Re: Follow up care?

December 20, 2010

Dear Penny! So glad to hear from you again. I was hoping that you were still

reading the posts. I forgot to mention that I also have " sarcoidosis " , which is

apparently the main reason that my Doc does not want me to re-treat. Treatment

for HCV is bad for the sarcoid, and vica versa, so Catch 22 caught up with me! I

think and feel that I am good to go for many more years without tx, so I'm not

concerned at all. Plus, I think we all try to learn not to continually worry

about things that we cannot control. btw, I live in SW Florida, where it's

typically 6-10 degrees warmer than Orlando, and there's absolutely no f'n way

I'd swim in my pool or the Gulf. I can't believe that I used to live in Vermont,

and now I'm a complete ninny when it comes to the cold. Hell, we have a fire in

the fireplace when it gets much below 50! Proud to be a wimp! Great to hear from

you, thanks.

>

> To : I'm so sad to hear of your decision not to have a transplant,

but I understand. I'm jealous that you got to swim with the dolphins at Sea

World. I just got back from Orlando and it was cold when we were there, but

swimming with the dolphins at Sea World was just too expensive for me anyway.

>

> I'm so glad that you don't have to do treatment after the transplant, Rick.

The Hep C came back to me immediately after transplant. It is encouraging to

people that not all people need to do the treatment after transplant. I'm doing

really well and am still undetected after a year of finishing treatment.

December 20, 2010

Don't be sad for me sweety , I have had over 23 yrs to come to terms with this disease and I spent 22 of those years fighting it . But mostly I have lived and not let it control me . And I am truely happy with how my life has turned out , sure I wish I didn't have hep c but I wouldn't go back and change a thing . I got infected saving someones life so I can never be sorry about that .

I went to the Sea World in California , it was cold but they give you long sleeved wet shirts which keep ya warm . I already want to go back lol And I probably will only next time I am going swimming with a beluga whale .It's a life time of memories packed into one day lol Now that our children are adults my husband is making sure that we get to spend the rest of our days doing whatever we want . I have to admit , it's been great hahaha

Subject: Re: Follow up care?To: Hepatitis_C_Central Date: Monday, December 20, 2010, 5:03 PM

To : I'm so sad to hear of your decision not to have a transplant, but I understand. I'm jealous that you got to swim with the dolphins at Sea World. I just got back from Orlando and it was cold when we were there, but swimming with the dolphins at Sea World was just too expensive for me anyway. I'm so glad that you don't have to do treatment after the transplant, Rick. The Hep C came back to me immediately after transplant. It is encouraging to people that not all people need to do the treatment after transplant. I'm doing really well and am still undetected after a year of finishing treatment.Penny> >> > > > > > Well one reason is , is that the closest tp center is about 400 miles from here . Also I made a pact with God , I asked him to help me make it long enough to get my youngest baby to 18 and then when he wanted to take me he could . I know for allot of you it sounds silly , but I am keeping my word to him . My fifth child turned 18 this year and since then I have been going downhill . In the last 4 months I have wasted

away 65lbs and my hair is falling out from malnutriction my tumor markers which for thelast 24 years havre been normal are now elevated . My heart is failing and I am in congestive heart failure and have to take a diuretic because of it , I am also having grandmal seizures along with elevated porphyrins and iron levels that just wont stay down . So it's a pretty good indication that my time is drawing near and I am ok with it . I would rather they use the liver for a pediatric patient , I am ending my life while young children haven't even> > started living yet . I am tired of constantly fighting to stay alive , I am not rushing off to die either . I can't do any treatment and if I transplanted I would face the same things but quicker . Reinfection is 100% , no if's and's or but's to that .... all transplant patients have to do the hep c treatment and I can't treat so why waste the liver ? Anyway for now IÃ‚ try eat wellÃ‚ see my

doctor every month and live my life . I went swimming with the dolphins at seaworld last month , so I am not laying down to let hep c take over . I just don't obsess over it anymore lol>

December 20, 2010

Rick - I assume it is because I'm working I have to pay $8 for a 30

day supply, so some meds are cheaper using Target / Walmart. It

might be because of when I was in the Navy, which is 1979 - 1984. I

assume I won't have to pay when I retire. My most expensive med is

the Allegria.

Dear Bill; Yes, I'm on SS Disability and have been for 3 years. The VA encourages you to use your own Doctors! I have a Word doc that has all my medications, dosages and when taken each day. Attached are a list of all my Docs, with addresses, phone, fax and email addresses. Plus, a list of emergency contacts and a page of my life's pertinent medical issues, beginning with tonsillectomy at age 7. When I first saw the assigned VA Doc, he simply read everything over, and prescribed exactly everything that I was taking! There was one med, Zocor, that they do not yet supply, so that is the only one I have to purchase privately. I have to see him every 3-4 months. All my meds I can order online, with the exception of Xanax and Ocycodone, which I have to call in monthly. I reorder about 2 weeks before running out, and then every med is mailed to me. It was so simple that I was shocked. I haven't seen any other Doctor at the VA for anything at all, and my assigned

Doc seems to respect all that my private Docs are doing and prescribing. I have never come close to running out of a med. The biggest chore is keeping a proper log so that I know exactly when to reorder. If you're spending even $100 per month, I would consider taking a day off for the trip. Then explain to the Doc your travel dilemma to see if you can schedule your appointments further apart. The costs of meds I discussed in my earlier post were WITH Medicare! I hit that "doughnut" hole within 2-3 months, where the price goes through the roof. Now it's all free. Your costs may be low enough to not bother with the VA, but if you prepare everything in a Word doc (or OpenOffice.com doc), they'll probably accept what you put down as gospel. Hey, it works for me wonderfully, but I only have to drive 15 minutes, so your situation is quite different. Just some more things to ponder!

Have you applied for Social Security Disability? You could then have Medicare and I believe they cover the drugs too.

I am in the VA healthcare system, but I also have insurance at work. The VA doesn't cover all meds. I tried to get Alegria from them, but they don't. I found www.rxoutreach.com while looking for something for my brother, and saw that I qualify (based on family size and income...a single person can make a little over $30,000.00 per year and still qualify. So I get my meds from the best sources{

Linispril 40 mg 180 days supply = $20 = Rxoutreach

Allegria = rxoutreach

flonaise = rxoutreach

Metformin ER = Target $10 for 3 months

Naproxis = Target $10 for 3 months

The problem I have with the VA is they are in South Austin, and I live in North Austin. It'll take around 2 hours there and 2 hours back, so basically a day off work.

Depending on what the insurance goes up to in June, I might drop it and do the VA. I wish the VA would let you use your own doctor instead of theirs.

I don't get any prescriptions using my insurance from work because there are cheaper alternatives.

..

--

Bill Eastman

www.ke5asu.com/links.html

December 21, 2010

Hi ,

Yes, I'm here. I loved the hospital I had my transplant at too. They are

really good!!

Penny

> > >

> > > Well one reason is , is that the closest tp center is about 400 miles from

here . Also I made a pact with God , I asked him to help me make it long enough

to get my youngest baby to 18 and then when he wanted to take me he could . I

know for allot of you it sounds silly , but I am keeping my word to him . My

fifth child turned 18 this year and since then I have been going downhill . In

the last 4 months I have wasted away 65lbs and my hair is falling out from

malnutriction my tumor markers which for thelast 24 years havre been normal are

now elevated . My heart is failing and I am in congestive heart failure and have

to take a diuretic because of it , I am also having grandmal seizures along with

elevated porphyrins and iron levels that just wont stay down . So it's a pretty

good indication that my time is drawing near and I am ok with it . I would

rather they use the liver for a pediatric patient , I am ending my life while

young children haven't

> even

> > > started living yet . I am tired of constantly fighting to stay alive , I

am not rushing off to die either . I can't do any treatment and if I

transplanted I would face the same things but quicker . Reinfection is 100% , no

if's and's or but's to that .... all transplant patients have to do the hep c

treatment and I can't treat so why waste the liver ? Anyway for now

IÃƒâ€šÃ‚Â try eat wellÃƒâ€šÃ‚Â see my doctor every month and live my life . I

went swimming with the dolphins at seaworld last month , so I am not laying down

to let hep c take over . I just don't obsess over it anymore lol

> >

>

December 21, 2010

Yes, the anti rejection drugs have to be taken for the rest of your life. They

are expensive, but if you have insurance, they're affordable. They usually

don't have any side effects, at least they haven't for me.

Penny

> >>>

> >>> Well one reason is , is that the closest tp center is about 400 miles from