second opinion

[riverratttt47w]

was told i had cirrhosis back in 2005 from having hep.c and said i had to have had it for at least 25-30 years to do the damage that has been done. was doing bad back then but got rid of the hep c and starting gaining my weight back as well and been doing great all in all. recently within the past 4 months i have been sick again, went from 200lbs down to 173lbs now and have no energy level and sweat really bad when out even if i do nothin and shortness of breath on excertion. i seem to still be going downhill and have been to docs and have had test and all but my grastro doc tell me i am aneamic and some levels are a little off but she says in her opinion my cirohisis can cause all my problems but doesnt believe it is and sends me on my way. so i went to see my diabetic doc and she sees how sick i look and the weight loos and not happy about it and is going to do a few test of her own and thinks i need to see a freind of hers that is a liver speciallist. just wondering if my grastro doc is wrong and dont want to admitt it or what. havent been this sick since 2005 and not doing well. i have the itching and blisters like misquitoe bites that are all in my head and arms mostly but have some on upper body and legs. looking for answers before i wither away....
thank you, walter

[nan535]

I have sent you a personal message with a much more detailed response.

You may use this website to find transplant centers around the country that do transplants at a much lower MELD score.

http://www.srtr.org/csr/current/Centers/Default.aspx

Best wishes to you and your mother.

Nan

[ceanothus]

I'm so sorry to hear about your mother! In general, you will get more responses, from more individuals, if you use the orange "post a question" button to ask something new, instead of asking it as a reply to an older question someone else asked.

I'm not up on all the info about transplants, but I do know that the list lengths vary significantly with geographic area, so while one area may require a MELD score of 31, another might only require a score of 16. I'm making up the actual numbers here, as I don't know exactly what is required at different places, but they are numbers similar to these. Years ago I had heard that Jacksonville, Florida had one of the shortest wait lists, and fairly recently it seems that Seattle had a shorter list than most areas, so if you can find a geographic area that has less demand for new livers than exists where your mother lives, it may be possible to temporarily relocate. Another important strategy is to be sure she is getting the very best care, by excellent hepatologists - not just gastroenterologists - at a major transplant center, as they can help keep her going longer (and feeling better) by treating the many side issues as efficiently as is possible. Do try posting this again as a new question though, as I'd really like you to get more replies and more knowledgeable answers than what I can offer. Best wishes!

[Paulamgardner]

I'm not sure if anyone will get this message. my mom was diagnosed last month with stage four cirrhosis. basically they told her she would need a liver transplant to survive.  shocking for us all! she went to the emergency room feeling sluggish, feet were swollen, tired and body aches and the results  were bad. they admitted her and she was win the hospital for 5 days. in those five days they did test after test. the latest test  before leaving said her meld was at 19 and in order for you to get on a transplant list you have to be at 31.  we found out she has auto immune hepatitis. which I guess it's when your body attacks itself. she is over weight she never drinks or has done drugs.  we completely change her diet and she has lost a total of 40 pounds which the doctor says 15 of it is from water weight. her meld is currently at 15. any suggestions on getting her in the transplant list sooner?

[nan535]

Have you researched the Medicare Advantage Plans in your area?
My husband has had incredible care (including a transplant) with his plan.
It is doable.  
I know we all wish you the best.

Nan

[riverratttt47w]

thanks and not giving up but with being disabled and on medicare i dont have many options but i see a live doc on the 23rd and will see how things go. thank you all for your input.

[ceanothus]

I just wanted to encourage you to think again about the Cleveland Clinic, at least to really examine your options. Many of the top clinics have outreach programs with satellite offices in other communities and doctors who travel to those satellite offices a couple days a week or a month, so perhaps something like that may be offered. I've had many major medical problems over my 58 years and one thing I've learned is that your health is invaluable and it is usually worth going to quite a lot of extra trouble and/or expense to seek out really excellent care providers. You may be able to find an excellent one closer to home, but whatever you do, don't settle for any mediocre doctors. All of us are special, and you do deserve excellent care.

[riverratttt47w]

little far for me and my finances want allow me to travel that far. just starting to take it for what it is and live my best.....hugs

[orphanedhawk]

Is Cleveland clinic a possibility for you ? It sounds like the best option and that you should try to get in to see them as soon as possible.

[riverratttt47w]

always telling me levels are fine but something sure aint for me to be in the shape i am in. havent been put on any new meds except all the ones i take now and ready to stop all. really tired of everything the past 4 months and just out of my luster for life as i was anymore. dont see a liver doc till about 6 more weeks and not sure i will make it. ready to let god take control as i did back in 2005 and things turned out fine. was on ensure back then and trying it again to see how it goes. thank you all and best wishes to you all.
walter

[nan535]

"...have the itching and blisters like misquitoe bites that are all in my head and arms mostly but have some on upper body and legs."

Have any of your doctors started you on any new medications recently?
This sounds like a possible allergic reaction. When have you last had bloodwork done?  Are your liver enzyme and creatanine levels elevated?
These are very important levels to stay on top of.

As has been said:  Run, don't walk, to a liver specialist.

I wish you the best. Please  let us know how you're doing.
Nan

[HectorSF]

Cleveland Clinic has one of the best liver centers in the whole country. And the most experienced and knowledgeable doctors any where.  Highly recommended. Check out there web site.

http://my.clevelandclinic.org/digestive_diseases/departments-centers/gastroenterology-hepatology/department-of-gastroenterology-hepatology.aspx

David Barnes, M.D.
[phone]
Location(s): Cleveland Clinic Main Campus
Department: Gastroenterology and Hepatology
Specialties: Specialty Interests
biliary disorders, biliary tract disease, Diagnostic and therapeutic EGD (upper endoscopy) and colonoscopy, diagnostic/therapeutic endoscopy, drug induced liver disease, Education of Fellows/Residents, end stage liver disease, Eval and management of Hepatobiliary Malignancies, gastrointestinal endoscopy, general hepatology, hepatitis B, hepatitis C and liver disease, hepatology, liver, liver and biliary tract disease, Liver Disease, Liver Transplantation, liver-biliary tract disease, non alcoholic fatty liver disease, Therapeutic endoscopy including difficult colonoscopy and polypectomy
Treats: Adults Only
Surgeon: No
Education: University of North Carolina at Chapel Hill School of Medicine


Contact the Gastroenterology department:
Ph. 216.444.6536 or toll-free 800.223.2273 (ext. 4-6536).

Before Your Appointment:

Depending upon the reason for your doctor’s visit, this checklist can help you prepare.

* Gather documents to bring to your doctor’s visit:
* Copies of any tests, x-rays, or medical histories relating to your medical problem.
* Completed medical history questionnaire.
* A list of all current medications taken on a regular basis, including over-the-counter and herbal medications.
* Review any special directions from your doctor about diet or medication restrictions prior to your appointment.
* Ask friends or relatives to accompany you if you wish. Depending on the type of appointment you have, you may need someone to take you home.
* Bring a sweater or coat. Our buildings are kept cool to protect and ensure the proper function of medical equipment.

Good luck to you!
Hector

[orphanedhawk]

I know a woman who had a transplant in Ohio.
She was very happy with her doctor.
Dr. David Barnes.
clevelandclinic.org

[riverratttt47w]

i live in cincinnati, ohio and would be gratefull for any liver doc info i can get for my area. my Endocrinologist is suppose to call me later hopefully to give me some info but want all i can get. feel i need to get this going with the liver doc before its too late and told her i dont have 2 months to wait to get into see a liver doc, i need the doc now so i am praying for some progress.
thank you again, walter

[riverratttt47w]

thank you all,  my a1c was 5.5 last week but says it may be low from not eating and havent had another liver bioposy since 2006 and was told then my liver was to far gone to heal itself and have been just going on since doning pretty good till the past few months. not sure what my levels are but grastro doc says they look ok and dont see that my liver is causing this but no one can seem to find out anything else wrong with me that will cause my problems so i think she is wrong. my Endocrinologist was talking about having another biopsy done and gonna call and talk to my doctors about it, she seems the only one that see i am withering away and concerned. others just say you are fine and see you in 4-6 months....may not make that appointment if someone dont do something. i am fixing to leave for the Endocrinologist so she can do some blood work and suppose to let me know about the liver doc i am hoping, dont wanna keep waiting until its too late if not already. have a almost constant tightness and dull pain in chest as well for long time but no one seems to listen to me or believe me....not sure which one but all they have to do is look at me a see. i finally had to go buy a couple pair of size 31 pants so i could go out without my pants falling off. donty wanna go any lower, starting to get really down about this and no one but my Endocrinologist believes that their is something going on.
thank you for the info and i will keep in touch....hugz and blessings to all and thank you again

[HectorSF]

Walter,

I am sorry you are having such problems. Hopefully I can provide some useful information that will provide some actionable items.

You were diagnosed with cirrhosis in 2005. Liver disease is a progress disease so once someone has cirrhosis (advanced liver disease) they should always be under the care of a hepatologist at a transplant center. Although you cure your hepatitis C you had extensive liver disease. Your liver should have been monitored every so many years to make sure your liver was healing itself and if you had any other issues that may be caused by your liver disease.

To lose 25 lbs is serious. “No energy level”, “shortness of breath” is signs of anemia. The question is what is the cause of your anemia? Many conditions and diseases can cause anemia including liver disease.

“. i have the itching and blisters like mosquito bites that are all in my head and arms mostly but have some on upper body and legs”
Itching is not uncommon with liver disease. It is called “pruritus”. Blisters or bumps I have never heard of.

If you have your latest blood tests results you should post them so we can see the extent of your liver disease.

Not knowing your gastro I can say what they know or don’t know but it wouldn’t hurt to get a second opinion. It is time to start getting serious about your liver disease if you still have it.

I will be blunt here as I don't want what has happened to me happen to you. The more time goes on the less options will be available to you if you have advanced liver disease. You should find out once and for all if you have put your liver disease behind you, or if it is damaging your health. Make no mistake about it, liver disease untreated or improperly treated by the wrong type of doctor can be fatal. If your Endocrinologistdoctor who treats your diabetes knows a hepatologist (liver specialist) that works at a transplant center then great, go see them. Either way you should see a hepatologist at a transplant center ASAP. Depending on how advanced your liver disease was when you cured your hepatitis C your liver disease can still progress without having the hepatitis C infection.

Let us know when you find a hepatologist and what you find out. If you still have liver disease we can help you deal with it.
Hang in there.

My background: I have had cirrhosis caused by hep C since at least 2007. In 2009 I first developed ascites and hepatic encephalopathy. In 2011 I was diagnosed with HCC (liver cancer). I am currently waiting for a liver transplant which I hope to get in the next 5-6 months.

Hector

[orphanedhawk]

Ceanothus is absolutely right, you need to see a good hepatologist ( a liver specialist) as soon as possible.

Here is a list of doctors that our members recommended from the hep C forum:
http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783

If you can't find one, tell us where you live, and we'll see if we can help.

[Dee1956]

Hello, I am sure Hector will be a long  very soon
One of the first things to do to find a good hepatologist is to go to a hospiatal that does transplants, they will have the best doctors who can help you.
The gastro you saw was not helpful as all.  Have you had a biopsy since 2005?..do you know what it said?
I am so sorry you are going through this, not knowing what is wrong is very scary, are you watching your sugar level?  Have you had an A1C lately?
I know others will come along with more questions, these are just off the top of my head
I will try to find some more information
Good luck to you
Dee

[Dee1956]

Hello, I am sure Hector will be a long  very soon
One of the first things to do to find a good hepatologist is to go to a hospiatal that does transplants, they will have the best doctors who can help you.
The gastro you saw was not helpful as all.  Have you had a biopsy since 2005?..do you know what it said?
I am so sorry you are going through this, not knowing what is wrong is very scary, are you watching your sugar level?  Have you had an A1C lately?
I know others will come along with more questions, these are just off the top of my head
I will try to find some more information
Good luck to you
Dee

[ceanothus]

Hi Walter, I'm not the particularly expert at being able to figure out which symptoms are being caused by cirrhosis, so I will hope Hector or one of the other top experts will come respond to that part of your question. What I can tell you for sure is that if you have cirrhosis, then a gastro is NOT the right doctor to treat you, they don't have adequate training. You should ask for a referral to a good hepatologist. They will be far more knowledgeable about the disease and it's complications. If at all possible, I would recommend that you try to get hooked up with a hepatologist who is working out of a large teaching hospital with a good liver transplant program. If your liver fails you will need a transplant to survive. If you specify your geographic region someone here may be able to suggest a really good hepatologist in your area. Good luck!