Stage 4 Cirrhosis in Tucson, AZ

[burgus]

I was told in August, 2006 BY TELEPHONE BY A FRIGGIN' MEDICAL ASSISTANT that I have stage 4 Cirrhosis caused by Hep C.  She told me to call her in six months for a prescription for another ultrasound to see how I am doing.  I asked her if I forgot to call, would they give me a reminder.  She said no.  A year previous to this, I tried to obtain interferon treatment while Social Security under this same doctor but got caught up in some stupid MediCal loophole caused by the interim awaiting Bush's prescription assistance to kick in.  I forget what they called it -- some protocol or another.  It was some interim program and I couldn't figure out how to navigate the maze and my doctor refused to help.  Figuring out my insurance is totally MY PROBLEM, he says.  

His name is MacInery (I think).  He really couldn't give a **** if I live or die.  He couldn't even do the decency of telling me my prognosis in an office exam to my face.  I have Secure Horizons.  I do believe it is their hope that I die without causing them too much expense -- and this doctor is in on their HMO plan -- after all, he wants to make a profit.

Even my general practitioner is a Secure Horizon zombie.  Four years ago he changed my thyroid medication prescription and hasn't blood tested me since.  Rather, my pharmacy calls him when my subscriptions expires and he issues ONE YEAR renewals!  He doesn't even know whether or not his original dosage adjustment has worked.  He doesn't care.  He doesn't want me to show up in his office.  

Every year, I call his office to ask about flu shots.  Every year, his staff tells me they are on back order and to call in October, then November, then December -- then I go to a grocery store and fork out the bucks for my flu shot.  My doctor is lying about never receiving flu shots.  He NEVER orders them!  

These people are killing me.   It is so hard to fight when you sleep most of your life away.  I am so angry.

I'll be damned if I get a telephone prescription for a very expensive ultrasound only to be told that I need another biopsy and then to be told by telephone that I am so much worse but not to bother them for another six months, at which time I should call for another prescription for another ultrasound.  I don't want anymore cold death sentences by telephone where I can't ask any questions about my future.  

No doctor to talk to.  No one to understand what is to come.  I am totally abandoned and I feel like dead man walking.   I am so depressed that I can't even fight for myself.  Part of me hopes I won't wake up tomorrow.  I watched my husband die from this disease ten years ago (10/30/06).  I just feel hopeless since medicine is not on my side.  

Please excuse my negativity.  I sleep 12 hours a day and have severe edema in my right leg and am developing similar edema in my left leg.  A couple of years ago, I saw my GP and told him I think I have diabetes (have severe hypoglyecemia (previously diagnosed in the '90s plus my dad is a diabetic and tested me and my blood sugar is higher than his!).  GP said, "You probably do" -- and then refused to discuss the problem further.  

I think I am dying and nobody is on my side.  Forgive the disjointedness of this posting, but I think you all get my drift.  Part of me wants to die and get it over with because I can't beat the HMO Medicare system but another part of my loves life.  I am 52 years old and might have been infectected as early as age 15 and as late as age 26.   This disease has been incubating for a long time.   What should I do?

Know any GOOD doctors?

[jmjm530]

Sorry about your difficulties. Sounds like you do need a good doctor.

No personal knowledge in the Phoenix area, but you're pretty close to the Mayo Clinic in Scottsdale. You might try there. Call and ask for their "hepatology" department or for a list of "hepatologists". These are the liver specialists. Given your circumstances, you don't want to see a regular doctor or a Gastroeneterologist. Just a hepatologist.
Here's the link: http://www.mayoclinic.org/contact/  and best of luck.

-- Jim

[GrandmaA]

So sorry to hear about your HMO and doctor problems.

I started with a gastro and switched to a hepatologist at week 11 and never regreted it. In fact, the gastro moved to Oregon months ago.

[burgus]

I can't go to Mayo without a referral and my doctors in Tucson won't refer me.  I am in an HMO and can't go anywhere without their permission -- including a visit with my gastroenterlogist who is too busy performing rectal exams to see me.  There are no hepatologists in Tucson.  There is only one other gastroenterologist in Tucson and my primary said he would refer me there.  That was about six months ago.  I have never heard from him again and now so don't believe in him that I am determined never to see him again.   The second gastro is 30 miles away.  I have a gut feeling he won't be an improvement.  

My gastro's med assistant told me to call them if I have symptoms but they have already informed me that edema is not related to liver failure.  This is the only symptom they have told me ANYTHING about.  They told me to call them if I have symptoms, but they haven't told me what symptoms to expect.  I do not that ruptured varices are a symptom -- but I might find it difficult to call when that event happens.   .  

I beg the med assistant's pardon, but -- when I was a real person/patient being treating at USC hepatitis clinic, they became very alarmed when I first showed signs of edema.  Plus, I know what I have read on the internet.   And even if edema is NOT a sign of liver failure, it is certainly a sign of something.  So I really can't understand why nobody in my HMO cares to follow up.  

When I was treating in Orange County, CA and knew I had to move back to either Phoenix or Tucson to be close to my newly widowed dad, my GOOD doctor said, "Whatever you do, don't move to Tucson.  You won't get ANY treatment there."  He was right.  Tucson used to have a transplant center, but it was closed down due to some very sorry events that occurred there, including kicking a 15-year-old girl in the hospital awaiting transplant off the list for wandering out of the hospital.  The girl died shortly thereafter.   Given that most people with end-stage liver failure have some degree of encephalopathy, that girl might not have been quite right in the head due to illness.  

I am trapped here in Tucson.  A recent transplant patient I know gave me the name of the transplant coordinator at Mayo, but I can't get an appointment until my HMO refers me.  I could go for evaluation and pay my own way, but it costs $16,000.

The only other Medicare HMO here in AZ is Blue Cross.   I will try to find out if they are any better, but I think my only other chance is to disenroll from my HMO and go strictly to Medicare where I can see whatever doctor I want -- but I don't think I'm going to be able to make the co-payments.  I really can't afford the co-payments my HMO requires.  

But thanks for your suggestions.  If anybody out there has done it strictly with MediCare, I would love to hear how they fared.  Is this the way to go?   I'm not even really sure what stage 4 Cirrhosis means.  That IS the last stage isn't it?   I wasn 't even aware before this diagnosis that there was a stage 1, 2, or 3 cirrhosis.  Last biopsy showed my to have grade 3 liver disease (fibrosis) in 1997 and grade 0 liver disease in 2000 after 3 years interferon treatment.  I thought grade 0 meant my liver had regererated and that I had bought years more to live.  I would love to know if anybody out there understands this term "stage 4 cirrhosis."   For all I know, there is only one stage 4 -- which is cirrhosis -- period, which follows fatty liver and fibrosis damage.   All I know is that I have been sick for many years and now am very alarmed because I sleep 12 hours a day and can't make it on a shorter amount of time.

Sorry for the angry and negative tone of my previous writings.  I am just so frustrated here and think my doctors are either stupid, in the HMO's pocket -- or both.

Thanks, all.

[merryBe]

we hace had trouble garlore with insurance, and diagnosis. My husband finally took a job with the school district just to get the blue cross insurance. So far everything has been approved, and I get to see the top docs in the city. He only works 6 hrs a day, and gets full benefits. Our monthy premium is 100. We'd be lost without it, everything I'm on comes to 60,000 and thats just the meds, not the docs and tests.
So my best advice is get a government job, they have the best benefits. I don't even feel guilty after paying taxes for 40 years if somehow I get special treatment now. It couldn't have come at a better time.
It does no good to stay angry, it took my doc years to discover I had HCV even though I had all kinds of common symptoms,,,,but the good news is the treatment has had time to be tested, and been getting good results for 3 years, so get on it NOW, even if you have a higher paying job, without insurance to cover this disease you're dead in the water, so drive a school bus, or help in the library, or whatever, it's not a bad gig and if you don't fight fire with fire.....well....good luck to you!!!

ist google hepatologists in your area, then make an appt., then get in an app.If you are real sick it may be hard. But the good thing is the bus drivers drive 3 hrs, get a 4 hr break (so go home and lay down) and then they drive 3 more hours. It's not perfect, but if it means life, and you want life, you gotta try.  UR In my prayers.

[jmjm530]

Glad to see you're not giving into to a difficult situation and are actively exploring options like switching HMO's, Medicare, etc. The more you push, the more success you will eventually have.

As to "Medicare", don't know much about it, but why don't you post a new thread with the title "Anyone treat with Medicare". Hopefully someone will see that post who can give good advice. Meanwhile, call Mayo and find out if they will accept Medicare for their evaluation.

As to the $16,000, that's probably for an in-hospital multi-day evaluation, and all many of us initally need is a good consultation with a hepatologist where we bring all our medical records and biopsy reports, etc. That shouldn't cost more than $200-$600, depending on where you live. Maybe call one of Mayo's hepatologists and find out what they charge for such a consultation. If you want to go out of state for a consultation, Dr. Gish has a very good reputation here:
http://tinyurl.com/jdceu  Might be worth the travel for a one-time consultation if you can't work something out with Mayo. Gish could then work out a plan perhaps with a local doctor and meds can be supplied by the drug companies for free if your insurance won't pay.

You can also make waves with your doctor and insurance company to get the referrals it appears you sorely need. Phone calls to supervisors, letters, contacting consumer advocacy groups in your state, your congressman, even getting a lawyer. And then there are "workarounds" like 'Merrybe's' idea above -- or perhaps even moving back to CA temporarily to qualfiy for a different insurance plan if feasible.  

But whatever you do, keep forging ahead, and hopefully you will get to the right doctor eventually.

Stage 4 (cirrhosis) is a wide category with many levels. It is by no means a death sentence and in fact cirrhosis can often be reversed with successful treatment. First step is to get yourself evaluated by a good hepatologist. For that reason, you should start collecting all your medical records now, including blood tests, scan reports, etc. Also get hold of your original biopsy slide set as the new hepatologist may want to look at them.

All the best moving forward.

-- Jim

[dlr2007]

What you're going through with these so-called doctors is inhuman- I'm so sorry. They should really be reported, but that's a different battle. You're more important right now. Is there any way you could change Primary Care Physicans (PCP)? It all starts with them- if they give good referrals, you see good docs. The government job sounds like a great idea- but if you can't find one, I would check out Medicaid. You must request info first- a list of their docs (look for hepatologists, though I have a gastro and he's great). Check out what they offer carefully because once you make the switch, it's hard to go back. And getting on Medicaid takes lots of paperwork. Look for any free healthcare clinics in your area or the neareest city- they sometimes will help you out with the paperwork process with Medicaid. The only thing about Medicaid is you can't make or have much $$- if you have savings over a certain amount ($2000 I think, but make sure!)- just get a safety deposit box at the bank and stash the rest in there. I'm on MassHealth, which is a type of Medicaid in Massachusetts, and I get great care on it. None of this is easy, and when you're not feeling well it's overwhelming, but something's gotta be done- these docs you're dealing with are a bunch of A-holes. I don't even know if I'd trust their diagnosis- but obviously, with the edema you have (I'm guessing it's similar to ascites), you can't discount the idea of the damage to your liver being significant.
  I know navigating the system of health care is confusing and seems impossible sometimes, but I know there is bettter treatment out there for you. Maybe there are no leading hepatologists there, but there must be a few compassionate doctors with  knowledge of Hep C. That's all you need, a doctor willing to work with you and help you, and refer you if he can't handle something. You can find out enough on here to supervise your treatment and advocate for yourself, too.
  Best of luck,
Dee