what's next

[stlawrence54]

I was diagnosed in '04 and treated for a year. I went 4 years with no treatment after Hurricane Katrina , due to losing my home , my job and my insurance coverage. Now I fall under the pre-existing condition category and can't get major medical coverage.. They tell me that I have had Hep C for at least 30 years . I have cirrhosis and lesions and "less than 25%" liver function. In 2010 , I was put on Peg-Intron meds for 6 weeks. Bad side effcets and no improvement made them take me off that treatment. Now I have a new doctor. I now have varices and other stuff and they're tryng to get me into a clinic that specializes in liver disease and transplants , but having trouble getting approved for medicaid (can't afford it otherwise). Meantime , my doctor says he's not going to put me on the new 3-drug cocktail treatment or do much else because he wants those in the transplant clinic, as it's called to deal with that. Meantime , it's been six months , and they're just treating each symptom as it gives me problems , but not treating the disease at all. Have they written me off ?

[stlawrence54]

Thanks for the heads-up on the sodium intake . I do tend to eat small meals throughout the day , as you suggest, but that's not really by design. I don't have much of an appetite lately , so I don't eat much at one sitting anyay.As far as the trans fats and high fat foods , that's hard to avoid living in New Orleans . All the good stuff is high in fat. My sister helps to push me with the fish , chicken and other sources of protein other than red meat . The stuff she brings me is kind of bland for my tastes , though. And the fish or chicken is always baked or broiled , rather than fried , as I would prefer. I know her intentions are to help me , so I eat it anyway , except for the broccoli and cauliflower. I just can't.
As far as physical activity , I do a lot of walking . It's flat here, no hills, so it's not very strenuous. I'm still working , too, though they keep me on light duty.If they would lay me off, I could get by on unemployment while I apply for disability. They mean well by working around my health problems, but if they really wanted to help me , thay should lay me off. I have to have some income , and it takes months to get disability approved,and you can't be working when you apply. Another Catch-22.
Thanks for your info and support.

[eureka254]

I've very sorry to hear of the troubles you've had, and it does seem that you're in the middle of a catch-22. The lack of healthcare resources available for the uninsured and underinsured has left you in the present gap, and Medicare is currently the only bridge that will close it for you. There is no doubt you have pressing medical conditions, and your first priority is getting that Medicaid coverage, whatever it takes... do you have friends or family members that can help advocate for you?  The fact that your condition is stable makes it imperative that you use this time and use all possible effort to get Medicaid.

As hcv liver disease progresses beyond treatment modalities, treatment of symptoms is usually the next course of action.  However, also keep in mind that most doctors will not treat hcv patients with cirrhosis with the new cocktails -- there are significant risks -- but the expertise offered by a Transplant Center may still avail you to treatment, depending on the severity of your cirrhosis.  The fact that you have existing lesions makes getting to a Transplantation Center for evaluation and assessment is ESSENTIAL -- private physicians as a rule do not have the facilities or resources needed to treat and manage progressed liver disease such as yours or malignant lesions.  My husband was diagnosed in 2007 with liver lesions, and had to be referred to a major medical center by his physician; you were informed correctly that most run-of the mill docs really are not equipped to handle those kinds of advanced cases.

As far as taking care of yourself, abstaining from alcohol and limiting Tylenol is good, but there are many other things you can do to help manage your condition.  Keep salt intake to a minimum -- read labels and keep consumption below 1000mg sodium per day -- and avoid trans fats and high-fat foods.  Make sure you eat small meals frequently throughout the day, and make sure to get adequate protein: nuts, fish, chicken are the best sources, and avoid high-iron foods such as red meat.  Exercise as much as you can -- physical activity will help you maintain muscle tone, which is a challenge with cirrhosis. I hope that helps some... I REALLY hope your lesions are benign, and all my best wishes to you.  Good luck. ~eureka

[stlawrence54]

Well, I found out that the particular clinic in the LSU system , at least for now, has indeed written me off. I had an appointment with a doctor there this past week , and he told me that the facilities there are not equipped to handle a case as advanced as mine. They are recommending to the state Medicaid department that I be approved so that I can get into the Tulane University Hospital's transplant clinic. The LSU clinic is public , but the Tulane program isn't. (just like the universities themselves). LSU has a free care program for those determined to be medically indigent. Tulane doesn't .
Before I start getting lectures from arch conservastives about government "hand-outs" such as Medicaid , I would like to explain to them that my situation is kind of  like those folks who were rescued from their rooftops after Katrina. Some were rescued by government agencies such as the Coast Guard and the National Guard. Others were rescued by private citizens in their own boats , in some cases even stolen boats .None of them asked for cash payments . When you're life needs saving , you're not going to stop and ask if someone else's tax dollars are paying for it. You're just happy to get in the damn boat. Besides that , I've been paying into Medicare for 40 years , but not old enough to qualify unless I am determined to be disabled.To save your own life , or the life of a family member , you will accept help from government programs. Look how many of the long-term unemployed former middle-class folks are now on foodstamps. They don't want it , but they need it to feed their families.
Anyway , the doctor says that everything is holding stable right now. I'm not getting any better, but not any worse . My liver is too badly damaged for any of the Hep C meds to help. I have to begin treatment on the liver itself , rather than the disease. If the lesions turn out to be non-cancerous , I will be okay for now, as long as I take care of myself and stay off alcohol and Tylenol. If they are something serious , then I would need to get on a transplant list rather quickly and/or begin chemo.

[stlawrence54]

I appreciate your concerns for me. I don't understand the U.S. medical system ,either and I'm stuck in the middle of it. I sent an e-mail to one of the cable news networks suggesting they do an expose' on indigent healthcare in the U.S. (side note: I almost wrote America there , but a good friend of mine who's a native of Central America always reminds me that citizens of all countries in North , Central , and South America are Americans, too, and that it's quite arrogant of U.S. citizens to speak of themselves as if they are the only people on any of the American continents).
I saw one of my doctors this past week , and , though he had SOME encouraging things to say , it certainly wasn't all good. He personally wrote to the state Medicaid department explaining how important it is for me to get into the transplant clinic at Tulane Univ. Hospital.Then , he told me that there is nothing more that this clinic that I'm currently dealing with can do for me because they are simply not equipped to handle a case as advanced as mine.
But , he did explain that my liver condition is stabilized , not getting any worse , but ,certainly not getting any better . He told me that he was meeting with some of the Tulane doctors later that day for them to read my MRI and Ultrasound images and see what they determine about the lesions. If they are routine lesions , I'll be okay for a good while and don't have to worry about getting on a transplant list any time soon.But , if they are determined to be cancerous , or pre-cancerous, I would need treatment ASAP. I guess that means a transplant , or chem until I can get on the transplant list , as they have determined that my liver is too far gone for the new medicines. They don't do anything to help repair the liver , they attack the disease, which has already done its number on me. Kinda like calling in the Orkin man after your house has begun falling apart from termite damage.
Thanks , and best wishes for you in your fight with this disease,

         Larry

[suezeeque]

I don't have any answers for you either...  But like beeblessed, want to push you to the top.  :)  I'm so sorry that you've gone through all that.  I don't understand the American medical system (I'm Canadian) but I hope you get the approvals you need!

Sue

[beeblessed]

Hi. Geez, it kinda sounds like they have.  So sorry for all that you have been through, especially Katrina and now these season too.  I don't have an answer for you but I'm giving you a bump up in the forum, in hopes that someone else can help.  Blessings and best to you.