Re: Just DX

[Guest guest]

Hi Cat,

No silly questions here! First, let me say, you go girl! Firing the first doc

was a good first step. We've all been where you were and this is scary stuff at

the beginning. I found out I had it 18 months ago during a routine physical.

That said, even though the first doctor was arrogant (so was mine, he's gone!),

he is right about the liver biopsy. It's the only way they know if there is

damage to your liver and how much. But to not even discuss the other tests with

you (if you've had them) is if not illegal, unethical, and I would take steps to

get your test results. Make sure you always get copies of any tests you have

done, because things happen and we do change doctors sometimes. All LFT's tell

you is if the virus is active or not.

PC - I had a lower eye lift and had my chin liposuctioned off about 10 years

ago. The plastic surgeon had PC after his name, too. It means " private

corporation " . He has incorporated his practice, so if he is sued, he won't lose

any more assets than are in his practice. It's common in the day of

drop-of-the-hat malpractice suits. I'll bet it keeps his insurance rates lower.

Good luck to you and DH!

Marilyn

Just DX

Hey everyone, I've been reading some posts, and must say that I am

touched by each of your stories. My heart goes out to all of you who

are touched by this virus. I will keep you all in my prayers, as I

will be walking the same road most of you in here have walked

already. Last month during a routine physical, my husband was DX

with HCV. I was tested the next day after hearing about his, and I

too have the HCV. All I know for sure right now is that my viral load

is 3,720,000. I don't even know if that is high or not. The GI we

were sent to gave us a colonoscopy, and I got an endoscopy as well.

(I have diverticulosis and gastritis) Then he told me that he wanted

to do a biopsy on my liver. I asked him why, since all my LFT's were

normal. He then said if I wouldn't have the biopsy he wouldn't

treat me. He wouldn't even talk to me about any of the other test

results, so I got a little sick of his arrogant attitude and I fired

the guy. I found a new Doctor. Now this is gonna sound silly, but

after his name is M.D., PC. Does anyone know what the PC stands for?

We've had fun here trying to come up with something, and all we can

think of is " proctology central " ..LOL. So, if any of you happen to

know, please let me know. Any who, I see the new GI guy on this

Friday, he is seeing my husband and me at the same time, which I

thought was kind of cool. Thanks for being here ya'll and I hope I'm

not boring you with my questions. God Bless to each of you. Cat

[Guest guest]

Hi Marilyn, thanks so much for the reply. Now I can rest my brain

trying to think of what PC means.. LOL! I appreciate your thoughts

on the liver biopsy, I will probably end up with having one done..

but I want to know excally why and want to trust the guy who sticks

me. Hemochromatosis runs in my family. I was just tested for the

gene, which I do have but it's supposed to make me a carrier only. My

iron satuation is high at 64%, so is my serum iron, however the

ferritin level is normal. I was concerned about this, and the dr I

fired said I couldn't have the disease with only one gene. I did some

research and found that there are many genes they haven't discovered

yet, so it doesn't mean I can't get iron overload. I tried to

discuss this with the arrogant little man of a dr I fired, he then

said I should have a liver biopsy, he implied that it would tell if I

have iron overload... bah.. the Hemochromatosis Soc. recommends not

having a biopsy to dx hemochromatosis. Evidently this little man

didn't know that... this is why I refused the biopsy from him. I'm

not looking forward to having one at all (can you tell?) By the way,

I did complain to my insurance carrier, and plan to make a complaint

to every agency I can about that fired doctor. I did and always have

kept copies of my lab and proceedure results, I keep copies of my

xrays as well. Tomorrow is the big day when I interview the new PC

Doc.. I'm hoping for some answers on the HCV and the

Hemochromatosis. I got a call from a good friend, and he was dx 5

years ago with HCV. He didn't have insurance, so never got treated.

Now he has portal hypertension, ascites, diabetes, high BP and a host

of other problems. He is trying to get on medical services to get

treated. Please keep him in your prayers, he's not doing to good

right now. Thanks Marilyn for the reply, and God Bless All.

> Hi Cat,

>

> No silly questions here! First, let me say, you go girl! Firing

the first doc was a good first step. We've all been where you were

and this is scary stuff at the beginning. I found out I had it 18

months ago during a routine physical.

>

> That said, even though the first doctor was arrogant (so was mine,

he's gone!), he is right about the liver biopsy. It's the only way

they know if there is damage to your liver and how much. But to not

even discuss the other tests with you (if you've had them) is if not

illegal, unethical, and I would take steps to get your test results.

Make sure you always get copies of any tests you have done, because

things happen and we do change doctors sometimes. All LFT's tell you

is if the virus is active or not.

>

> PC - I had a lower eye lift and had my chin liposuctioned off about

10 years ago. The plastic surgeon had PC after his name, too. It

means " private corporation " . He has incorporated his practice, so if

he is sued, he won't lose any more assets than are in his practice.

It's common in the day of drop-of-the-hat malpractice suits. I'll

bet it keeps his insurance rates lower.

>

> Good luck to you and DH!

>

> Marilyn

> Just DX

>

>

> Hey everyone, I've been reading some posts, and must say that I

am

> touched by each of your stories. My heart goes out to all of you

who

> are touched by this virus. I will keep you all in my prayers, as

I

> will be walking the same road most of you in here have walked

> already. Last month during a routine physical, my husband was DX

> with HCV. I was tested the next day after hearing about his, and

I

> too have the HCV. All I know for sure right now is that my viral

load

> is 3,720,000. I don't even know if that is high or not. The GI

we

> were sent to gave us a colonoscopy, and I got an endoscopy as

well.

> (I have diverticulosis and gastritis) Then he told me that he

wanted

> to do a biopsy on my liver. I asked him why, since all my LFT's

were

> normal. He then said if I wouldn't have the biopsy he wouldn't

> treat me. He wouldn't even talk to me about any of the other test

> results, so I got a little sick of his arrogant attitude and I

fired

> the guy. I found a new Doctor. Now this is gonna sound silly,

but

> after his name is M.D., PC. Does anyone know what the PC stands

for?

> We've had fun here trying to come up with something, and all we

can

> think of is " proctology central " ..LOL. So, if any of you happen

to

> know, please let me know. Any who, I see the new GI guy on this

> Friday, he is seeing my husband and me at the same time, which I

> thought was kind of cool. Thanks for being here ya'll and I hope

I'm

> not boring you with my questions. God Bless to each of you. Cat

>

>

>

>

[Guest guest]

Cat, I have to thank you! I never even heard of Hemochromatosis before your

e-mail, so I did a Dogpile search on it. I have had elevated iron levels since

I was 40. I've been going to Loyola University Hospital, but the clinics rotate

the doctors every 2 - 3 years, so I haven't seen anyone steadily through this

time.

When I did the search, I realized I have so many symptoms of this. My dad died

from Parkinson's, which may show a family link. I have way too much iron, and

too much blood volume. My last doctor was going to start phlebotomizing me, but

then she got rotated and my doctor now didn't think it was necessary. I'm going

to really look into this!

Prayers for you, DH and your friend going out. Good luck with your doctor's

appt. tomorrow!

Marilyn

Re: Just DX

Hi Marilyn, thanks so much for the reply. Now I can rest my brain

trying to think of what PC means.. LOL! I appreciate your thoughts

on the liver biopsy, I will probably end up with having one done..

but I want to know excally why and want to trust the guy who sticks

me. Hemochromatosis runs in my family. I was just tested for the

gene, which I do have but it's supposed to make me a carrier only. My

iron satuation is high at 64%, so is my serum iron, however the

ferritin level is normal. I was concerned about this, and the dr I

fired said I couldn't have the disease with only one gene. I did some

research and found that there are many genes they haven't discovered

yet, so it doesn't mean I can't get iron overload. I tried to

discuss this with the arrogant little man of a dr I fired, he then

said I should have a liver biopsy, he implied that it would tell if I

have iron overload... bah.. the Hemochromatosis Soc. recommends not

having a biopsy to dx hemochromatosis. Evidently this little man

didn't know that... this is why I refused the biopsy from him. I'm

not looking forward to having one at all (can you tell?) By the way,

I did complain to my insurance carrier, and plan to make a complaint

to every agency I can about that fired doctor. I did and always have

kept copies of my lab and proceedure results, I keep copies of my

xrays as well. Tomorrow is the big day when I interview the new PC

Doc.. I'm hoping for some answers on the HCV and the

Hemochromatosis. I got a call from a good friend, and he was dx 5

years ago with HCV. He didn't have insurance, so never got treated.

Now he has portal hypertension, ascites, diabetes, high BP and a host

of other problems. He is trying to get on medical services to get

treated. Please keep him in your prayers, he's not doing to good

right now. Thanks Marilyn for the reply, and God Bless All.

--- In Hepatitis C , " Marilyn "

[Guest guest]

Hi Marilyn, wow, I'm glad I mentioned the Hemochromatosis. It is

another " silent killer " if undetected and untreated. The only

treatment is blood withdrawing a pint at a time. Most doctors know

little about this disease, also known as " Celtic Curse " and " Iron

overload " . The tests needed is, TICB, Serum ferritin and the

Saturation rate. Don't wait to get back at the doc about your iron

level! Good luck, and God Bless. Cat

> Cat, I have to thank you! I never even heard of Hemochromatosis

before your e-mail, so I did a Dogpile search on it. I have had

elevated iron levels since I was 40. I've been going to Loyola

University Hospital, but the clinics rotate the doctors every 2 - 3

years, so I haven't seen anyone steadily through this time.

>

> When I did the search, I realized I have so many symptoms of this.

My dad died from Parkinson's, which may show a family link. I have

way too much iron, and too much blood volume. My last doctor was

going to start phlebotomizing me, but then she got rotated and my

doctor now didn't think it was necessary. I'm going to really look

into this!

>

> Prayers for you, DH and your friend going out. Good luck with your

doctor's appt. tomorrow!

>

> Marilyn

> Re: Just DX

>

>

> Hi Marilyn, thanks so much for the reply. Now I can rest my brain

> trying to think of what PC means.. LOL! I appreciate your

thoughts

> on the liver biopsy, I will probably end up with having one

done..

> but I want to know excally why and want to trust the guy who

sticks

> me. Hemochromatosis runs in my family. I was just tested for the

> gene, which I do have but it's supposed to make me a carrier

only. My

> iron satuation is high at 64%, so is my serum iron, however the

> ferritin level is normal. I was concerned about this, and the dr

I

> fired said I couldn't have the disease with only one gene. I did

some

> research and found that there are many genes they haven't

discovered

> yet, so it doesn't mean I can't get iron overload. I tried to

> discuss this with the arrogant little man of a dr I fired, he

then

> said I should have a liver biopsy, he implied that it would tell

if I

> have iron overload... bah.. the Hemochromatosis Soc. recommends

not

> having a biopsy to dx hemochromatosis. Evidently this little man

> didn't know that... this is why I refused the biopsy from him.

I'm

> not looking forward to having one at all (can you tell?) By the

way,

> I did complain to my insurance carrier, and plan to make a

complaint

> to every agency I can about that fired doctor. I did and always

have

> kept copies of my lab and proceedure results, I keep copies of my

> xrays as well. Tomorrow is the big day when I interview the new

PC

> Doc.. I'm hoping for some answers on the HCV and the

> Hemochromatosis. I got a call from a good friend, and he was dx

5

> years ago with HCV. He didn't have insurance, so never got

treated.

> Now he has portal hypertension, ascites, diabetes, high BP and a

host

> of other problems. He is trying to get on medical services to

get

> treated. Please keep him in your prayers, he's not doing to good

> right now. Thanks Marilyn for the reply, and God Bless All.

> --- In Hepatitis C , " Marilyn "

>

>

>

[Guest guest]

Hi Cat, gosh, I have Internet time today, hasn't happened in months! My last

doctor thought I might have porphyria cutanea tarda, that's why she was thinking

of phlebotomizing me. When my new doctor didn't want to pursue it, she gave me

good reasons why. I had few of the symptoms of it. When I got my DX of HCV, I

could understand her reasoning.

Over the years, I have had doctors ask me about my cherry-red palms. There is

something else that is more common that causes it, but I don't have the other

symptoms of whatever it is. My daughter had a lot of vague immune system

problems growing up, and the doctors thought it might be rheumatoid arthritis or

lupus. She could only have them if both parents had high anti-nuclear

antibodies. I had the tests done, her BioDad was dead. My tests showed I was

way under the numbers to make a definitive diagnosis.

It's so weird, as we go through this, we realize that health care is so much

more of an art than it is a science. They know so little. I don't know how long

you have been diagnosed with Hemochromatosis, but you are savvy enough to ask

for copies of your tests, and to challenge doctors. Good for you!

I was born with something called KT Syndrome (Klippel-Trenaunay Syndrome, if

anyone wants to look it up), and it's why I have Hep C in the first place - I

got blood transfusions during surgery when I was 10 and when I was 12. Having

grown up in hospitals, I have learned that doctors have clay feet like the rest

of us. And having an orphan ailment (there are probably only 500 people with KT

in the world at any given time, although it was diagnosed in 1900), I know that

no one is particularly interested in trying to help us. As you know with

Hemochromatosis, we have to educate the doctors!

And then you extrapolate it to all the people with Hep C, it's a miracle we have

any chance at all! Somehow, we have to get as mad as the people with AIDS,

there are so many more of us, and get organized.

Ok, off my soapbox now, I am going away!

Marilyn

Re: Just DX

Hi Marilyn, wow, I'm glad I mentioned the Hemochromatosis. It is

another " silent killer " if undetected and untreated. The only

treatment is blood withdrawing a pint at a time. Most doctors know

little about this disease, also known as " Celtic Curse " and " Iron

overload " . The tests needed is, TICB, Serum ferritin and the

Saturation rate. Don't wait to get back at the doc about your iron

level! Good luck, and God Bless. Cat