Aa
HELP
I SEEM TO BE GOING THROUGH ALOT OF THE SAME , HERE I BEEN DIAGNOSED WITH HEPC , AND I HAVE VARICIES IN MY ESOPHAGUS , WHICH SHOW SIGNS OF CIRROSIS , DUE TO ME , BEING OVER WEIGHT , AS I AM 4'10 AND 197LBS THEIRS NOTHING THAT THEY WILL DO FOR ME , IM IN MY LAST STAGES OF HEPC IV BEEN DIAGNOSED NOW FOR OVER 5 YEARS BUT HAVE HAD IT WAY BEFORE , LIKE 2005 OR BEFORE , I ALSO HAVE PKU , WHICH REQUIRES A CERTAIN DIET OF EATING , I DONT SEEM TO EAT MUCH BUT I WAS HOSPITALIZED FOR PANCRETITUS LIKE 1 1/2 YEARS AGO ALONG WITH DEHYDRATION , I HAVE A NUTRITIONIST AT USE BUT SHE TELLS ME JUST TO EAT THE VEGTABLES/ AND DRINK WATER, EVER THE FRUIT IS BAD FOR ME , . I GET SOO BAD WITH ABDONINAL PAIN I CANT GET UP OR DOWN AT TIMES , I KNOW I DOT GOT GET THIS WEIGHT OFF I WAS WONDERING IF THEIR IS ANY THING I CAN TURN TO FOR HELP ? I ALSO HAVE GAASTRIC-REFLUX THATS PRETTY BAD AT TIMES ... I LIVE IN ANDERSON,CA NEAR REDDING , IV BEEN CONSIDERING MOVING BACK TO LA ... CAUSE IM HAVE TRANSPOSTATION PROBLEMS HERE .... IV CALLED CEDARS SIANI FOR LIVER TRANSPLANT , IV GOT TO SEND MY RECORDS BUT THESE DRS ARE TELLING ME THE SAME THING OVER AND OVER, THEY WONT GIVE ME TREATMENT TILL I LOOSE 50 PLUS POUNDS
I agree with what you've already been told here but have two things to add. First, a GI is okay for initial testing stuff, but you shouldn't rely on them for treatment, not even for saying whether you can treat. A good hepatologist at a liver transplant clinic will have a much clearer picture of your situation and how it will be affected by treatment. Hepatologists will also occasionally treat people who are sicker than are usually treated, if they can monitor the treatment very closely and carefully. You should try to get in to see one of these hepatologist for a thorough evaluation first and then decide if you have to move closer or not. Depending on their evaluation, you might be able to be seen at a distance, but its a good idea to let them know you are quite willing to move closer if necessary.
The other point I wanted to make is that many people lose weight during treatment for HCV, without trying. The drugs take away one's appetite at best and cause severe nausea at worst. I lost 25 pounds without trying, and believe me, my body generally gains weight just thinking about food. It could be that treating will also cause you to lose enough to be in an acceptable weight range for a transplant, although you'd have to work hard to keep it off after treatment ended. I've regained 15 of my 25 pounds in the 9 months since I finished tx. I'm now starting to work at stopping that, but I'm a little late. Good luck at all of this. And please try to remember not to use all caps when typing!
The other point I wanted to make is that many people lose weight during treatment for HCV, without trying. The drugs take away one's appetite at best and cause severe nausea at worst. I lost 25 pounds without trying, and believe me, my body generally gains weight just thinking about food. It could be that treating will also cause you to lose enough to be in an acceptable weight range for a transplant, although you'd have to work hard to keep it off after treatment ended. I've regained 15 of my 25 pounds in the 9 months since I finished tx. I'm now starting to work at stopping that, but I'm a little late. Good luck at all of this. And please try to remember not to use all caps when typing!
THANK YOU SO MUCH FOR THE INFORMATION, SINCE IV BEEN COMUNICATING ON HER IV BEEN DOING SOME RESEARCH , ON CENTERS / ALSO MY MOVE EVEN THOUGH I REALLY DONT WANT TO GO , BUT I KNOW IT HAS TO GET DONE ,,, RIGHT NOW IM WAITING FOR A ANOTHER ENDOSCOPY WHICH CAN TELL ME MORE , LAST ONE WAS IN 2010 , SO ILL KNOW MORE AFTER JULY 10TH ... AGAIN THANK U AND ILL KEEP ON THIS .... ALSO THE MOVE WILL BE DIFFICULT , FINANCIALLY SO ASAP ......
I'm not really sure I understand exactly what your situation is, but you absolutely need to be seen and monitored by a hepatologist in a liver transplant center. If that means moving to be closer to a liver transplant center, then do it. People can treat their Hep C regardless of their weight, although being overweight can add extra stress and work for your liver. People who exceed a specific BMI cannot get a liver transplant because the risks are too high. People whose cirrhosis is too far advanced may not be able to treat their Hep C because the medications may cause their liver to fail. These are things that a transplant hepatologist can evaluate and answer for you. 1) Make an appointment w hepatologist in a transplant center, 2) ask if you can still treat your Hep C or if your cirrhosis is too advanced to treat your Hep C, 3) if you can treat your Hep C, do it now, 4) if you can't treat your Hep C, ask the hepatologist to develop a cars plan to manage the symptoms of your cirrhosis and help you get a nutritionist in the liver transplant center to help you lose weight in a way that doesn't hurt your liver so that you will qualify for a transplant when you need it.
Advocate1955
Advocate1955
iv been to 2 gi drs and up here iv been to hepc clinic and she told me the same even if she waas trying to send me to a hematologist up here same issues would be the weight either way which the nearest she was trying to send me to was in chico , but didnt think it would change the out come. so ur sayin if i get near a hepatologist /w transplant center it would be a possibility to get some kind of transpostation for treatment/
would this be a possibility /w medical coverage ?
would this be a possibility /w medical coverage ?
Oh, in re-reading your post, I think perhaps treatment for Hep C is not an option for you because of the severity of your Cirrhosis or perhaps because of your other health issues. I don't think it's your weight that's preventing Hep C treatment. You need a special diet to help your liver and your other health problems and you also need to lose weight to qualify for a transplant or you will get sicker and sicker when your liver stops working. You really need a hepatologist in a transplant center NOW so that you can manage your symptoms and receive proper care so that you can be listed for a transplant when your liver starts to fail.
Advocate1955
Advocate1955
Why is treatment for Hep C not an option because of your weight issues? I am not aware of any weight restrictions regarding Hep C treatment. Getting rid of the virus would significantly reduce the burden on your liver and hopefully help your liver last longer while you lose weight and get healthy enough to hopefully survive a transplant when you qualify for one. You need to move closer to a transplant center if you cannot arrange transportation to one. A hepatologist is the only type of doctor who can care for you.
Advocate1955
Advocate1955
I am understanding what i gotta do but as far as transportation from where i am is near impossible , also treatment for the hep c , is not an option due to my weight issues , just dont know where to go from here , with all these obstacles in the way , is their an option of out patient/in patient care ?
As noted above, it's very important for you to be monitored regularly by a hepatologist in a transplant center. Only a hepatologist in a transplant center can help you monitor your symptoms and treat symptoms as they occur. As time goes on (no one knows how long, could be months, could be years), your liver will function less and less, and you will become sicker. Right now you have varices, which could cause a life threatening bleed at any time. As time goes on, you may develop ascites (fluid build up) and/or hepatic encephalopathy (brain/cognitive problems due to build up of ammonia). You will need a strong support system at home to make sure that you are taking all of the right medications at the right time, that you are behaving safely, and that you are eating properly. No red meat, no iron rich foods, no supplements without approval from a hepatologist, if you take vitamins take those that do not have iron, drink water, reduce sodium, and increase fresh fruits and vegetables. But you really need a nutritionist in a transplant hepatology clinic to guide you in how to eat to protect your liver while at the same time lose the 50 or so pounds that you need to lose in order to be listed for a transplant sometime in the future when the need arises. It is time to begin putting all of those components together: make an appointment with a hepatologist in a transplant center, get on a proper treatment plan, create your support system at home for medication/food/diet/transportation/care, and make sure you have medical insurance in place.
Advocate1955
Advocate1955
COMMUNITY LEADER
Hepatitis C usually takes decades to seriously damage the liver and develop cirrhosis of the liver. Since you have cirrhosis and varices you have complete cirrhosis of the liver. The next stage will happen when you liver can no longer function normally and the architect of the liver changes permanently. Called decompensated cirrhosis. This is when you will most likely develop ascites, have bleeding varices and many other complications. You will need a liver transplant to save your life then. Also since you have cirrhosis you should be monitored every 6 months for the development of liver cancer (HCC). Like many cancers if caught early it can usually be managed if caught too late it is a aggressive and very deadly cancer.
You need to be cared for at a liver transplant center/liver disease center to have your liver disease managed. Plus you will need to have all your other medical conditions managed as well. Transplants organs are rationed. There are not enough for everyone who needs one so on average 19 people every day die waiting for a transplant organ. There is no question you will have to lose the weight because the surgery can be too dangerous to perform and all transplant patients must work at being compliant with the transplant centers rules. A transplant center can remove anyone that violated the rules for being as healthly as possible before transplant. That is in California getting a liver transplant is difficult and you may have to wait years until you are ill enough to get a transplant. So you have plenty of time to get your weight under control.
"Overweight or obese prior to the transplant slows improvement in the patient's physical health-related quality of life compared with patients of normal weight. This is consistent with findings of less robust among overweight or obese patients with chronic illness.
The rate of postoperative complications was significantly higher in the overweight (60.7%, P < 0.01) and obese recipients (65.5%, P < 0.01) versus the normal-weight recipients (50.4%). The morbidly obese patients had a longer mean intensive care unit (ICU) stay than the normal-weight patients (4.7 versus 3.2 days, P = 0.03). The mean hospital stay was longer for the overweight (22.4 days, P < 0.001), obese (21.3 days, P = 0.04), and morbidly obese recipients (22.4 days, P = 0.047) versus the normal-weight recipients (18.0 days). There was no difference in death-censored graft survival or patient survival between the groups. Overweight and obese patients have significantly increased morbidity in terms of complications after liver transplantation and, consequently, longer ICU and hospital stays."
Out course you can always come to Northern California for a transplant too but the same rules generally will apply. UCSF, California Pacific Medical Center and Stanford.
Please don't type in all capital letters that means you are shouting and it makes it difficult to read.
Best of luck to you!
Hector
You need to be cared for at a liver transplant center/liver disease center to have your liver disease managed. Plus you will need to have all your other medical conditions managed as well. Transplants organs are rationed. There are not enough for everyone who needs one so on average 19 people every day die waiting for a transplant organ. There is no question you will have to lose the weight because the surgery can be too dangerous to perform and all transplant patients must work at being compliant with the transplant centers rules. A transplant center can remove anyone that violated the rules for being as healthly as possible before transplant. That is in California getting a liver transplant is difficult and you may have to wait years until you are ill enough to get a transplant. So you have plenty of time to get your weight under control.
"Overweight or obese prior to the transplant slows improvement in the patient's physical health-related quality of life compared with patients of normal weight. This is consistent with findings of less robust among overweight or obese patients with chronic illness.
The rate of postoperative complications was significantly higher in the overweight (60.7%, P < 0.01) and obese recipients (65.5%, P < 0.01) versus the normal-weight recipients (50.4%). The morbidly obese patients had a longer mean intensive care unit (ICU) stay than the normal-weight patients (4.7 versus 3.2 days, P = 0.03). The mean hospital stay was longer for the overweight (22.4 days, P < 0.001), obese (21.3 days, P = 0.04), and morbidly obese recipients (22.4 days, P = 0.047) versus the normal-weight recipients (18.0 days). There was no difference in death-censored graft survival or patient survival between the groups. Overweight and obese patients have significantly increased morbidity in terms of complications after liver transplantation and, consequently, longer ICU and hospital stays."
Out course you can always come to Northern California for a transplant too but the same rules generally will apply. UCSF, California Pacific Medical Center and Stanford.
Please don't type in all capital letters that means you are shouting and it makes it difficult to read.
Best of luck to you!
Hector
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