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Hepatitis C - Advanced stages
Yesterday I went back to my primary M.D. and asked what is next. I am jaundiced, edema (up to my neck), hair falling out, itchy skin. I'm told that my liver is "shot." My primary prescribed Lasix 20 mg. twice a day, and to add protein powder to my diet because my albumin count is so low. I am taking Milk Thistle 1000 mg. three times daily and levothyroxin 50 mcg daily. The doctor is talking transplant. Don't know if I would be a candidate. I am 61 and my health is not great. We do not have a hemotoligist where I live. The closest would be over 100 miles away. Now what?
Thank you for the info. I am currently dealing with MTM (Medical Transport Management) and usually they are very good. Because the trip is over 100 miles, they must get prior authorization before they okay the trip. It falls back on my "new" primary MD's lap. The form sat on his desk for a long time (2-3 wks) and he finally faxed it back, without any of the info that the transport company had requested, so the rejected the ride. Recalled the doctors office, spoke with the nurse, and after she consulted with the MD, perhaps they could refax the form. I'm not pushing the panic button yet. As far as flying goes, I might be a little skittish. It is good info to know, though. Thank you for sharing.
As far as your transportation issues have you heard of an organization called Angel flight Central?
Here is a link to their organization
http://angelflightcentral.org/passengers.php
They arrange free air transportation to and from medical appointments and other reasons for patients and family traveling via small air plane flown by volunteer pilots. Plus they also can arrange ground tranportation from airport to hotel sometimes. The pilots have to meet minimum hours and cross country time requirements in order to fly for the group.
I am a volunteer pilot for Angel Flight West and I know it to be a great organization.
If you think something like this would be of interest, you should contact them for more information.
Best of luck to you
Lynn
Here is a link to their organization
http://angelflightcentral.org/passengers.php
They arrange free air transportation to and from medical appointments and other reasons for patients and family traveling via small air plane flown by volunteer pilots. Plus they also can arrange ground tranportation from airport to hotel sometimes. The pilots have to meet minimum hours and cross country time requirements in order to fly for the group.
I am a volunteer pilot for Angel Flight West and I know it to be a great organization.
If you think something like this would be of interest, you should contact them for more information.
Best of luck to you
Lynn
Hello. I haven't been in the forum as I really didn't want to talk about my disease. My appointment with the Hepatologist is for July 8. I'm still working on transportation arrangements. Me? Good days, bad days. My symptoms have not improved so they are dealt with as they come up. I feel isolated as my children (grown up now) live in a neighboring state, so I don't get to see them as much as I would like. Right now, I feel like I'm in limbo, waiting for the other shoe to fall.
Thank you for your reply. Good news yesterday. Madison did call yesterday, and I have an appointment scheduled for July 8th. Meantime, I take one day at a time, good days, bad days. After seeing multiple doctors, 2 ER visits, and no treatment offered, maybe now I can move forward, and get treatment.
"After 1 week I get a call back that my records have been sent to
Madison, and I am to wait until I hear from them."
I wouldn't wait for a call. I would call the director
of the transplant program in Madison to ensure your records
have been received and request an appt. ASAP
Good luck
Nan
Madison, and I am to wait until I hear from them."
I wouldn't wait for a call. I would call the director
of the transplant program in Madison to ensure your records
have been received and request an appt. ASAP
Good luck
Nan
I called my primary M.D., and asked for a referral to a hepatologist. After 1 week I get a call back that my records have been sent to Madison, and I am to wait until I hear from them. This whole thing just *****, because no doctor seems to want to take my case. It feels like I am to go off quietly and not bother anyone. So, I wait until I hear from Madison. And for the record, neither place in Milwaukee would take me.
Thank you so much.I do realize how serious this is and I must move to the next step. I will continue to post updates as I know them. Honestly, I'm scared.
Thank you for your comments. That is my next step, and I have to set the ball in motion. More to follow.
As the previous posters stated, you need to be evaluated at a transplant center. Your illness is life threatening at this point. Its time to start thinking outside of the box if you want to live. Sorry to be so blunt. You need a transplant liver specialist who will treat your current symptoms while you are evaluated for transplant. My husband was probably in the worst possible condition at age 66 (he had end stage liver disease) and was able to get a transplant. But he had to go to another state that transplanted patients with a lower MELD score. That decision saved his life.
Do you have family members or close friends who can help you with your next steps? I wish you the best as you move forward with a treatment plan.
Nan
Do you have family members or close friends who can help you with your next steps? I wish you the best as you move forward with a treatment plan.
Nan
I agree with everyone's comments above. Your primary care doctor doesn't have the skills or the experience in taking care of a person with Cirrhosis. You need a hepatologist. It's very important that you get referred to one as soon as possible, as it can make the difference between life and death for you. You will need to be monitored and treated as needed for edema, ascites, and any other life threatening complications that you may develop such as esophageal varices or hepatic encephalopathy. A good hepatologist in a transplant center will monitor you closely for liver cancer, treat your symptoms, and evaluate you for a possible transplant. Your age shouldn't be an inhibiting factor. Your overall health could be, depending upon your conditions, but either way you absolutely need a hepatologist and you need to be assessed for a transplant.
Please do not delay.
You may also want to post in medhelp's Cirrhosis of the Liver forum, where you will find others who have Cirrhosis.
Advocate1955
Please do not delay.
You may also want to post in medhelp's Cirrhosis of the Liver forum, where you will find others who have Cirrhosis.
Advocate1955
Hello, Hector and Jimmy have given you great advice.
I hope you can find a doctor who specializes in the liver, a hepatologist is what you need.
Take care
Dee
I hope you can find a doctor who specializes in the liver, a hepatologist is what you need.
Take care
Dee
Please get a referal to see a hepatologist, a liver disease specialist (not a hematologist-blood diseases) at a liver transplant center who is educated in liver disease. No educated doctor who has any people skills tells the patient their liver is "shot". Secondly no doctor would tell a patient to take protein powder to correct low albumen levels caused by cirrhosis or post- paracentesis. Albumin when needed is given by infusion.
I am afraid your primary is out of his league. 20 mg of lasix will do nothing for ascites. First-line treatment for patients with cirrhosis and ascites consists of sodium restriction (2000 mg/day and diuretics (oral spironolactone with or without oral furosemide). The usual diuretic regimen for ascites consists of single morning doses of oral spironolactone and furosemide, beginning with 100 mg of the former and 40 mg of the latter.
Hair failing out is not a symptom of liver disease unless you mean you are losing body hair and not the hair on your head.
What do you mean edema up to your neck? Edema typical manifests itself in patients with advanced liver disease as ascites (abdominal fluid) or fluid in the lower extremities, legs and feet.
Get a referral from your primary to a transplant center and let them assess your liver disease and help you to properly manage your liver disease and its complication.
As far as how far away a transplant center is...End-Stage Liver Disease is a life-threatening illness. Without proper treatment, and if needed a liver transplant, it is fatal.
By the way many of us get transplants in our sixties so that is not an issue. Let the transplant center decide if you are a candidate for transplant. Only they can properly assess your illness and list you for transplantation.
Get the proper medical you need for yourself and your loved ones.
Good luck!
Hector
I am afraid your primary is out of his league. 20 mg of lasix will do nothing for ascites. First-line treatment for patients with cirrhosis and ascites consists of sodium restriction (2000 mg/day and diuretics (oral spironolactone with or without oral furosemide). The usual diuretic regimen for ascites consists of single morning doses of oral spironolactone and furosemide, beginning with 100 mg of the former and 40 mg of the latter.
Hair failing out is not a symptom of liver disease unless you mean you are losing body hair and not the hair on your head.
What do you mean edema up to your neck? Edema typical manifests itself in patients with advanced liver disease as ascites (abdominal fluid) or fluid in the lower extremities, legs and feet.
Get a referral from your primary to a transplant center and let them assess your liver disease and help you to properly manage your liver disease and its complication.
As far as how far away a transplant center is...End-Stage Liver Disease is a life-threatening illness. Without proper treatment, and if needed a liver transplant, it is fatal.
By the way many of us get transplants in our sixties so that is not an issue. Let the transplant center decide if you are a candidate for transplant. Only they can properly assess your illness and list you for transplantation.
Get the proper medical you need for yourself and your loved ones.
Good luck!
Hector
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University of Wisconsin Hospital and Clinics, Madison, WI
Aurora St. Luke's Medical Center, Milwaukee, WI
Froedtert Memorial Lutheran Hospital, Milwaukee, WI
If that is not possible, then you should inquire about the gastroenterologists in Green bay. See if any of them have knowledge and experience in hepatology (not a hepatologist because there are none in green bay), cirrhosis including decompensated, and liver disease. Preferability one that has a relationship with one of the liver transplant centers listed above. Especially if the hepatologist at the transplant center can do tele-hepatology, telephone medicine and palliative care in patients with advanced liver disease with you and your local gastroenterologist.
http://hepatitiscnewdrugs.blogspot.com/2010/12/what-is-hepatologist-what-is.html
I wish you the best.