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Author Topic: An open letter to my doctors  (Read 3764 times)

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Offline wishihadacat

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An open letter to my doctors
« on: March 24, 2007, 04:20:02 PM »
My Dear Doctors:

I can say with a great degree of certainty that I have had HCV & HIV for almost 28 years, which may or may not give me the questionable distinction of being the longest living heterosexual male in the United States, if not the entire world, who is host to both viral "guests".

I am writing you this letter because I need your help.

You may already know this, but being a doctor is not unlike being a defense attorney, and being a defense attorney is very much like being a doctor; our ďpatientsĒ  put ourselves in our hands and we tell them what to do when they in trouble because they donít know all the rules,  and they donít know what to do.

Like you doctors, we have the skills and knowledge that we have learned from countless hours of study and practice and years of experience.

And our clients listen, often sheepishly, and generally they take our advice and follow our instructions in a semi-dependent,  quasi-parental relationship. In the practice of criminal defense, which has been my line of work for the last 25 years or so,  we tell our clients how many months or years they must serve in prison if they are convicted after trial and what the alternative is -  in years and months - if they accept a negotiated plea bargain.

And we give them our advice.

And like bad children, they rebel. They donít listen.

Sometimes,  although not very often, our clients are right, because only they can know what it what it means to lose your freedom - to endure the horrors of constant confinement  in 6' by 9' concrete cells, and to suffer the violence and degradation of prison life. 

Likewise, as patients, only we know what it feels like to endure the side effects of the treatments you doctors prescribe, just as only we patients experience the effects of the drugs that you prescribe for us, and the consequences if we do not take our medicines.

But we need to know the facts. We need to have a sound basis to decide what to do.

Have you been honest with us? Can you really know what our futures are?

Itís not because you doctors donít mean the best. Like our parents and their parents before them who have had to contend with the ever-changing consequences of human existence, there are always new problems you have never seen before and can only guess the answers.

But tell us the truth. Tell us what you know. Tell us what you donít know and how much of your medical advice is really just your educated best.

HIV is a new condition. The medical profession does not yet know how long we HIV positive individuals will live and what the long-term consequences will be of the viral infection itself, of the impairment of our immune systems  and of these new and powerful chemicals that we put into our bodies.

How long will I live? You wish you knew the answer to that. I wish you knew the answer to that.
« Last Edit: March 24, 2007, 10:25:53 PM by wishihadacat »
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Offline zeb

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Re: An open letter to my doctors
« Reply #1 on: March 24, 2007, 04:43:13 PM »
Hi wish,

28 years! What's you secret? I don't know how old you are now. But, what do you expect? is your health still okay and are you heading for the next 10, 20, 28 ore more. tell me.

Greets,
Zeb (another heterosexual planning for a long future)

Offline wishihadacat

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Re: An open letter to my doctors
« Reply #2 on: March 24, 2007, 05:09:00 PM »
Zeb -

My secret? I wish I could say it was clean living and a healthy attitude, but to quote Doc Holiday in the movie "Tombstone", "my hypocrisy only goes so far."

Genetics undoubtedly has had much to do with it - who the hell knows?

I'm in my fifties now. How long will I live? How should I approach the future? These questions have been raised often in these forums. I posted this thread because it seems to me that in the medical personnel upon whom we rely, although generally caring and knowledgeable professionals, there is still much room for improvement.

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Offline milker

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Re: An open letter to my doctors
« Reply #3 on: March 24, 2007, 10:16:52 PM »
Iwish,

28 years ago doctors had no idea of what was HIV, it didn't even "exist". You're one of the rare survivors of this disease, you must have suffered a lot during the first 20 years, seeing friends die, wondering everyday when you will die, but you managed to stay with us and this is an amazing achievement.

You have certainly studied this disease and followed the discoveries more than anyone else in this forum, you must have a knowledge that not every infectious disease doctor can possibly have. Given your case, you must have high expectations, but they cannot be fulfill. The doctors you're writing to are newbies compared to you.

Every patient is different, every patient has a path that has to be understood. You obviously are one of those rare ones that made it through the "rough times".

You should be part of the science, play a role in it, not just be a spectator. Educate them, work with them. Knowledge is power.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjasô

Offline Central79

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Re: An open letter to my doctors
« Reply #4 on: March 25, 2007, 11:51:18 AM »
Hey Wish

Thanks for posting your letter. It's great to see people doing well long term with HIV, not to mention HCV superinfection on top.

I hope you continue to do well. My personal view on life-expectancy that as long as you maintain VL suppression you will live a pretty normal lifespan. I read a recent study that basically lops 11 years off HIV positive lives compared with HIV negative controls. That assumes you're infected aged 25. It was pretty well done, and doesn't take into account the inevitable major advances that will be made.

All the best,

Matt.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline zeb

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Re: An open letter to my doctors
« Reply #5 on: March 25, 2007, 03:02:41 PM »
Hi you all,

perhaps you should fill in the questionnare in this thread:
http://forums.poz.com/index.php?topic=10560.0

i mean 28 years... wow

see ya & take care

Zeb

Offline kellyspoppi

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Re: An open letter to my doctors
« Reply #6 on: April 20, 2007, 09:30:14 PM »
zeb, we meet again, on what has to be a very encouraging topic for you.
i have been positive 22 years. my virol load is undetectable and my cd4 is 900.
this is the completion of my 2nd year on my current regimen.
i should also inform you that my wife, who is co-infected with hiv and hep c (16 years now) is running at undetectable and cd4 840. her hep c is currently dormant. she too is on her second regimen after a remarkable 3 1/2 year long drug holiday. imagine that! boy was i jealous. mine only lasted 1 year.
with 22 years under my belt i have seen alot & read alot about treatent options and strategies from our medical professionals. the 1 thing that remains consistent is that there is no right answer to what is best for everyone. there is no 1 right answer for when to start meds, but i can give you my opinion based upon what i have learned through my own medical history about some of the treatment theories that are out there.
before there were meds available we were on our own against hiv. obviously some of us had something different about our make up that allowed us to beat this thing. in my case i would like to say it was when i decided to get help for my depression, slow down on the alcohol consumption, and get involved in excercise. help for depression consisted of a wide variety of methods, some recognized by professionals and some not. i was trying to deal with the loss of my fiance to hiv and a year later the loss of my dad to lou gehrigs disease. my fiance died suddenly without warning, so finding a way to say goodbye and subsequently let go required the help of a psychic/medium. after a deep cleansing meditation, she gave me that opportunity and i walked out of her home with no more depression and a huge smile on my face. continued hypnotherapy sessions and reading related self help books placed me on a healthier path.
i was on a war path after those deaths so every chance i had i was hitting the bars like there was no tomorrow. once i began on my new path, controled consumption became easier, with an occassional frat-like blowout every now and then. the longer i have lived on these meds the less alcohol i find i can consume. no more beer as it acts like a sedative after just a few.
in regard to exercise, for me it was brisk walking. i was able to reduce my weight from 252 down to 208 over a 3 year period of time. but so much anger was behind my agressiveness on the walks that i began to have alot of back problems, ending with a perminent injury. now i just walk for fun, weight is up to 225, but i am no longer angry. mission accomplished. i also tried lifting weights but hurt myself with them as well, so i ended that within a few years after starting it.
lets talk meds. i didn't start any until 1996, so that is 11 years after i was infected. i started with azt & 3tc and as soon as PI's were approved, i switched to combovir and viracept. by now i was reading poz magazine and body positive, trying to decide which was the best PI to be on. at the time viracept was pro- fessing to have the best results with cross resistence, which we later found out was a lie. for some stupid reason i started taking viracept 1 pill 3x a day instead of the 3 3x a day. by the time i learned of my error i had gone a year between undetectable & below 5000 VL. i then thought, why not see what 2 2x a day does and got another year of the same before i actually then switched to the recommended dose. with that i held strong until 2003. took a year off and then started kaletra/viread/viramune in 2005 and you know my current numbers.
during all this, we read about dr david ho telling doc's to hit the virus as soon as you were infected with everything you got. knowing what i know now, i'd be pissed if i had been told to do that and waisted those first 11 years i could have gone without meds. that theory went sour!
there are many other theories out there about when to switch combo's and how the longer you go on a therapy with detectable levels, the greater chance of further cross resistence. question? who is behind these statements. is it the doc's or the drug companies that are profitting on our continuing revolving treatment regimens?
my current regimen has increased in price an amazing 40% since i started it in april 2005. this is while aids activists and seniors were pounding the floors of congress begging for cheaper meds. what gaul!
be the best patient you can be by doing your homework. keep good records about your counts, and what causes your changes in numbers and side effects. be your best advocate for treatment decisions by being prepared for your doctors visits.
recognize that while these meds are saving lives they were fast tracked and trialed over short term periods with little else known about them and their long term effects.
most of what i learned was by trial and error, and sometimes what i felt were my most informed decisions turned out to be based on lies from drug companies.
although i appreciate them for their ability to make these life saving meds, they are certainly not getting poor by keeping me alive. it is all about the more options we leave open to ourselves, the longer we have to live.
maintain a positive mental attitude and be the best advocate you can for your self! get educated about your treatment options by reading these posts and poz and other aids related periodicols.
zeb, i hope this helps. sorry for the length.
kellyspoppi

Offline Ann

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Re: An open letter to my doctors
« Reply #7 on: April 21, 2007, 06:39:39 AM »
Fantastic letter Wish! Thank you for posting it. If I ever get my printer up and running, I'll print it out for my own doctor to read. He's one of the few who does tell it like it is and does his very best to help his patients make informed decisions - so I'm sure he'll appreciate it. He might even pass it on to some of his more reticent colleagues.

I'm curious about your coinfection. Have you had the hcv treatment? What's your hcv genotype? I ... was, I guess ... coinfected with hcv genotype 3a and I successfully cleared it. I finished the treatment four years ago this month and my latest hcv VL came back undetectable in January. We've been checking every six months or so since the completion of treatment and he now says we won't bother checking for two years.

The reason I'm curious is because of your longevity despite coinfection. Whatever you're doing, it sure seems to be working for you and I wonder how hcv fits into the picture.

Thanks again for posting your letter.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wishihadacat

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Re: An open letter to my doctors
« Reply #8 on: April 21, 2007, 07:26:16 AM »
Update: After 5 weeks of "chemo-lite" (which is what the Pegasys-Ribivirin treatment feels like) the treatment failed and I stopped. The side effects were truly miserable, and it took more than a week before the HCV meds left my system, but I'm now feeling healthy again.  The result - that I still have HCV -  does not really trouble me, as it takes years for HCV to inflict its damage on the liver. I can probably continue without treatment for another 10 years, and perhaps in that time the pharmaceutical industry will come up with something more effective and less toxic.

My HCV genotype is Type 4, the so-called "Egyptian strain", which is relatively uncommon in the US.

The secret of my longevity? Just good luck in the genetic lottery, and perhaps the fact that I have been leading a relatively healthy life (MOST of the time, lol.) 

I like to think that there is some cosmic reason why I continue to thrive after so many years of HIV-HCV coinfection, but that is undoubtedly my own romantic fantasy.

Whatever happens, I will continue leading my improbably successful and incredible life.

If there are any hot babes out there looking for a date....


« Last Edit: April 21, 2007, 07:30:18 AM by wishihadacat »
Your name here  X_______________

Offline Ann

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Re: An open letter to my doctors
« Reply #9 on: April 21, 2007, 08:21:17 AM »
Hi Wish,

I'm surprised your treatment was declared a failure after only five weeks - as far as I am aware they usually give it twelve weeks before deciding. I was undetectable by week ten, but I rather doubt I would have been by week five as I started out with a VL in the 300 million range.

The treatment IS hell. I did it for the whole 52 weeks and I call that year my "black-hole" year, because I remember so little of it - other than the constant side-effects. I was given the option to stop at six months, as they do with people infected with hcv genotype 3a without hiv, but I didn't want to risk having to do the treatment again. I wanted to make sure I got it over and done with.

It took me a good three months before I finally felt side-effect free and it was actually six months before I started feeling anything like my old self again. It WAS HELL, but I think it was worth it because I don't have to worry about hcv anymore, and I'm certainly not going to put myself at risk for it ever again.

Anyway, as I said, whatever you're doing seems to be working for you and long may it continue to do so! And you know, I don't think you're just being romantic in thinking that there is some cosmic reason for your longevity. You've obviously got things to do before it's your time, so enjoy your time and keep on truckin mister! Good karma, good genes, good luck, who knows? Enjoy!

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wishihadacat

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Re: An open letter to my doctors
« Reply #10 on: April 21, 2007, 08:50:53 AM »
A - The doctors declared it a failure because my HCV viral load showed a .5 log drop after 2 weeks (from 800,000 to 200,000)  but no further decline when they tested again at 4 weeks (still 200,000.)

This was consistent with results of my research, the gist of which was that a 2.0 log drop or better after 4 weeks is predictive of a successful  long term sustained viralogic response (SVR), while a failure to attain a 2.0 log or better decrease is predictive of treatment failure.

Since I now have experienced what you went through, I do congratulate and admire you. Five weeks of that rat poison in my body was bad enough; you went through hell for a very long time, yet you made it through to the light.

Maybe there is a reason for all of this, and maybe there isn't. The only thing that the universe asks of us is to do is live our lives fairly, honestly, and with integrity.
Your name here  X_______________

Offline kellyspoppi

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Re: An open letter to my doctors
« Reply #11 on: April 21, 2007, 01:59:25 PM »
ann & wish,

thanks for the coinfection dialoge. my wife (kellystiti) is coinfected as well and has been reading your posts on this topic with eyes wide open. her dr has been pushing for her to start treatment and she has been dreading the thought.

i will ask a few questions on her behalf as she is in the spring cleaning mode and does not wish to lose momentum.

her hep c VL is undetectable, and although she also has tested positive for hep b & hep d, they appear to be dormant at this time.

her hiv is undetectable and cd4 is over 800. she is working full time and does not wish to find herself out of work for the kind of time you seem to be indicating from the side effects of this treatment.

she has invested a lot of time in diet, exercise, and yoga, quit smoking, and is in a good place physically and mentally.

what advise could you give her on when she should start this treatment? what readings do you need from her to make an informed decision?

your help would be greatly appreciated.

ann, i also tried to respond to your note but i'm not sure if it got to you. thanks for the pointers and for the positive comments. is this what you were indicating to me?

kellyspoppi

Offline wishihadacat

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Re: An open letter to my doctors
« Reply #12 on: April 21, 2007, 05:49:53 PM »
KP, I'm more than happy to share my personal experience with you and your wife if that will help you make a decision. I'll reply to you privately...
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Offline kellyspoppi

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Re: An open letter to my doctors
« Reply #13 on: April 21, 2007, 10:05:40 PM »
thanks wish. we would appreciate that, and look forward to hearing from you.

kellyspoppi

Offline wishihadacat

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Re: An open letter to my doctors
« Reply #14 on: April 22, 2007, 07:24:42 AM »
ann & wish,

thanks for the coinfection dialoge. my wife (kellystiti) is coinfected as well and has been reading your posts on this topic with eyes wide open. her dr has been pushing for her to start treatment and she has been dreading the thought.

i will ask a few questions on her behalf as she is in the spring cleaning mode and does not wish to lose momentum.

her hep c VL is undetectable, and although she also has tested positive for hep b & hep d, they appear to be dormant at this time.

her hiv is undetectable and cd4 is over 800. she is working full time and does not wish to find herself out of work for the kind of time you seem to be indicating from the side effects of this treatment.

she has invested a lot of time in diet, exercise, and yoga, quit smoking, and is in a good place physically and mentally.

what advise could you give her on when she should start this treatment? what readings do you need from her to make an informed decision?

your help would be greatly appreciated.

ann, i also tried to respond to your note but i'm not sure if it got to you. thanks for the pointers and for the positive comments. is this what you were indicating to me?

kellyspoppi

Has your wife had a liver biopsy to determine to determine if and how much damage the HCV has done? It is usually a very slow acting virus, but it does vary from one person to another. What HCV genotype does she have? Genotypes 2 & 3 respond well to treatment, while type 1, and (supposedly) to a lesser extent type 4, are more difficult to treat. The side effects of treatment tend to be pretty creepy, but its usually a good idea not to wait, and to get it over with. You should consider what else is going on in your lives, etc. Ask the doctors questions! Ask them what they do know and don't know. I have been told that there are drugs in the pipeline. Ask the doctors about them. Research the issues on line, and do not hesitate to ask the doctors questions. I've found that they tend to be a little more candid with you if you demonstrate that you are knowledgable.
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Offline Ann

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Re: An open letter to my doctors
« Reply #15 on: April 22, 2007, 07:49:33 AM »
kellyspoppi,

You say your wife's hcv VL is undetectable - this means she doesn't need treatment. The aim of treatment is to get the VL down to undetectable and if she already IS undetectable, there is no point in going through all the side effects and cost of treatment.

20% of people who become infected with hcv will clear ("cure") the virus on their own. This means that while they will always test positive on the hcv antibody test, they will test undetectable on the VL test. In chronic hcv infection, the VL is typically very high - in the millions.

Your wife appears to be one of the lucky 20%.  Whoo-hoo! ;)

They won't be able to do a genotype test on her as you need a detectable VL in order to do the test. They can't genotype something that isn't there.

I'm surprised her doctor is pushing for treatment. It sounds like you need a doctor who is better informed where hepatitis is concerned.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wishihadacat

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Re: An open letter to my doctors
« Reply #16 on: April 22, 2007, 09:28:24 AM »
K
kellyspoppi,

You say your wife's hcv VL is undetectable - this means she doesn't need treatment. The aim of treatment is to get the VL down to undetectable and if she already IS undetectable, there is no point in going through all the side effects and cost of treatment.

20% of people who become infected with hcv will clear ("cure") the virus on their own. This means that while they will always test positive on the hcv antibody test, they will test undetectable on the VL test. In chronic hcv infection, the VL is typically very high - in the millions.

Your wife appears to be one of the lucky 20%.  Whoo-hoo! ;)

They won't be able to do a genotype test on her as you need a detectable VL in order to do the test. They can't genotype something that isn't there.

I'm surprised her doctor is pushing for treatment. It sounds like you need a doctor who is better informed where hepatitis is concerned.




Ann is absolutely correct: If your wife's HCV viral load is undetectable, there is no advantage to treatment because the point of treatment is to lower the HCV viral load to undetectable. I'm not certain that the 20% clearance figure is correct for HIV/HCV coinfected individuals, but the bottom line is if it ain't broke, don't fix it.
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Offline Ann

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Re: An open letter to my doctors
« Reply #17 on: April 22, 2007, 09:37:33 AM »
I'm not certain that the 20% clearance figure is correct for HIV/HCV coinfected individuals, but the bottom line is if it ain't broke, don't fix it.

To be honest, I'm not sure if the 20% figure is accurate in coinfection either. Actually, the figure usually given is 15-20%, but I was being lazy (or optimistic perhaps). That figure is for people with hep C only but as far as I'm aware, there isn't any difference with coinfection - at least I've never found any studies indicating a difference. Of course, some people were infected with hcv first, some second, and some were coinfected at the same time - so there are variables.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline kellyspoppi

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Re: An open letter to my doctors
« Reply #18 on: April 22, 2007, 04:40:13 PM »
thanks to u both again. i have printed your posts so my wife can read them over and be better prepared for her next dr's visit. we will get back to you when she has the answers to your questions, and all the valuable info you asked about.

 ;D

KP

 


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