My story really isnt all that interesting or dramatic. I have ITP I
was dx'd when they did the work up for my lumpectomy surgery. The
surgery went fine, they got all the cancer there was none in the
lymph nodes and was then sent to Oncology to be poisoned and radiated
to make sure the cancer was stopped. When I was 30 I had Uterine
cancer so this was my second stike with the big C. Oncology thought
that my 29k count should be higher before they began the chemo. So
they gave me that really evil drug pred. Did i say that I had to give
up my HRT when i found the lump? Its 3 weeks post hrt cold turkey and
they are giving me PRED. Ok I want to live, No more cancer for me
lets get my count up so i can be poisoned for 6 months. I didnt
realize that with my withdrawl from the estrogen, and the pred even
just 60mgs made me NUTS. I couldnt sleep, my leg shook all the time,
I was wired and tired and STARVING all the time.  I wanted real food
steak, cheese burgers protien give me MEAT, I didnt care if it was
2am and I had all the lights in the house on frying burgers and
fries, I couldnt sleep no one else should either. by the beginning of
week 3 I was not any fun to be around, between crying and complaining
my husband and son would nod close the bedroom door and run for the
car to get away from me.  I told my doctor it was killing me, I know
its killing me taking this stuff.... he grinned and said he didnt
think so at least he hadnt seen anyone die from that short of course
of steriods. [how reassuring]  finally at the end of week three the
onco had finally figured the pred wasnt boosting my count any really,
so we went ahead with the first chemo iv push. Not too bad didnt hurt
i wasnt sick and it wasnt at all what i thought it would be. This
would be easier than i had thought.  3 days later i'm throwing up,
and spent all nite in the bathroom on the floor praying to die.  My
husband moved me to the bed before he left for work brought me the
phone a towel and an ice pak and left.  I woke up 3 hours later, my
mouth was so dry my lips were chapped, i looked at my hands they were
peeling, i was really dehydrated.  i tried to get up out of the bed
and i slipped and hit my temple on the bed, when i tried to get up
off the floor i hit the back of my head on the desk, i was apparently
under it at this point. The phone rang and since it hit the floor
with me i grabbed and was crying. My co worker was trying to calm me
down i was sobbing, "the doctor and my husband are trying to kill
me." What? she said? "the doctor is making me take these pills that
are killing me and Dave wont give me anything to drink."  "Please
help me, Please????" i begged. She said to hold on she would see what
she could do. So while she called my husband to find out why i
thought he was trying to kill me, i called 911 to say my husband and
doctor are trying to kill me.  The dispatch lady was calm and she
asked me again what? "I said they are trying to kill me making me
take pills and wont give me anything to drink.... sobbing"  Right
then my cousin walked in, shes an officer she took the phone
explained i was mentally ill and hung up with the 911 people. My
neigbor brought me two big bottles of Gatorade my husband had called
her since my phone was busy...trying to get him arrested, if she
could be a dear and bring me fluids.  It took 3 days and lots of
gatorade before i was lucid again.  My husband was very angry, that i
was calling around telling people he was trying to kill me. He called
my doctor and they decided that maybe the pred was killing me, and i
got to quit taking it. <whew>
that was 6 years ago, i'm cancer free but still have a low platelet
count it hovers between 20k-39k I dont treat, i take vitamin c and
drink lots of juice, pineapple usually. I have found that this count
is a liveable count for me. I dont bottom out, it does drop and i get
black and blue, bloody nose and gums but i found everytime they gave
me something to take to boost my count; it was far worse than the
symptoms i have from this condition.  I guess i'm lucky not to have
needed hospitalization. Maybe it was the chemo drugs? I just know
that the more chemicals i put in me the worse i feel, and the longer
it takes each time to get back to a comfortable balance in my life.
ok that is it, no er runs, no dramatic trial treatments just a semi
stable low count and me being satisfied most of the time with that.
Ive rambled way too long, you all appear to be very supportive and
friendly here thanks for taking me in.
bonita

My thoughts and prayers are with your Mom and you and your family.

I live in Northeast Pennsylvania -- Dunmore, about 3 miles
from Scranton, PA -- where my hospital is, Mercy
Hospital.  During one of my relapses, I was transferred to
Moses Taylor Hospital (about 4 blocks from Mercy).

Welcome Bonita!  I have had my share of ITP episodes too.  When you are
comfortable, you can share your story. :)
Amy
>
> From: "bonita_5150" <jc_is_5150@...>
> Date: 2004/04/30 Fri PM 09:21:52 EDT
> To: thrombocytopenia@yahoogroups.com
> Subject: [thrombocytopenia] New Here
>
> Hi Im bonita I'm new to your site. I have ITP not TTP.  I also hang
> out at the pdsa discussion board if that is ok with everyone?
>
> I want you all to know I have spent the last hour reading and re-
> reading your discussion of last week. I love it. People are going to
> disagree about things, its great that you are all so supportive of
> one another.Feelings occasionally get hurt but from what i could tell
> it wasnt deliberate.  I love that Phil wants everyone to stop talking
> about religion or you'll scare people away.
>
> So if I promise not to start any major conflict right off can I
> stay??? <giggle>
>
> Bonita
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>

Hi Karen & DeVonda,

My computer has been on the blink again -- just catching
up--- Karen, thanks for the update on Rituxan and the web
sites.  I see my Doctor again in 2 weeks,  I'm going to bring
this in to show him.   Last week when I went for my bloodwork,
when they heard my name, 3 nurses yelled to the phlebatomist
---get extra tubes on her ---, I asked what that was all about,
I think Dr. Tasi (from NY) wants to test my blood again now that I'm in
remission.   I'll keep you posted.  Again, thanks for all the info!
You're wonderful -- hope everyone is doing well.    Nettie

Dear Kendi,

Thank you so much for the website and sharing the information that you've found.
It gives me much hope that we will be able to have more children someday.  I
feel totally blessed to have my little girl, Emma and I thank God every day that
I can be her mom.  I really feel that my onset was triggered by preeclampsia
specifically and my OB/GYN has told me before that there is a very small
percentage of women who become preeclamptic in subsequent pregnancies.  My
husband and I aren't in any hurry to try for #2 yet (Emma just turned one last
month) but we would love to welcome more children into our family someday. 
Right now, the TTP is still a little too fresh in our minds, but hopefully
someday we'll be ready to take the plunge again. :)

Again, welcome to the group.
Hugs,
amy

> From: Kendi Wilson <kendalynd@...>
> Date: 2004/04/30 Fri PM 03:18:13 EDT
> To: thrombocytopenia@yahoogroups.com
> Subject: Re: Re: [thrombocytopenia] New Member
>
> Amy,
>
> I thank the Lord everyday that I am here to share my life with my son.  I also
am thankful that I have one the world's most knowledgeable doctors on my side on
the subject of TTP-HUS and ITP.  My OB/GYN told me to never get pregnant again. 
He said that I would die for sure next time but after many many talks with Dr.
George he had told me that he fully supports  second pregnancy.  I would just be
considered high risk.  Instead of having my blood counts taken once a month, I
would have to go to having them taken more often.  No big deal to me though. 
Dr. George has told everyone who has had pregnancy induced TTP that if you want
to get pregnant again then it is totally possible!  He has said that since I
responded to the plasma treatments the first time then (heaven forbid) if I do
relapse then I will ALWAYS respond to the plasma exchanges.  He has assured me
that I will get better.  I have never relapsed (knock on wood) and so far I have
been in "remission" for a little over 5
>  years.  Yes, I do believe that it was the pregnancy that triggered it, and
yes I do plan on having more children...its just the convincing of my fiancee
that it is ok for me to do so.  He is still not so sure about the whole idea. 
His thinking is that he doesn't want to lose me or the baby and if he were to
just lose me then he would have to raise a baby without his/her mommy.
>
> Here in Oklahoma, we have meetings once every 3 months to talk about new
treatments, findings, and possible causes to this disease.  Is is for everybody
who has been diagnosed with TTP in the state.  So far there have been a little
over 300 since the 1980's.  I am including the link to the website for my doctor
who takes such very good care for me.  It talks about everything you want to
know about the disease.
>
> http://moon.ouhsc.edu/jgeorge/
>
> Hugs,
> Kendi
>
>
>
> Kendalyn Wilson
>
>
> ---------------------------------
> Do you Yahoo!?
> Win a $20,000 Career Makeover at Yahoo! HotJobs
>

Hi Im bonita I'm new to your site. I have ITP not TTP.  I also hang
out at the pdsa discussion board if that is ok with everyone?

I want you all to know I have spent the last hour reading and re-
reading your discussion of last week. I love it. People are going to
disagree about things, its great that you are all so supportive of
one another.Feelings occasionally get hurt but from what i could tell
it wasnt deliberate.  I love that Phil wants everyone to stop talking
about religion or you'll scare people away.

So if I promise not to start any major conflict right off can I
stay??? <giggle>

Bonita

Hi Kendi,
Welcome to the group! Come in, sit down, kick your
shoes off and relax.
Hugs
Suz

>
>
> ---------------------------------
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De'Vonda,
I too hope that you reconisder. You are not an
outsider. We are here because of a common thread, our
health. Each person here, including you, have
something to share with others. Be it what we know
about the disease, or just offering our support to one
another. You are important to us all, and you would be
missed.
Hugs
Suz
--- Lisa Schmitz <catsgreen777@...> wrote:
> De'Vonda,
> I hope you might reconsider.  You are such a support
> to all of us here and an important part of our
> group. I will understand if you choose to leave, but
> you need to know that I hope you don't leave!
> Take care,
> Lisa
>
> "Mrs. Williams-Lasker" <ljadmw@...> wrote:
> Hello Everyone! I hope you all are in good health
> today.  I am
> writing to let all of you know that I am leaving
> this group. I have
> no harsh feelings towards anyone here. I love you
> all.  I sat and
> thought about it and if I am causing problems here
> then I should
> leave because I am the outsider. I do not have TTP
> nor ITP. I am an
> individual that has certain symptoms quite like TTP,
> but I have never
> been diagnosed with this disease.  I have made quite
> a few friends
> here and I will miss you all.  Thanks for all your
> prayers and kind
> words.  Till we meet again... God Bless!
>
> Love,
> De'Vonda
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/thrombocytopenia/
>
>    To unsubscribe from this group, send an email to:
> thrombocytopenia-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the
> Yahoo! Terms of Service.
>
>
>
> ---------------------------------
> Do you Yahoo!?
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Lisa,
Karen is amazing! She does understand this disease so
well, and can tell you the ins and outs of it. I was
serious about her submitting her Primer to a medical
magazine. Heck she could probably write a novel on
this disease.
The bronchitis and sinus infections are a bugger thats
for sure. I get tired of it, and tired of taking the
antibiotics. But, I have no choice. I think I should
buy stock in the makers of Augmentin. I've darned sure
bought enough of it in the last 2 years.
It is good to hear that you dont have to take the
beast. I dont miss that stuff at all. Im sure my
family doesnt miss it either! LOL
Got any plans for the weekend since it is so nice?
It's been rainy here all day today. I'm hoping that it
will be nice in the morning so I can go chair hunting
with my mom. I need one more rocking chair for the
house..don't tell hubby I said that. He swears I have
enough. LOL
Well, I hope ya have a nice weekend. If this rain
keeps up, I will probably sleep the weekend away. :o)
Hugs
Suz

--- Lisa Schmitz <catsgreen777@...> wrote:
> Hi Suz,
> Great to hear from you!
> Yes, I definitely feel like I need a deeper
> understanding of each part that goes into TTP. Karen
> understands so much about the body that it seems to
> help her understand the disease better. I think I
> have so much missing knowledge that it prevents me
> from really understanding.
> I feel so bad for you with your bronchitis and sinus
> problems! That is awful! It seems like you are
> almost always dealing with that stuff. Yuck! I hope
> they get it figured out so you can feel better!
> I had treatment today and it should be 2 weeks until
> my next one. I feel great! No beast for me!
> Thankfully about 2 years ago, I found that I didn't
> need the stuff. Woohoo!
> Well, have a great weekend! It's sunny in
> Washington! I am sure it's nice Florida!
> Take care,
> Lisa
>
> Sue B <suzangel@...> wrote:
> Hiya Lisa,
> I almost need a flow diagram or a cause and effect
> diagram to see what each cell does. I am used to
> looking at those to see what goes where and what
> each
> product line does.
> How ya feeling these days? My bronchitis is finally
> gone. Yehaw! We had to put off my allergy testing
> until the antibiotics were out of my system, so we
> have to wait a little longer to find out what is
> triggering my sinus infections. I know so far that
> the
> pine pollen and oak pollen trigger it, but who knows
> what else.
> How's the treatments going? Did I read that you were
> down to 1 per week? Are you back on the beast?
> Let me know how youre doin.
>
> Hugs,
> Suz
> --- Lisa Schmitz <catsgreen777@...> wrote:
> > I still have a very hard time understanding it,
> too.
> > I have asked my doctor about it and read about it,
> > and I feel like I understand it, but then I go to
> > explain it to someone else, and I realize I don't
> > get it at all. I am a visual person so I think the
> > problem is that I can't I picture what is going on
> > with this disease.
> >
> > Sue B <suzangel@...> wrote:Hiya Karen,
> > Ya know, since I have had TTP, I still cannot
> > understand the role of ADAMTS 13 and the Von
> > Wiledrand
> > factor. What do they do and or not do in the case
> of
> > TTP?
> > On your TTP Primer, have you ever considered
> > submitting it to a medical magazine? Heck, you
> > probably know more about this disease than some of
> > the
> > finest doctors, and could probably teach them a
> > thing
> > or two.
> > Hugs,
> > Suz
> > --- Karen <WiederTeufel@...> wrote:
> > > Hi Phantom - The current opinion in the medical
> > > community is
> > > that "Yes" changes in female hormone levels or
> > > balances may be part
> > > of the problem. This includes things like
> > pregnancy,
> > > menopause, BCP's
> > > and HRT's, and any other illness, condition or
> > > medication that
> > > affects the female hormones. Even though they
> > > believe that the
> > > primary culprit in many forms of TTP is the
> ADAMTS
> > > 13 defect they are
> > > also beginning to see that in some cases there
> > seem
> > > to be co-
> > > triggering factors as well and the ADAMTS 13
> > > aberration may be
> > > dependent on other mechanisms in addition to the
> > > enzyme/antibody
> > > problem, and may have multiple or complex
> > triggering
> > > agents within a
> > > single patient. They are even postulating on the
> > > possibilty of
> > > mulitple-antibodies each of which may prove to
> > have
> > > multiple
> > > triggering patterns. (What a tangled web that
> is!)
> > > Anyone who has had TTP where the cause is
> > idiopathic
> > > is at increased
> > > risk of relapse, period. This is NOT to say that
> > > everyone with an
> > > idiopathic diagnosis of TTP WILL relapse, but
> > until
> > > they can further
> > > narrow the triggering mechanism down to specific
> > and
> > > individual cases
> > > this is the path that doctors (and patients)
> must
> > > adhere to.
> > > This does NOT mean that your particular trigger
> is
> > > hormone-related,
> > > or BCP-related, but it does have to be
> considered.
> > > Unfortunately the
> > > only way to know for sure right now is to try it
> > and
> > > see what
> > > happens. :-) That is a risk vs gain assessment
> you
> > > have to do for
> > > yourself with your doctor's guidance.
> > > As far as pregnancy is concerned I have some new
> > > literature that I am
> > > still working my way thru. That subject will be
> > part
> > > of the new TTP
> > > Primer when (and Oh, Lord IF!) I ever get it
> > > finished. (It has grown
> > > quite a lot. LOL!) But the bottom line appears
> to
> > be
> > > the same as for
> > > any other form of the disease. The risk is there
> > and
> > > the results are
> > > not consistent within a patient group or even in
> a
> > > single patient.
> > > But the current assessment is that subsequent
> > > pregnancies even in
> > > patients whose inital TTP was apparetnly
> triggered
> > > by pregnancy is
> > > relatively low (somewhere in the range of
> 10%-25%)
> > > Of course any
> > > patient with a history of TTP is strongly
> advised
> > to
> > > obtain the care
> > > of an Ob/Gyn specialist for high-risk pregnancy.
> > > From my personal experience: My second episode
> was
> > > within one week of
> > > beginning a regimen of hormone replacement
> therapy
> > > for what we
> > > thought was peri-menopausal symptoms. Did it
> > > actually trigger the
> > > disease? I don't know. I was observing the onset
> > > prodrome symptoms I
> > > described in one of my previous messages for
> about
> > 3
> > > weeks prior to
> > > that, so it's quite possible that the entire
> thing
> > > was a huge
> > > coincidence since I have had the same onset
> > symptoms
> > > in each
> > > subsequent episode and there was no hormone
> change
> > > (at least none
> > > that were not natural for me) during any of the
> > > others. Will I use
> > > any form of oral hormones again? No. Because
> there
> > > is a possibility
> > > it was part of the problem for me.
> > > Absolutely you should discuss these issues with
> > your
> > > doctor. No
> > > matter what your decision is he needs to be part
> > of
> > > the process.
> > > Love ya. Karen
> > >
> > >
> > > --- In thrombocytopenia@yahoogroups.com,
> > > "phantom_mermaid_82"
> > > <phantom_mermaid_82@y...> wrote:
> > > > Hi all! There has been something that has been
> > on
> > > my mind for
>
=== message truncated ===





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Thank you Lisa...I must say that it amazes me to see that all of you are still having all these problems.  I guess I was just one of the lucky ones.  I'll just go ahead and tell my story just in case you are curious.  I was 20 at the time that I was diagnosed.  I was pregnant with my son and had very bad toxemia.  I was put on mandatory bed rest at 23 weeks.  At 33 weeks I delivered my son due to an abruption in my placenta.  I hemoraged and they actually lost me on the table and resusitated me.  Of course you have the catheter in you and they were feeding me full of antibiotics and all that good stuff.  Well in 24 hours they had given me 3000 cc's of fluids and I only had an output of 25 cc's in urine.  That is when they discovered that there was a problem.  I went through another surgery to see if nothing was screwed up because of the C-section.  Nothing was messed up.  They then took my blood to see if there was anything there and that is when they discovered that my platelette count was down to 4K.  They put the port in my groin and imediately started me on the plasma exchanges and kidney dialysis.  The port in my groin eventually failed and that is when they put the one in my sholder going up to my neck.  I was in the hospital for 12 days.  I ended up having to have 2 more plasma exchanges after I left and 2 more dialysis treatments.  By then my plateletts were up to over 150K.  I know that I am one one the more rare ones because mine was caused by pregnancy. 

 

There is another girl in Oklahoma who has ended up relapsing 4 times before they ended up taking out her spleen and seemed to do the trick for her. 

 

I hope all of you are well and continue to do well.  Talk to you soon.

 

Kendi

Kendalyn Wilson  

---

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Hiya Lisa,
I almost need a flow diagram or a cause and effect
diagram to see what each cell does. I am used to
looking at those to see what goes where and what each
product line does.
How ya feeling these days? My bronchitis is finally
gone. Yehaw! We had to put off my allergy testing
until the antibiotics were out of my system, so we
have to wait a little longer to find out what is
triggering my sinus infections. I know so far that the
pine pollen and oak pollen trigger it, but who knows
what else.
How's the treatments going? Did I read that you were
down to 1 per week? Are you back on the beast?
Let me know how youre doin.

Hugs,
Suz
--- Lisa Schmitz <catsgreen777@...> wrote:
> I still have a very hard time understanding it, too.
> I have asked my doctor about it and read about it,
> and I feel like I understand it, but then I go to
> explain it to someone else, and I realize I don't
> get it at all. I am a visual person so I think the
> problem is that I can't I picture what is going on
> with this disease.
>
> Sue B <suzangel@...> wrote:Hiya Karen,
> Ya know, since I have had TTP, I still cannot
> understand the role of ADAMTS 13 and the Von
> Wiledrand
> factor. What do they do and or not do in the case of
> TTP?
> On your TTP Primer, have you ever considered
> submitting it to a medical magazine? Heck, you
> probably know more about this disease than some of
> the
> finest doctors, and could probably teach them a
> thing
> or two.
> Hugs,
> Suz
> --- Karen <WiederTeufel@...> wrote:
> > Hi Phantom - The current opinion in the medical
> > community is
> > that "Yes" changes in female hormone levels or
> > balances may be part
> > of the problem. This includes things like
> pregnancy,
> > menopause, BCP's
> > and HRT's, and any other illness, condition or
> > medication that
> > affects the female hormones. Even though they
> > believe that the
> > primary culprit in many forms of TTP is the ADAMTS
> > 13 defect they are
> > also beginning to see that in some cases there
> seem
> > to be co-
> > triggering factors as well and the ADAMTS 13
> > aberration may be
> > dependent on other mechanisms in addition to the
> > enzyme/antibody
> > problem, and may have multiple or complex
> triggering
> > agents within a
> > single patient. They are even postulating on the
> > possibilty of
> > mulitple-antibodies each of which may prove to
> have
> > multiple
> > triggering patterns. (What a tangled web that is!)
> > Anyone who has had TTP where the cause is
> idiopathic
> > is at increased
> > risk of relapse, period. This is NOT to say that
> > everyone with an
> > idiopathic diagnosis of TTP WILL relapse, but
> until
> > they can further
> > narrow the triggering mechanism down to specific
> and
> > individual cases
> > this is the path that doctors (and patients) must
> > adhere to.
> > This does NOT mean that your particular trigger is
> > hormone-related,
> > or BCP-related, but it does have to be considered.
> > Unfortunately the
> > only way to know for sure right now is to try it
> and
> > see what
> > happens. :-) That is a risk vs gain assessment you
> > have to do for
> > yourself with your doctor's guidance.
> > As far as pregnancy is concerned I have some new
> > literature that I am
> > still working my way thru. That subject will be
> part
> > of the new TTP
> > Primer when (and Oh, Lord IF!) I ever get it
> > finished. (It has grown
> > quite a lot. LOL!) But the bottom line appears to
> be
> > the same as for
> > any other form of the disease. The risk is there
> and
> > the results are
> > not consistent within a patient group or even in a
> > single patient.
> > But the current assessment is that subsequent
> > pregnancies even in
> > patients whose inital TTP was apparetnly triggered
> > by pregnancy is
> > relatively low (somewhere in the range of 10%-25%)
> > Of course any
> > patient with a history of TTP is strongly advised
> to
> > obtain the care
> > of an Ob/Gyn specialist for high-risk pregnancy.
> > From my personal experience: My second episode was
> > within one week of
> > beginning a regimen of hormone replacement therapy
> > for what we
> > thought was peri-menopausal symptoms. Did it
> > actually trigger the
> > disease? I don't know. I was observing the onset
> > prodrome symptoms I
> > described in one of my previous messages for about
> 3
> > weeks prior to
> > that, so it's quite possible that the entire thing
> > was a huge
> > coincidence since I have had the same onset
> symptoms
> > in each
> > subsequent episode and there was no hormone change
> > (at least none
> > that were not natural for me) during any of the
> > others. Will I use
> > any form of oral hormones again? No. Because there
> > is a possibility
> > it was part of the problem for me.
> > Absolutely you should discuss these issues with
> your
> > doctor. No
> > matter what your decision is he needs to be part
> of
> > the process.
> > Love ya. Karen
> >
> >
> > --- In thrombocytopenia@yahoogroups.com,
> > "phantom_mermaid_82"
> > <phantom_mermaid_82@y...> wrote:
> > > Hi all! There has been something that has been
> on
> > my mind for
> > awhile now. When I was in the hospital my sister
> > brought me some
> > literature about TTP. It was pretty extensive and
> > one thing it
> > mentioned was that in some cases TTP was caused by
> > stuff that was
> > related to estrogen such as pregnancy or birth
> > control pills.
> > >IF the bc pills did not cause my first and so far
> > only case of TTP,
> > it would appear that estrogen is not one of my
> > triggers. HOWEVER, it
> > still concerns me. I still wonder what my chances
> > are of relapsing
> > into TTP if I ever become pregnant because
> although
> > bc pills make
> > your body think it's pregnant, I doubt they can
> > affect the body in
> > quite the same way. I also wonder if having a past
> > incidence of TTP
> > makes one more sensitive to triggers, and if it
> > would therefore be
> > more dangerous for me to take bc pills now than
> > before.
> >
> >
>
>
>
>      
>            
> __________________________________
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>
> ---------------------------------
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>
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>  
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Hiya Lisa,
I almost need a flow diagram or a cause and effect
diagram to see what each cell does. I am used to
looking at those to see what goes where and what each
product line does.
How ya feeling these days? My bronchitis is finally
gone. Yehaw! We had to put off my allergy testing
until the antibiotics were out of my system, so we
have to wait a little longer to find out what is
triggering my sinus infections. I know so far that the
pine pollen and oak pollen trigger it, but who knows
what else.
How's the treatments going? Did I read that you were
down to 1 per week? Are you back on the beast?
Let me know how youre doin.

Hugs,
Suz
--- Lisa Schmitz <catsgreen777@...> wrote:
> I still have a very hard time understanding it, too.
> I have asked my doctor about it and read about it,
> and I feel like I understand it, but then I go to
> explain it to someone else, and I realize I don't
> get it at all. I am a visual person so I think the
> problem is that I can't I picture what is going on
> with this disease.
>
> Sue B <suzangel@...> wrote:Hiya Karen,
> Ya know, since I have had TTP, I still cannot
> understand the role of ADAMTS 13 and the Von
> Wiledrand
> factor. What do they do and or not do in the case of
> TTP?
> On your TTP Primer, have you ever considered
> submitting it to a medical magazine? Heck, you
> probably know more about this disease than some of
> the
> finest doctors, and could probably teach them a
> thing
> or two.
> Hugs,
> Suz
> --- Karen <WiederTeufel@...> wrote:
> > Hi Phantom - The current opinion in the medical
> > community is
> > that "Yes" changes in female hormone levels or
> > balances may be part
> > of the problem. This includes things like
> pregnancy,
> > menopause, BCP's
> > and HRT's, and any other illness, condition or
> > medication that
> > affects the female hormones. Even though they
> > believe that the
> > primary culprit in many forms of TTP is the ADAMTS
> > 13 defect they are
> > also beginning to see that in some cases there
> seem
> > to be co-
> > triggering factors as well and the ADAMTS 13
> > aberration may be
> > dependent on other mechanisms in addition to the
> > enzyme/antibody
> > problem, and may have multiple or complex
> triggering
> > agents within a
> > single patient. They are even postulating on the
> > possibilty of
> > mulitple-antibodies each of which may prove to
> have
> > multiple
> > triggering patterns. (What a tangled web that is!)
> > Anyone who has had TTP where the cause is
> idiopathic
> > is at increased
> > risk of relapse, period. This is NOT to say that
> > everyone with an
> > idiopathic diagnosis of TTP WILL relapse, but
> until
> > they can further
> > narrow the triggering mechanism down to specific
> and
> > individual cases
> > this is the path that doctors (and patients) must
> > adhere to.
> > This does NOT mean that your particular trigger is
> > hormone-related,
> > or BCP-related, but it does have to be considered.
> > Unfortunately the
> > only way to know for sure right now is to try it
> and
> > see what
> > happens. :-) That is a risk vs gain assessment you
> > have to do for
> > yourself with your doctor's guidance.
> > As far as pregnancy is concerned I have some new
> > literature that I am
> > still working my way thru. That subject will be
> part
> > of the new TTP
> > Primer when (and Oh, Lord IF!) I ever get it
> > finished. (It has grown
> > quite a lot. LOL!) But the bottom line appears to
> be
> > the same as for
> > any other form of the disease. The risk is there
> and
> > the results are
> > not consistent within a patient group or even in a
> > single patient.
> > But the current assessment is that subsequent
> > pregnancies even in
> > patients whose inital TTP was apparetnly triggered
> > by pregnancy is
> > relatively low (somewhere in the range of 10%-25%)
> > Of course any
> > patient with a history of TTP is strongly advised
> to
> > obtain the care
> > of an Ob/Gyn specialist for high-risk pregnancy.
> > From my personal experience: My second episode was
> > within one week of
> > beginning a regimen of hormone replacement therapy
> > for what we
> > thought was peri-menopausal symptoms. Did it
> > actually trigger the
> > disease? I don't know. I was observing the onset
> > prodrome symptoms I
> > described in one of my previous messages for about
> 3
> > weeks prior to
> > that, so it's quite possible that the entire thing
> > was a huge
> > coincidence since I have had the same onset
> symptoms
> > in each
> > subsequent episode and there was no hormone change
> > (at least none
> > that were not natural for me) during any of the
> > others. Will I use
> > any form of oral hormones again? No. Because there
> > is a possibility
> > it was part of the problem for me.
> > Absolutely you should discuss these issues with
> your
> > doctor. No
> > matter what your decision is he needs to be part
> of
> > the process.
> > Love ya. Karen
> >
> >
> > --- In thrombocytopenia@yahoogroups.com,
> > "phantom_mermaid_82"
> > <phantom_mermaid_82@y...> wrote:
> > > Hi all! There has been something that has been
> on
> > my mind for
> > awhile now. When I was in the hospital my sister
> > brought me some
> > literature about TTP. It was pretty extensive and
> > one thing it
> > mentioned was that in some cases TTP was caused by
> > stuff that was
> > related to estrogen such as pregnancy or birth
> > control pills.
> > >IF the bc pills did not cause my first and so far
> > only case of TTP,
> > it would appear that estrogen is not one of my
> > triggers. HOWEVER, it
> > still concerns me. I still wonder what my chances
> > are of relapsing
> > into TTP if I ever become pregnant because
> although
> > bc pills make
> > your body think it's pregnant, I doubt they can
> > affect the body in
> > quite the same way. I also wonder if having a past
> > incidence of TTP
> > makes one more sensitive to triggers, and if it
> > would therefore be
> > more dangerous for me to take bc pills now than
> > before.
> >
> >
>
>
>
>
>
> __________________________________
> Do you Yahoo!?
> Win a $20,000 Career Makeover at Yahoo! HotJobs
> http://hotjobs.sweepstakes.yahoo.com/careermakeover
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/thrombocytopenia/
>
>    To unsubscribe from this group, send an email to:
> thrombocytopenia-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the
> Yahoo! Terms of Service.
>
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Win a $20,000 Career Makeover at Yahoo! HotJobs





__________________________________
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Hello Everyone! I hope you all are in good health today.  I am
writing to let all of you know that I am leaving this group. I have
no harsh feelings towards anyone here. I love you all.  I sat and
thought about it and if I am causing problems here then I should
leave because I am the outsider. I do not have TTP nor ITP. I am an
individual that has certain symptoms quite like TTP, but I have never
been diagnosed with this disease.  I have made quite a few friends
here and I will miss you all.  Thanks for all your prayers and kind
words.  Till we meet again... God Bless!

Love,
De'Vonda

I havent. But I have gotten 3 emails from Rosiegr that
all contained viruses.
--- catsgreen777 <catsgreen777@...> wrote:
> I have received 2 email notices today saying that I
> requested to
> unsubscribe to this group. Anyone else receive them,
> too?  I  hope
> someone didn't decide to kick me out of the group!
> :)
> -Lisa
>
>





__________________________________
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Win a $20,000 Career Makeover at Yahoo! HotJobs
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----- Original Message -----

From: Lisa Schmitz

To: thrombocytopenia@yahoogroups.com

Sent: Friday, April 30, 2004 11:04 AM

Subject: Re: [thrombocytopenia] Re: Pregnancy & Relapse--Suz

I still have a very hard time understanding it, too. I have asked my doctor about it and read about it, and I feel like I understand it, but then I go to explain it to someone else, and I realize I don't get it at all. I am a visual person so I think the problem is that I can't I picture what is going on with this disease.

Sue B <suzangel@...> wrote:

Hiya Karen,
Ya know, since I have had TTP, I still cannot
understand the role of ADAMTS 13 and the Von Wiledrand
factor. What do they do and or not do in the case of
TTP?
On your TTP Primer, have you ever considered
submitting it to a medical magazine? Heck, you
probably know more about this disease than some of the
finest doctors, and could probably teach them a thing
or two.
Hugs,
Suz
--- Karen <WiederTeufel@...> wrote:
> Hi Phantom - The current opinion in the medical
> community is
> that "Yes" changes in female hormone levels or
> balances may be part
> of the problem. This includes things like pregnancy,
> menopause, BCP's
> and HRT's, and any other illness, condition or
> medication that
> affects the female hormones. Even though they
> believe that the
> primary culprit in many forms of TTP is the ADAMTS
> 13 defect they are
> also beginning to see that in some cases there seem
> to be co-
> triggering factors as well and the ADAMTS 13
> aberration may be
> dependent on other mechanisms in addition to the
> enzyme/antibody
> problem, and may have multiple or complex triggering
> agents within a
> single patient. They are even postulating on the
> possibilty of
> mulitple-antibodies each of which may prove to have
> multiple
> triggering patterns. (What a tangled web that is!)
> Anyone who has had TTP where the cause is idiopathic
> is at increased
> risk of relapse, period. This is NOT to say that
> everyone with an
> idiopathic diagnosis of TTP WILL relapse, but until
> they can further
> narrow the triggering mechanism down to specific and
> individual cases
> this is the path that doctors (and patients) must
> adhere to.
> This does NOT mean that your particular trigger is
> hormone-related,
> or BCP-related, but it does have to be considered.
> Unfortunately the
> only way to know for sure right now is to try it and
> see what
> happens. :-) That is a risk vs gain assessment you
> have to do for
> yourself with your doctor's guidance.
> As far as pregnancy is concerned I have some new
> literature that I am
> still working my way thru. That subject will be part
> of the new TTP
> Primer when (and Oh, Lord IF!) I ever get it
> finished. (It has grown
> quite a lot. LOL!) But the bottom line appears to be
> the same as for
> any other form of the disease. The risk is there and
> the results are
> not consistent within a patient group or even in a
> single patient.
> But the current assessment is that subsequent
> pregnancies even in
> patients whose inital TTP was apparetnly triggered
> by pregnancy is
> relatively low (somewhere in the range of 10%-25%)
> Of course any
> patient with a history of TTP is strongly advised to
> obtain the care
> of an Ob/Gyn specialist for high-risk pregnancy.
> From my personal experience: My second episode was
> within one week of
> beginning a regimen of hormone replacement therapy
> for what we
> thought was peri-menopausal symptoms. Did it
> actually trigger the
> disease? I don't know. I was observing the onset
> prodrome symptoms I
> described in one of my previous messages for about 3
> weeks prior to
> that, so it's quite possible that the entire thing
> was a huge
> coincidence since I have had the same onset symptoms
> in each
> subsequent episode and there was no hormone change
> (at least none
> that were not natural for me) during any of the
> others. Will I use
> any form of oral hormones again? No. Because there
> is a possibility
> it was part of the problem for me.
> Absolutely you should discuss these issues with your
> doctor. No
> matter what your decision is he needs to be part of
> the process.
> Love ya. Karen
>
>
> --- In thrombocytopenia@yahoogroups.com,
> "phantom_mermaid_82"
> <phantom_mermaid_82@y...> wrote:
> > Hi all! There has been something that has been on
> my mind for
> awhile now. When I was in the hospital my sister
> brought me some
> literature about TTP. It was pretty extensive and
> one thing it
> mentioned was that in some cases TTP was caused by
> stuff that was
> related to estrogen such as pregnancy or birth
> control pills.
> >IF the bc pills did not cause my first and so far
> only case of TTP,
> it would appear that estrogen is not one of my
> triggers. HOWEVER, it
> still concerns me. I still wonder what my chances
> are of relapsing
> into TTP if I ever become pregnant because although
> bc pills make
> your body think it's pregnant, I doubt they can
> affect the body in
> quite the same way. I also wonder if having a past
> incidence of TTP
> makes one more sensitive to triggers, and if it
> would therefore be
> more dangerous for me to take bc pills now than
> before.
>
>



     
           
__________________________________
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---

Do you Yahoo!?
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De'Vonda,

Why leave?  You have added to the group and if a few don't like it then this is
their issue.  I
for one don't bother to read each and every message for not all pertain to me
and I don't
have time

Stay for you will be missed.

justme

--- In thrombocytopenia@yahoogroups.com, "Mrs. Williams-Lasker" <ljadmw@y...>
wrote:
> Hello Everyone! I hope you all are in good health today.  I am
> writing to let all of you know that I am leaving this group. I have
> no harsh feelings towards anyone here. I love you all.  I sat and
> thought about it and if I am causing problems here then I should
> leave because I am the outsider. I do not have TTP nor ITP. I am an
> individual that has certain symptoms quite like TTP, but I have never
> been diagnosed with this disease.  I have made quite a few friends
> here and I will miss you all.  Thanks for all your prayers and kind
> words.  Till we meet again... God Bless!
>
> Love,
> De'Vonda

Kendalyn Wilson  

Kendi,

You poor thing! I also developed TTP from pregnancy complications.  I had
developed preclampsia at 37 weeks and was induced.  I have had a history with
ITP so at first my dr.s thought it was ITP again.  When I didn't respond to the
usual ITP treatment that had worked before and my LDH shot up to over 1600 they
began phoresis.  My platelets were also at 4K.  I had phoresis for 11 days and,
knock on wood, I've been good ever since.  Do you plan on having more children? 
What was your dr's advice?  Have you ever relapsed or do you believe it was the
pregnancy that triggered your TTP?

Hugs~
Amy
>
> From: Kendi Wilson <kendalynd@...>
> Date: 2004/04/30 Fri PM 01:27:12 EDT
> To: thrombocytopenia@yahoogroups.com
> Subject: Re: [thrombocytopenia] New Member
>
> Thank you Lisa...I must say that it amazes me to see that all of you are still
having all these problems.  I guess I was just one of the lucky ones.  I'll just
go ahead and tell my story just in case you are curious.  I was 20 at the time
that I was diagnosed.  I was pregnant with my son and had very bad toxemia.  I
was put on mandatory bed rest at 23 weeks.  At 33 weeks I delivered my son due
to an abruption in my placenta.  I hemoraged and they actually lost me on the
table and resusitated me.  Of course you have the catheter in you and they were
feeding me full of antibiotics and all that good stuff.  Well in 24 hours they
had given me 3000 cc's of fluids and I only had an output of 25 cc's in urine. 
That is when they discovered that there was a problem.  I went through another
surgery to see if nothing was screwed up because of the C-section.  Nothing was
messed up.  They then took my blood to see if there was anything there and that
is when they discovered that my platelette
>  count was down to 4K.  They put the port in my groin and imediately started
me on the plasma exchanges and kidney dialysis.  The port in my groin eventually
failed and that is when they put the one in my sholder going up to my neck.  I
was in the hospital for 12 days.  I ended up having to have 2 more plasma
exchanges after I left and 2 more dialysis treatments.  By then my plateletts
were up to over 150K.  I know that I am one one the more rare ones because mine
was caused by pregnancy.
>
> There is another girl in Oklahoma who has ended up relapsing 4 times before
they ended up taking out her spleen and seemed to do the trick for her.
>
> I hope all of you are well and continue to do well.  Talk to you soon.
>
> Kendi
>
>
>
> Kendalyn Wilson
>
>
> ---------------------------------
> Do you Yahoo!?
> Win a $20,000 Career Makeover at Yahoo! HotJobs
>

Kendalyn Wilson  

Hello Everyone! I hope you all are in good health today.  I am
writing to let all of you know that I am leaving this group. I have
no harsh feelings towards anyone here. I love you all.  I sat and
thought about it and if I am causing problems here then I should
leave because I am the outsider. I do not have TTP nor ITP. I am an
individual that has certain symptoms quite like TTP, but I have never
been diagnosed with this disease.  I have made quite a few friends
here and I will miss you all.  Thanks for all your prayers and kind
words.  Till we meet again... God Bless!

Love,
De'Vonda

Hi Megan and all - I just wanted to post a quick update as Megan has
asked my status. The first try with Imuran was unsuccessful. I
developed what appeared to be a dose toxicity and we took a drug
holiday for 10 days. Since it is the least nasty drug available I
wasn't ready to just throw it out and move on until we were sure it
wasn't going to work, so Dr. A and I decided to try a rechallenge
and/or a dose modification schedule to see if we could continue.
We tried last night with a half dose of 25 mg just to check if the
toxic reaction was an accumaltion effect or possibly a reation to the
drug itself. That didn't go well. On a positive note I can now cancel
my appointment for that high colonic, LOL! Everything between my
inlet and outlet is cleaned out and I feel like a new woman, LOL!

So looks like Imuran is not going to be my silver bullet. There are
two metabolite drivatives of Imuran(what it is broken down to in the
digestive process) available as separate medications: Thioguanine and
Mercaptopurine. Both have immune suppressive qualities. It's possible
that one of them may be the culprit in the digestive upset, and I can
tolerate the other. So the plan is to try them and see what happens.

If that fails then it looks like we will just hold what we got. She
feels like me that my disease pattern is not unstable enough yet to
warrant using any of the chemos or Rituxan, and there is nothing to
indicate that exposing me to them would be a benefit in remission
anyway. Cyclosporine (SandImmune)is only effective if you use it with
prednisone so that one is out for me. Cyclophosphamide (Cytoxan)
presents a risk for me with my history of ongoing hematuria, so it's
also out. Mycophenolate mofetil (CellCept) has not been seen to be
effective at all in TTP so we probably won't even try it.

So I guess we'll just watch and wait and hope for the best. If I
relapse, we'll decide what path to go based on my recovery
performance.

Everyone hang in there. Big hugs and welcomes to our newest members.
I'll get caught up with everyone as soon as I get this Group Support
project finished. In the meantime you know that my mailbox is always
open.

Just so you know - I have been working offline with the new lady
Melissa <HKYPCK> whose mother was in such bad shape. She has had a
splenectomy, and is beginning to come around from the combination of
surgery, Rituxan and plasma. Still in rough shape from all she has
been thru, but improving each day. Her platelets are at 130K and they
have removed the breathing tube and feeding tubes, and begun a liquid
diet. She is able to tolerate short conversations and seems to be
mostly alert and aware, with only a few memory deficits that may take
some time to clear. So continued prayers are requested by the family
and thanks to all for your support. Love ya. Karen

Kendalyn Wilson  

Dear Concerned: We are all unique to begin with and what triggers a
relapse (whether it be a major or minor episode), your labs and your
doctors will help you discern the situation. If you're that
knowledgable about your body; it's every nuance, you'll know when to
see your doctor. Never wait. Outside of that, everything in your life
and world offer clues. Understand it all, the best way you can, but
leave the worry, and your doubts with your doctors. Always feel free
to load them down with your concerns, that's their job. Your job is
to stay positive, be courageous, and believe you're on the mend one
day at a time. The steadier your step today, the easier it'll be to
cross tomorrows bridge.
With you all the way.
Christine

Hi Megan and all - I just wanted to post a quick update as Megan has
asked my status. The first try with Imuran was unsuccessful. I
developed what appeared to be a dose toxicity and we took a drug
holiday for 10 days. Since it is the least nasty drug available I
wasn't ready to just throw it out and move on until we were sure it
wasn't going to work, so Dr. A and I decided to try a rechallenge
and/or a dose modification schedule to see if we could continue.
We tried last night with a half dose of 25 mg just to check if the
toxic reaction was an accumaltion effect or possibly a reation to the
drug itself. That didn't go well. On a positive note I can now cancel
my appointment for that high colonic, LOL! Everything between my
inlet and outlet is cleaned out and I feel like a new woman, LOL!

So looks like Imuran is not going to be my silver bullet. There are
two metabolite drivatives of Imuran(what it is broken down to in the
digestive process) available as separate medications: Thioguanine and
Mercaptopurine. Both have immune suppressive qualities. It's possible
that one of them may be the culprit in the digestive upset, and I can
tolerate the other. So the plan is to try them and see what happens.

If that fails then it looks like we will just hold what we got. She
feels like me that my disease pattern is not unstable enough yet to
warrant using any of the chemos or Rituxan, and there is nothing to
indicate that exposing me to them would be a benefit in remission
anyway. Cyclosporine (SandImmune)is only effective if you use it with
prednisone so that one is out for me. Cyclophosphamide (Cytoxan)
presents a risk for me with my history of ongoing hematuria, so it's
also out. Mycophenolate mofetil (CellCept) has not been seen to be
effective at all in TTP so we probably won't even try it.

So I guess we'll just watch and wait and hope for the best. If I
relapse, we'll decide what path to go based on my recovery
performance.

Everyone hang in there. Big hugs and welcomes to our newest members.
I'll get caught up with everyone as soon as I get this Group Support
project finished. In the meantime you know that my mailbox is always
open.

Just so you know - I have been working offline with the new lady
Melissa <HKYPCK> whose mother was in such bad shape. She has had a
splenectomy, and is beginning to come around from the combination of
surgery, Rituxan and plasma. Still in rough shape from all she has
been thru, but improving each day. Her platelets are at 130K and they
have removed the breathing tube and feeding tubes, and begun a liquid
diet. She is able to tolerate short conversations and seems to be
mostly alert and aware, with only a few memory deficits that may take
some time to clear. So continued prayers are requested by the family
and thanks to all for your support. Love ya. Karen