Re: A letter to my docs....

[Guest guest]

Merrill: This looks like a good plan. It's sorta like being the general

contractor, providing coordination among the plumber, electrician etc. And

it does a lot of the work for the physicians by having it all together and

pointing out salient points. I hope this increases the chances that some

insightful analysis can take place. Let us know what kind of reaction you

get. Tree

[Guest guest]

Merrill: Hey, I've got an idea! You know how it took some law students to

spring that innocent fella from jail recently? Maybe you could entice some

med students to look it over. You know, get them while they're still

enthusiastic and before they are seeing 2,500 patients a week. They may

welcome the challenge. Tree

[Guest guest]

Thanks, Tree.....

I like the way you put it.....

HUGS.... Merril

[Guest guest]

Good letter Merrill. I think you stated your position very well. Being open

to the Combo Rebetron might be something to reconsider-if you can't handle

you can quit. Other than that milkthistle is a good way to go and have never

heard of any bad effects from it.

Good Luck,

Bob Simons

Sr. Commander

Royal Rangers

Tucson, Az.

http://abbacomputers.homepage.com/bob.htm

For the message of the cross is foolishness

to those who are perishing, but to us who

are being saved it is the power of God.

1 Cor 1:18 (NKJ)

A letter to my docs....

> Hi Everyone.....

> As you all know I have been struggling to decide what to do about some

> tests and a treatment for hepC. Well, I decided. Thought you might be

> interested in the letter I sent to the docs involved. There were about

> 10 pages of lab and radiology results attached. I am hoping that seeing

> some kinds of things all together will turn on a light in one of the

> four heads. I'll let you know; for now I am still doing the balancing

> act as so many of you are....

>

> ******************************************

>

> May 5, 2000

>

> To my docs (Neurologist, PCP, GI, Cardiologist),

>

> I have been trying to decide what my best course of action might be

> regarding the cardiac stress test/liver biopsy/combo therapy for

> hepatitis C. It seems that, although at least three of you have

> expressed opinions about what I should do, the final decision is mine.

>

> I have made a decision not to do any of them (at least for now.) After

> talking to you, reading what I can find, including the information given

> to me by Dr. Reynolds, and listening to " live " stories from the people

> in my hepatitis C and mitochondrial disorder on-line groups, I have

> concluded that the chances of a complication are far higher than the

> potential benefits.

>

> My decision is based on working backwards from the combo therapy, which

> I believe I would refuse because of the high risk of anemia and the low

> level of response. Although there might be other information gained

> from the liver biopsy, I am not sure that it would affect my current

> treatment. If the liver biopsy is not to be done, then there is no need

> for the dobutamine stress test at this time.

>

> That leaves the issue of whether or not to try another anti-seizure

> medication (other than Phenobarbital.) The Dilantin I am currently

> taking was originally given to me for neuropathy; I am now taking 500 mg

> daily.

>

> Please remember that I am living in a body that has a mitochondrial

> disorder, hepatitis C and a significant cardiac history. Even though

> you have all been involved in my medical care to varying degrees, I do

> not know the best way to explain to you how afraid I am to upset the

> very delicate balance I have achieved. This balance, which involves

> both the mental and physical aspects of my being, allows me to be

> functional (although less and less so) on a daily basis. Another thing

> that is easy for others to forget is that I am the primary caregiver for

> my husband who has ever-worsening Alzheimer's Disease. Although he

> seems to do well socially, he can handle neither financial affairs nor

> emergencies. He no longer wants to go with me on medical trips to

> Philly, and was not able to call 911 when I had the GI bleed a year and

> a half ago.

>

> There are a number of questions/issues that I would like to list for all

> of you. Perhaps they are a reflection of the compulsiveness I am said

> to have, or maybe they are things that I can see more readily because I

> am responsible for only two patients. I am not a doctor; that's why all

> of you have come to know me. I realize that many of these things MAY be

> unimportant, but I have no way to know that FOR SURE and feel that I

> must be sure that ALL of you have seen ALL of the same reports that I

> have.

>

> I will listen to " arguments " about why I should reconsider my decision.

> But I would ask you to look through the enclosed information FIRST.

> Because I am familiar with procedures in physician's offices and I want

> to be sure that each of you actually sees this on a timely basis, I have

> enclosed a stamped self-addressed envelope. When this actually gets to

> YOU, would you please just send the envelope (with or without anything

> in it!) back to me. If I don't get the envelope back by May 25, I will

> probably call your office to see if it got there and was filed or put

> in a stack somewhere.

>

> Thanks to all of you for listening and for being involved with my care.

>

>

> ********************************************

> QUESTIONS:

>

> 1. Am I CMV positive (see 3/94 report from AEMC)? Does it matter?

>

> 2. Is it possible that the leg swelling is due to cryoglobinemia?

>

> 3. I am having a significant amount of low back pain which I do not

> believe is due to my spine. If it is due to my liver, is there a way to

> relieve it other than sitting down?

>

> 4. Is there a reason for me not to take Milk Thistle?

>

> ***********************************

>

>

>

>

> ------------------------------------------------------------------------

> You have a voice mail message waiting for you at iHello.com:

> 1/3555/10/_/96144/_/957635518/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

Tree.....

Good idea!!

I have access to med students, but most of them are so tired...almost

like mito people. But I may give it a go anyhow. Actually, I know a GI

fellow who was very intrigued with the mito thing and actually wrote

down some of the web sites....

Hey, does anyone know ANYTHING about cryoglobulins???? Did a couple of

searches, but did not find what I REALLY wanted.....

Merril

[Guest guest]

Bob....

Thanks for your comments on the letter; they were appreciated. As for

the Rebetron treatment, my mind is open. Just have to be sure that the

timing is right and that I have the optimum chance for success, or at

least causing no harm....

Also appreciated your comments on milk thistle.... haven't heard

anything bad on that yet....

Take care....

Merril

[Guest guest]

Hi Merril,

I know that had to be a hard decision for you to have

to make. For your sake I'm glad the decision is done.

We all have to do what is best for us and I'm sure

that is exactly what you have done. I sure can't

blame you for not having the liver biopsy or for not

taking the treatments. Pat said the biopsy was

excrutiating and it continued to hurt for almost six

weeks. He got sooooo sick from the treatments;

nauseated most of the time, very weak, anemic, and

lost almost 50 pounds. People who hadn't seen him in

a while actually thought he was close to death. It

would have been a different story if he had shown some

sort of improvement, but as you already know, his

blood tests did not show ANY signs of improvement at

all. Quite the opposite - he ended up in the hospital

with ascites (his one and only time .. so far), his

immune system dropped so low that he was admitted to

the hospital with a bone infection, and his labs all

got worse. I can certainly understand your decision,

especially since you have to care for yourself and

Bill.

I commend you for your courage, and as always I sent

my love.

Jeanie

--- Merril <allennco@...> wrote:

> Hi Everyone.....

> As you all know I have been struggling to decide

> what to do about some

> tests and a treatment for hepC. Well, I decided.

> Thought you might be

> interested in the letter I sent to the docs

> involved. There were about

> 10 pages of lab and radiology results attached. I

> am hoping that seeing

> some kinds of things all together will turn on a

> light in one of the

> four heads. I'll let you know; for now I am still

> doing the balancing

> act as so many of you are....

>

> ******************************************

>

> May 5, 2000

>

> To my docs (Neurologist, PCP, GI, Cardiologist),

>

> I have been trying to decide what my best course of

> action might be

> regarding the cardiac stress test/liver biopsy/combo

> therapy for

> hepatitis C. It seems that, although at least three

> of you have

> expressed opinions about what I should do, the final

> decision is mine.

>

> I have made a decision not to do any of them (at

> least for now.) After

> talking to you, reading what I can find, including

> the information given

> to me by Dr. Reynolds, and listening to " live "

> stories from the people

> in my hepatitis C and mitochondrial disorder on-line

> groups, I have

> concluded that the chances of a complication are far

> higher than the

> potential benefits.

>

> My decision is based on working backwards from the

> combo therapy, which

> I believe I would refuse because of the high risk of

> anemia and the low

> level of response. Although there might be other

> information gained

> from the liver biopsy, I am not sure that it would

> affect my current

> treatment. If the liver biopsy is not to be done,

> then there is no need

> for the dobutamine stress test at this time.

>

> That leaves the issue of whether or not to try

> another anti-seizure

> medication (other than Phenobarbital.) The Dilantin

> I am currently

> taking was originally given to me for neuropathy; I

> am now taking 500 mg

> daily.

>

> Please remember that I am living in a body that has

> a mitochondrial

> disorder, hepatitis C and a significant cardiac

> history. Even though

> you have all been involved in my medical care to

> varying degrees, I do

> not know the best way to explain to you how afraid I

> am to upset the

> very delicate balance I have achieved. This

> balance, which involves

> both the mental and physical aspects of my being,

> allows me to be

> functional (although less and less so) on a daily

> basis. Another thing

> that is easy for others to forget is that I am the

> primary caregiver for

> my husband who has ever-worsening Alzheimer's

> Disease. Although he

> seems to do well socially, he can handle neither

> financial affairs nor

> emergencies. He no longer wants to go with me on

> medical trips to

> Philly, and was not able to call 911 when I had the

> GI bleed a year and

> a half ago.

>

> There are a number of questions/issues that I would

> like to list for all

> of you. Perhaps they are a reflection of the

> compulsiveness I am said

> to have, or maybe they are things that I can see

> more readily because I

> am responsible for only two patients. I am not a

> doctor; that's why all

> of you have come to know me. I realize that many of

> these things MAY be

> unimportant, but I have no way to know that FOR SURE

> and feel that I

> must be sure that ALL of you have seen ALL of the

> same reports that I

> have.

>

> I will listen to " arguments " about why I should

> reconsider my decision.

> But I would ask you to look through the enclosed

> information FIRST.

> Because I am familiar with procedures in physician's

> offices and I want

> to be sure that each of you actually sees this on a

> timely basis, I have

> enclosed a stamped self-addressed envelope. When

> this actually gets to

> YOU, would you please just send the envelope (with

> or without anything

> in it!) back to me. If I don't get the envelope

> back by May 25, I will

> probably call your office to see if it got there

> and was filed or put

> in a stack somewhere.

>

> Thanks to all of you for listening and for being

> involved with my care.

>

>

> ********************************************

> QUESTIONS:

>

> 1. Am I CMV positive (see 3/94 report from AEMC)?

> Does it matter?

>

> 2. Is it possible that the leg swelling is due to

> cryoglobinemia?

>

> 3. I am having a significant amount of low back pain

> which I do not

> believe is due to my spine. If it is due to my

> liver, is there a way to

> relieve it other than sitting down?

>

> 4. Is there a reason for me not to take Milk

> Thistle?

>

> ***********************************

>

>

>

>

>

------------------------------------------------------------------------

> You have a voice mail message waiting for you at

> iHello.com:

>

1/3555/10/_/96144/_/957635518/

>

------------------------------------------------------------------------

>

>

__________________________________________________

[Guest guest]

Jeanie.....

Thanks for your support.

Thanks even more for telling me of Pat's experience. It is just one

more reason why I do not think I should do this. May I take a copy of

your Email with me when I go to see my cardiologist in about a week???

He is the doc most likely to stand behind me with the GI and the Neuro,

should they try to talk me into it. He will read your account with

great interest because the journals do not tell it like you did.

I am comfortable with my decision. While I am a stubborn person, I try

not to be ridiculous. I WILL listen to the docs if they want to respond

to my letter, but I may still decide NO WAY!!!!

Hoping that this finds you and your family as well as possible......

Please give Pat a hug for me.....

Love, Merril

[Guest guest]

thanks for sharing with us. Sometimes it is really hard to know the line

between quantitiy and quality of life. By having quite a few months to

prepare for my one week of treatment(GIggle) it took a lot of prayer to

decide what to do. I may not try the treatment again. We will have to wait

and see. THanks for putting into words the way most of us feel.

Debra angel in ALaska

[Guest guest]

Debra.....

You are welcome. The details of your experience helped me to make my

decision......

Thanks for sharing THAT.....

HUGS....Merril

PS:Hope you are feeling

better now...

[Guest guest]

Merril,

I hope you know that you always have my support. Only

you can make a decision that you have to live with.

Of course you may take a copy of my email with you. I

hope it helps.

I wanted to tell you Pat's expereince but I wanted to

wait until you had made your decision. You didn't

need this kind of imput when you were already

struggling with your decision.

We are both doing as well as we can. Pat saw his

transplant doctor last Monday and we were both shocked

to hear that he is one point from being ugraded to

level 2B on the transplant list. Level 2B is the

level that patients are transplanted from. So he

stays at level 3 until he gets a little sicker. We

both have such mixed emotions about his being

upgraded. So, we hang tough and continue to live our

lives the very best we can.

Take care of yourself ... and remember that sometimes

being stubborn is OK.

Love,

Jeanie

--- Merril <allennco@...> wrote:

> Jeanie.....

>

> Thanks for your support.

> Thanks even more for telling me of Pat's experience.

> It is just one

> more reason why I do not think I should do this.

> May I take a copy of

> your Email with me when I go to see my cardiologist

> in about a week???

> He is the doc most likely to stand behind me with

> the GI and the Neuro,

> should they try to talk me into it. He will read

> your account with

> great interest because the journals do not tell it

> like you did.

>

> I am comfortable with my decision. While I am a

> stubborn person, I try

> not to be ridiculous. I WILL listen to the docs if

> they want to respond

> to my letter, but I may still decide NO WAY!!!!

>

> Hoping that this finds you and your family as well

> as possible......

> Please give Pat a hug for me.....

>

> Love, Merril

>

>

>

>

>

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__________________________________________________