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03/17/2012 04:26 PM

So scared!(page 3)

ruth8890
ruth8890  
Posts: 1181
Senior Member

Dennis - Great post to grandmere! I just learned that my Liver Doc is NOT a hepatologist!

First someone tells me he is then finally I get the truth. Does a Cirrhosis patient "need" a hepatologist? From listening to you and others it sounds like a good idea, but this Liver Doc, being a GI Specialist, hasn't recommended I get one and apparently does this Cirrhosis and referral to transplant eval and treatment all the time. Uggghhh Dizzy Ru

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03/17/2012 07:00 PM
sammy566
sammy566  
Posts: 339
Member

ruth

A hepatologist is a physician who specializes in liver diseases, if you have Cirrhosis you should definetly be seen by one.

I have a GI doctor, but for any and all questions I always go to my hepatologist.

You might have a great GI doctor, but unless he is also a hepatologist, he does not specialize in liver diseases.

Do a google search for your doctors name, it should tell you what studies he has done, and what kind of things he specialize in.

Good luck

Sammy.


03/17/2012 08:26 PM
prayer
prayer  
Posts: 526
Member

Ru, my husbands Dr. does both, Gastroenterology and Hepatology

and is a specialist in Alpah 1. , maybe that is why he had to spend 4 days getting different test done


03/17/2012 08:34 PM
prayer
prayer  
Posts: 526
Member

I just researched and found this informationSmile makes me feel even betterSmile

Excellence Award recognized 4 recipients out of 95 hospitals evaluated:

 California Pacific Medical Center - Pacific

 UCSF Medical Center

 Cleveland Clinic

 Saint Lukes Episcopal Hospitaland Cleveland is in the top 4....


03/17/2012 08:57 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Sammy and Prayer - thank you!!! I will see if the Liver Transplant Eval wants me to use their Hep or find one here in Delaware.

Now I understand why my GI Doc doesn't answer questions fully. It's been a real problem and I have to stop him to get the full answer or he just lets it roll off his tongue incomplete - like an incomplete recipe. For example Lactulose..3 answers about why I'm on it from his office:

1) Him = for memory and Gait

2) His Nurse=to maake sure you have 2-3 BM's a day

3) His assistant = for clarity.

Not ONE of them connected it with my HE or with ridding ammonia!! I didn't like that at all esp with a medical and pharmacy tech background!

Congrats prayer on finding out about your Hep Doc's Excellence Awards! I went to Vitals.com by accident the other day and found my Doctor brother (we're not very close) there and then my PCP (I was the fist to write a review about her). It lists their background and board certifications and awards, etc. Is that the site you used?

Ru


03/20/2012 04:49 AM
grandmere
 
Posts: 22
New Member

Thank you Dennis and everyone. Dennis, I couldn't agree with you more.My doctor is very nice but I do wish she knew enough to know she doesn't know enough about everything..her lack of knowledge about the liver surprised me, quite frankly, I was shocked by some of her responses to my concerns.She was so quick to dismiss them..I know my body and I am trying to listen when it is teling me something is not right. I have to take most of the responsibility though!I was an oncology nurse for years, and a very strong advocate for my patients, faced many a doctor head on with no problem but when it came to myself trying to address my concerns and fears with my own doctor I was like a scared, very vulnerable school kid..afraid to speak up or I didn't have the confidence to do so. Whatever the reason, I have to work on that..if I don't take control, who will? No one! I have to remember these people are not "Gods", they work for me and us. I am learning so much here and I know I will become more assertive and in control with the more knowledge I gain. Don't know if I am making much sense, just wanted to share my thoughts. I hope everyone here has as good a day as they possibly can.I admire the strength, courage and knowledge you all have but mostly I am overwhelmed by the kindness and concern everyone has for the other. Thank You!

04/03/2014 03:23 PM
scotlady4
 
Posts: 2
New Member

Don't panic! I was diagnosed in 1996 when I had my gall bladder removed. I woke up to the cirrhosis news and life changed. I was told I would need a transplant and was so afraid and life changed a lot but it is still a worthwhile life. Get all the tests. No matter how scary it is best to get all the news in front of you and know exactly where you stand. Try your best not to drink. It is hard sometimes and we all fail but it is crucial to survival. Personally I get irked with the never again so I say I allow myself a drink at xmas or one or two special times of the year. Before you know it it doesn't even sound good anymore and you will notice three or four years have went by without a drink. Anyway my point is sometimes even when the tests are bad we still have lots of time. My kids were young and I was afraid of leaving them in the 90's. Now they are grown and in the Navy and families of their own and my survival is not so critical though I fight for more time now that I have grandchildren. For me it was really learning to accept the limitations and being better to your body. Rest, less stress, better foods. Blueberries are great for the liver and blueberry and banana shakes help keep the weight on. I also struggle with the weight thing as at my late stage food is downright nauseating to me. I drink a lot of pomegranate and blueberry and different shakes like that to try to stay over 100 pds. Now you can even buy the mixes frozen so you don't waste as much fresh fruit. Also I drink the X2 instant breakfasts for the vitamins and weight. Nothing fits but I am old enough now not to mind and mainly live in pj's. One of the hardest parts to me was learning to expect less of yourself and excuse yourself for not being 100%. At first I went crazy if my housework etc was not up to my standard or I could not keep commitments or go to this club or meeting or that. Dust drove me around the bin but eventually I realized no one else notices it half as much as I do and people are understanding that you are sick so if dishes wait they wait now. Take a deep breath. You have a lot to go through getting tests and waiting for results and learning how you can be your own best advocate. As much as possible deal with it one step at a time as it happens. At first you worry with each test but it does no good and just stresses and hurts you. Now I have them and forget them as much as I can. One thing I have learned if it is bad you will get a phone call quick for another test, specialist or something. Personally no news is good news when it comes to tests from my experience. Relax and try to enjoy each day to it's fullest. I wish you well.
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