to me alone through this at all. sorry this is a day to freak out some more.
    Thanks for listening. Hope you are feeling well.
    Tina

     
    Old 06-20-2008, 08:04 AM   #13
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    Re: Adenomas/ FNH Support ( Take 7)

    BEthekg7,

    Thanks for the information and support. I am so scared and each day I try to get okay with my surgery. I know getting it out and over with is the best but sometimes I regress from that confidence. The July 2 was also my Aunt's birthday who fought cancer twice and won. Thanks for sharing the overweight part as well. I am going to learn from this experience and get myself healthier once I recover from the surgery. My case I am done having children and I will just need to get tubal ligation once I am able to. At least all of my insurance has approved every aspect of the surgery. Did anyone have to go home with the drain? Were any other meds prescribed besides pain meds? Sorry more questions keep flying. Thanks so much for answering them.
    Tina

     
    Old 06-20-2008, 08:39 AM   #14
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    Re: Adenomas/ FNH Support ( Take 7)

    Wow, so many posts again. I love that we have new people to share with and get them through. Nancy, Welcome to the club! It sounds like you have been dealing with this for much longer then us, glad you are here. Did your surgeon tell you about the chances adenomas turn malignant? I know it is the back of Linda's mind while she is watching her tumors.
    katesela, To answer your question how we deal with all the uncertainty....we vent on here! We have each other, we ask questions and see the good in things. That is the only way. We have all had very bad days on here and that is ok to. We hold each other up when needed. As for working out, I know Nessie, Juliet, Linda and others work out all the time, before surgery and work back into it after.
    Beth, I am right there with you, 38 yrs old! And I was chunky before surgery too, but I lost 25 lbs and I am keeping off and loosing a little more with a better diet. I am about 10-15 lbs away from my goal weight, so that is a good thing! I am so glad you went to your parade. Sounds like you are feeling ok if you are having friends over. Good for you girl!
    Tina, you can not worry about the little things. The weight stuff, no big deal, we all did fine. Your kids will be fine, I promise. Mine are a little older, 15 and 18 and they thought it was cool. (God love them) Bless your heart with your bi-polar daughter. My Mom is bi-polar, so I know what you mean with her. You never know how a person might react with all this stuff. Maybe she will think the hospital is cool and want to become a nurse.
    Cailea, I hope you are enjoying your trip! You sound like you are doing great. Keep taking care of yourself and have fun!
    Juliet, OMG, I will pray so hard that you and Pete will be able to come here! We will have a blast, you better rest up before you come! Beth, feel like taking a road trip to Cincy, or Columbus when Juliet is in? You will be fine with all the drugs. Honestly, I can't remember what they gave me, but I was up and walking the day after surgery hanging on to my IV pole thing. The breathing part I remember was not always easy, just remember it is good for you.
    Patricia, how you doing love? Are you able to keep busy and get anything done right now? Get whatever you can done and then put it on a shelf for a couple weeks.
    Linda, have fun next week. Thanks for filling us all in with the rupture stuff!
    Nessie, did you have one rupture? I can't remember, sorry love. How you doing? Do you start half days next week? That will be great.
    Well, I am sorry if I forgot anything, it has been busy on here.

    Hugs to you all,
    Katie

    Last edited by kt8889; 06-20-2008 at 08:41 AM.

     
    Old 06-20-2008, 09:37 AM   #15
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    Re: Adenomas/ FNH Support ( Take 7)

    Hi everyone I cant stay for long but,

    SPRUCETREE-- I noticed you are from Scottsdale. I live in CA but I grew up in AZ so that is where I had my surgery just 9 days ago. I have an AMAZING surgeon. His name is Dr. Lawrence Koep. He is partnered with two other surgeons named Dr. Brink and Dr. Cashman. He is in Phoenix and he does his surgery at Banner Good Sam. Their website is [url]www.arizonatransplant.com[/url] so you can go check it out. Like I said I LOVE Dr. Koep.

    Ok ladies, more later...off to run some errands with my sister, Kaylin She says hi! She was laughing after posting on here after my surgery about how so many of you are from Australia or England and call your husbands hubby and say mate!

    Anyways be back later
    much love
    ashley

     
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