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how will I pay for it
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how will I pay for it

about 3 yrs ago I was diagnosed with Hep C and stage 4 cirrhosis.  I quickly started treatment.   I was working at the time and had health coverage provided by my employer.  Though I was so sick, I kept going until the lab called me on a Sunday and advised me to stop meds and call my Dr. That Wednesday I saw my Dr. who advised me to go home and rest the meds had completely wiped me out.  I applied for SSD, but it took a long time and while waiting I used all my savings, sold a car, refinanced our house, and ran our credit cards up so high I don't know if they'll ever get paid.
     Now I have EGD's every six months, I've also had 5 veins banded.  My Dr. has mentioned a liver transplant, and told me we would talk more about it in September.
     My concern is how will I pay for it?  I now have Medicare & Medicare Part D.  Also the lifetime of expense meds I've heard about.
     I've been using med marijuana and now have my wieght back, but I also heard that this would prevent me from qualifying for a transplant.  I know the end is near, and if the only obstacle is smoking pot, I'll quit.  Otherwise, I will continue with this as I feel so much better after.  I gave up drinking and drugging over 20 yrs, ago (except pot).
     Any info would be appreciated.  (please-no anti smoking remarks)
3 Comments Post a Comment
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446474_tn?1404424777
Hi welcome.

I am glad you were award SSDI. It is not an easy task but I assume you have had a number of complications due to your cirrhosis besides varices, and they have become disabling? To receive SSDI you must have decompensated cirrhosis otherwise know as End-Stage Liver Disease (ESLD). I assume you had adverse events such as blood level issues or the treatment worsened your liver disease when you tried to treat your hepatitis C? So you were told to stop treatment? Having ESLD means you should be evaluated for a liver transplant and listed for transplant. If you can't treat your hepatitis C then the only option in time will be a liver transplant.

If you are having endoscopy every 6 months and have been banded 5 times you must have serious portal hypertension and medium to large varices. Are you on a beta-blocker as well? Beta-blockers are the gold standard in the prevention of first variceal hemorrhage in patients with medium/large varices.

AASLD Practice Guideline
"Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis"

In patients with medium/large varices that have not bled but have a high risk of hemorrhage (Child B/C or variceal red wale markings on endoscopy),
nonselective beta-blockers (propranolol or nadolol) or EVL (Endoscopic variceal ligation/"banding") may be  recommended for the prevention of first variceal hemorrhage."


"My concern is how will I pay for it?  I now have Medicare & Medicare Part D.  Also the lifetime of expense meds I've heard about."

Medicare will pay 80% of your costs and Part D will pay for most of drugs. This is both pre and post. Cirrhosis and End-Stage Liver Disease is very expensive. Depending on how long it takes before you get a transplant. Pre transplant costs can be in the hundreds of thousands of dollars. There will be many tests done periodically to monitor your liver disease.

Hospitalization for life-threatening complication of cirrhosis can be very expensive depending on how many times you might be hospitalized and how long you stay in the hospital until they get you stabilized. This is what can happen from ascites, bleeding varices, hepatic encephalopathy, infections and other serious complications of ESLD. It is best to plan for the worse (as far as health coverage is concerned) as these are they are quit common in individuals with long waits for a cadaver donor. If you have a living donor or can be list at a transplant center with a short waiting list you probably can avoid most of these complications. You could also develop liver cancer (HCC) which entails expensive treatments, surveillance and overnight hospitalizations. My 2 TACE treatments for liver cancer were $54,000 each. Not counting surveillance imaging that is performed every 3 months until transplant.

20% of hundreds of thousands of dollars in a lot of money. The transplant itself is many hundreds of thousands of dollars depending on where you have it. After transplant you may be taking up to 40 pills a day and will need to talk at least one anti-rejection drug every day for the rest of your life along with periodic blood tests to monitor for any rejection.

The most important thing you need to do is get "Medicare Supplement Insurance" sometimes called Medigap to cover the 20% that Medicare does not pay for.

"A Medigap policy (also called “Medicare Supplement Insurance”)
is private health insurance that’s designed to supplement Original
Medicare. This means it helps pay some of the health care costs
(“gaps”) that Original Medicare doesn’t cover (like copayments,
coinsurance, and deductibles). If you have Original Medicare and
a Medigap policy, Medicare will pay its share of the Medicareapproved amounts for covered health care costs. Then your Medigap
policy pays its share."

If you are going to have major health costs in the next year I would recommend going with a Plan F. It has the most coverage you can get with a Medicare Supplement Insurance plan. I plan on having a transplant in the next year and may need more chemo treatment so I have a Plan F. It is more expensive because it covers the most. Other type plan have gaps. With cirrhosis nothing is guaranteed. If you choose less coverage and you have something major happen it could cost dearly.

***THIS IS VERY IMPORTANT***
"Why is it important to buy a Medigap policy when I'm first eligible?

It’s very important to understand your Medigap open enrollment period.
Medigap insurance companies are generally allowed to use medical
underwriting to decide whether to accept your application and how much
to charge you for the Medigap policy. However, if you apply during your
Medigap open enrollment period, you can buy any Medigap policy the
company sells, even if you have health problems, for the same price as
people with good health. If you apply for Medigap coverage after your
open enrollment period, there is no guarantee that an insurance company
will sell you a Medigap policy if you don’t meet the medical underwriting
requirements..."

You can read all about Medigap plans here...
http://www.medicare.gov/Publications/Pubs/pdf/02110.pdf

Please check into this ASAP. Look on page 22 for "Your Right to Buy a Medigap Policy". I am not sure how long you have been on Medicare but you should find out is you are still in "open enrollment". You have a pre-existing condition (cirrhosis). Health insurance companies have to accept you during open enrollment no matter what conditions you have. After open enrollment they can refuse to cover you because of the pre-existing policy of the insurance companies.

So find out if you still qualify ASAP It could mean a huge difference in how much you will need to pay out of pocket.

As far as Part D the drug plan, there is only so much you can do. There is the so-called "doughnut hole" that can't be avoided. Most transplant centers will order generic drugs to keep the costs down but there is still substantial out of pocket costs especially just after transplant. You have your Part D so you have done all you can in the area for now. This is just something we all have to manage as best as possible. So there is no need to spend you think worrying about it. It is the gaps in your Medicare that should be your focus as well as getting list for a transplant. One step at a time. You will have plenty of time to educate yourself on all of the complex issues of advanced liver disease and transplant.

Yes, smoking marijuana will prevent you from being listed for transplant. When you get evaluated for transplant they will ask you if you drink alcohol or take any drugs. You must take no drugs and agree that you will never take any drugs that will harm your donor liver for the rest of your life. You will agree to be tested at any time. If drugs are found in your system at any time before transplant you can be taken off the transplant list. Which can be a life and death decision. Some patients have died because they were not given transplants because of the use of marijuana.

So talk to your doctor about getting a referral to a transplant center. Get an evaluation and then go from there. They will tell you what you need to do as you go through the process of waiting for a transplant. They will help you manage our symptoms and help you to manage your health until you are able to get a life-saving transplant. It is a long, challenging journey that can  take a long time depending upon your MELD score. But it is doable. One day at a time.  

Good luck!
Hector

    
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3221166_tn?1346047458
thank you Hector for your promt response.  I will take your advice and check on the medigap policy.  I didn't know about it before.  I've got a bunch of questions now for my Dr.  I will also give quitting pot a try.  Your answers give me hope.  I was just going to ride it out the way I am, because I thought I didn"t have a chance for transplant.  I don't want to leave my husband with alot of bills and I don't want a lien on our house.  I will send an update as things change.  This is so much better for asking the questions that you can't ask anyone else.

thank you Hector

Darlene
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446474_tn?1404424777
Darlene,

My pleasure. I am glad I could help you to navigate the system. You can always send me a private message to be sure I get your communications. If you need any particulars I will share what I know.

I am glad you have renewed hope for a transplant. Sometimes we have to overcome many obstacles to get where we want to go. If we are tenacious and creative we can there is usually an option that maybe we didn't think of until we had to think of it.

Remember I am also on Medicare and have Part D as well as Medigap Plan F from Anthem/Blue Cross here in California because I had them for my work health insurance and they paid pretty much all my costs over the last 5 years. I plan on getting my transplant using this coverage. I also know that at my transplant center many other patients are also on Medicare and they have been able to get their transplants and pay for their post transplant meds. If they can do it, then I figure you and I can do it too.

So keep believing in getting a liver transplant. A transplant can give us hope. Hope of a chance at a second life. To start over again. Maybe you have some goals you want to accomplish. See your grandchildren grow, volunteer for a charity, travel somewhere. Whatever it is, use it to motivated you to get a life-saving transplant. The patients that have the will to live usually have good outcomes. Patients that are angry and blame the world for their problems don't do so well. Advocate for yourself. Always show your doctors you are a fighter and you willing to do what you have to do to live. Then your doctors will advocate for you. And you will get the best care possible. I think that is one reason my hepatologist had me come to the first day of screening for a clinical trial I will be participating in. We only have 4-5 slots at our transplant center and she choose me to apply on day one. How lucky and grateful I am.

Hang in there. You are now putting in place the resources that will enable you to move forward and get the best care you can to manage your liver disease. That is a huge accomplishment!!!

Best-
Hector
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