tag:blogger.com,1999:blog-26832792801334363572024-03-05T21:14:12.145+08:00Living with Marfan's SyndromeI am a Filipina college student and I have Marfan's Syndrome. This blog is intended to connect with and to provide information and support to others with Marfan's, especially to other Pinoys.PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-2683279280133436357.post-33742016100831242382018-02-15T11:54:00.003+08:002018-02-17T10:37:07.785+08:00Mini Conference @ Stanford University in California<div class="MsoHeader" style="text-align: center;">
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<span style="font-family: arial, sans-serif; font-size: 14pt;">Last February 03, 2018 I joined a Marfan Volunteered Planning
Meeting at Stanford University here in California. This event was in
preparation for their up-coming National Marfan Conference on July 12 – 15,
2018</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;">That experience was really wonderful, I got the chance to meet
again other people with marfan syndrome, (even had photos with some of them).
During that meeting, they mentioned the possible topics that will be discuss
during the upcoming Conference and at the same time they encourage people to do
volunteer during the event. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;">Their possible topics during this conference are the
following:<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt; line-height: 107%;">(targeting
medical issues/led by professionals)</span><span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Osteoporosis</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Feet</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Aortic disease</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Pain management</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Gastro specialist</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Eyes (at least two maybe 3 sessions)</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Back</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Related issues (Loeyes-Dietz
and “other related”)</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Feet</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Gyn focused on women’s issues</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Ob focused on Marf pregnancy</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Genetics/research</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Dural ectasia/CSF leaks/spinal
headaches</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt;">Headaches</span><span style="font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;">And other topics is about how family members cope with
Marfan Syndrome in their family, such as:<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Young kids parent
support</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Living with
Marfans/inspirational</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Finance</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Insurance</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Sexuality</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Meditation/yoga</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Being a patient
advocate</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Unaffected
spouse/family member support</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Support group moms</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Support group dads</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 13.5pt;">Heart surgery from
“both sides of the bed”</span><span style="color: #222222; font-family: "arial" , sans-serif; font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 13.5pt; line-height: 107%;">Talking to your
doc about Marfans<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;">If any of you has inquiry wither covered in the topics
mentioned above or not, I encourage you to send me your inquiry so that I can
bring it up during this conference. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;">But, as always, I encourage everyone who has Marfan
Syndrome to be an expert with your own condition, by visiting the National
Marfan Foundation website at <a href="https://www.marfan.org/">https://www.marfan.org/</a>
<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;">As of the moment I'm still here in Vallejo, California for vacation, I'll be going back to the Philippines on April and plan to come back by June. You can simply reach me through my following email add: at <a href="mailto:precypiape@yahoo.com">precypiape@yahoo.com</a> or in my <a href="mailto:precypinoy@gmail.com">precypinoy@gmail.com</a> and you can also contact me in my Phil. Cellphone Number 09167103383 or in<o:p></o:p></span><span style="font-family: "arial" , sans-serif; font-size: 14pt; text-align: center;">my US Number 707 334 3939 </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6jrFn3sr-gme6yHfwlODwYZpD6TBCDaDUeuZJRM7FJMXNXXBJlWoa1Y4xceUPtqUEcmHrCo8b_586YVYyPnoqCLr9p6aYr-zUFR3P6MKSvBOeiuU_Xs8RSWQkjLKUs56n5DAsOE3i13x6/s1600/20180203_132508.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6jrFn3sr-gme6yHfwlODwYZpD6TBCDaDUeuZJRM7FJMXNXXBJlWoa1Y4xceUPtqUEcmHrCo8b_586YVYyPnoqCLr9p6aYr-zUFR3P6MKSvBOeiuU_Xs8RSWQkjLKUs56n5DAsOE3i13x6/s320/20180203_132508.jpg" width="320" /></a></div>
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Me and My Uncle </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5gIMaakcastk1KaCyCGX-UQajJey2WWK4r4Sa63fvF473AaNC2goAi9sFxgxKwRAy0wWtQsFcWlnsY63LMpwujlBzaUn_0mhYZf_ZV4pqEUmJuP0b03PhgfY7cX-NX9P0u27FUzuWwPgO/s1600/20180203_154438.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5gIMaakcastk1KaCyCGX-UQajJey2WWK4r4Sa63fvF473AaNC2goAi9sFxgxKwRAy0wWtQsFcWlnsY63LMpwujlBzaUn_0mhYZf_ZV4pqEUmJuP0b03PhgfY7cX-NX9P0u27FUzuWwPgO/s320/20180203_154438.jpg" width="240" /></a> </div>
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<span style="font-family: "arial" , sans-serif; font-size: 14.0pt; line-height: 107%;"><o:p> One of the coordinator of this event, and also has Marfan Syndrome </o:p></span></div>
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PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com1tag:blogger.com,1999:blog-2683279280133436357.post-38842268282226058952016-01-09T15:29:00.001+08:002016-01-09T15:29:01.994+08:00<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Abdominal Surgery<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">I suppose the
title of this should be “Surgery for someone with artificial heart valves who
is taking the blood-thinner warfarin,” but that is a little long, even though
it is more accurate. As you read this,
remember that I am a patient, not a doctor.
This is my experience, as best I can explain, and may not be the same as
others in a similar situation might experience.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">A few months
ago I was diagnosed with endometriosis, a fairly common affliction of younger
women best described in this article: </span><a href="https://jeanhailes.org.au/health-a-z/endometriosis/symptoms-causes"><span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">https://jeanhailes.org.au/health-a-z/endometriosis/symptoms-causes</span></a><span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;"><o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Although the
affliction is common and the surgery to remove the cysts is fairly simple and
routine, it became more complicated due to my artificial heart valves and the
warfarin all artificial heart valve recipients must take to thin the blood to
prevent clots forming on the valves.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Warfarin
patients must be weaned off the warfarin for several days prior to surgery to
prevent excessive bleeding. So I took my
last warfarin Saturday evening and entered the hospital Tuesday (Dec. 01 2015) morning to prepare for surgery on Friday (Dec
04, 2015). Tuesday, Wednesday, and
Thursday I was given an injectable blood-thinner which has a more predictable
half-life and is more easily controlled than warfarin. About 24-hours after surgery, the blood
thinners were restarted.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">The other
complication, also due to artificial valves, is the risk of bacterial infection
as such infections can settle in the area of the artificial valve with
life-threatening results. To deal with
this, a powerful antibiotic was started through an IV drip Thursday, the day
before the surgery, and was continued for seven days. So, even though I was up and moving around
Tuesday, I had to stay in the hospital another few days.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Besides the
antibiotic, the doctors wanted close post-op monitoring so I had a day or so in
the ICU right after the surgery.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">The actual
surgery required a team of doctors: The
ob-gyn doctor/surgeon, her assistant, a stand-by surgeon in case it became
required to remove the whole ovary and the appendix, the cardiologist, and, of
course, the anesthesiologist, who determined general anesthesia was required
instead of the customary spinal as a
spinal has risks specific to anyone taking a blood-thinner.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Everything
worked out OK; I am up and around with a new scar (I’m proud of my scars! They show that I’m tough – and also that I am
lucky. Not so many years ago, open-heart
surgery was not available and Marfan’s Syndrome was not well-understood.) But there are some lessons to be learned.<a href="https://www.blogger.com/null" name="_GoBack"></a><o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">One is that,
for the Marfan patient, everything is more complicated and you just have to
accept it and deal with it. (One of the
ways I deal with it is by publishing this blog; one of the ways YOU are dealing
with it is by READING this blog!)<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Another lesson
is that everything is more expensive:
your daily meds, routine visits to the cardiologist, prescription eyewear,
and, as this story details, hospitalizations, especially those as a result of
surgery.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">If you have
Marfan’s, it would be very easy to become despondent and discouraged – please
do not. Many have tried to explain why
God allows bad things to happen to good people – I won’t try. But I will say that I believe God has both me
and you here on Earth for a purpose. I
will embrace the life God gives me, live according to how I believe He wants,
and wait for His plans to unfold.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">If you ever
want to talk, call me.<o:p></o:p></span></div>
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<span style="font-size: 16.0pt; mso-bidi-font-size: 11.0pt;">Precy<o:p></o:p></span></div>
PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com0tag:blogger.com,1999:blog-2683279280133436357.post-16195217132868697452015-09-18T07:19:00.000+08:002015-09-18T07:19:32.695+08:00My Birthday!<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">September 17,
2015 (My Birthday!!!)<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">I guess that I
am not a great Blogger in that I do not post as often as I should…but I am REAL
GOOD at responding to readers who read this blog and are interested in learning
more about Marfan’s Syndrome!<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">Over the last
year I have been in touch with Jeffery, Rose, Sharmaine, and John who have all been
happy to find they were not alone in the world and were glad to compare notes
with others with Marfan’s. Rose, a
college professor, even visited us here in CDO and each of you has an
invitation, but maybe not all at the same time! Here is a photo of Rose and myself:</span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">The most
common feature of Marfan’s that we seem to share is the problem of dislocated
lenses. The on-line research my Uncle Joe
did when I was first diagnosed indicated that the best option was to get the
lenses removed and wear tri-focal glasses.
Replacing the lens, which is common for “normal,” non-Marfan eyes, was
NOT RECOMMENDED for me because the connective tissue which failed to hold the
original lenses in place would almost certainly fail to hold the replacement
artificial lenses in place. Seems like a
“no-brainer,” but we hear of very good eye docs who may not be quite as
familiar with Marfan eyes as they are with regular eyes recommending
replacement lenses. Suggestion: Do your homework. This is the age of the internet, so use it! Learn all you can about your body and how
Marfan’s affects you, then filter what your docs say with what you have
researched and discuss EVERYTHING!<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">For everyone,
please remember that The Marfan Foundation (http://www.marfan.org/) is the very
best source of information about Marfan’s.
Everything else, including what I post about my own experiences, is
anecdotal and may not be universally true.<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">I am also
occasionally approached by students who want to present Marfan’s as a case
study for school, and this is really great!
It helps them with a first-person interview and it introduces Marfan’s
to a lot of bright, young students who might otherwise only see a sentence or
two about it in a textbook. We must not
hide our condition; we must not live in a box!
The more people who know about and understand Marfan’s, the better for
all of us! So students – keep contacting
me!<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">Do you want to
talk with others with Marfan’s? Check out the Marfan Foundation’s On-Line
Community at </span><a href="http://www.marfan.org/get-involved/community/online-community"><span style="color: windowtext; font-size: 18.0pt; mso-bidi-font-size: 11.0pt; text-decoration: none; text-underline: none;">http://www.marfan.org/get-involved/community/online-community</span></a><span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">. You can chat, follow on Facebook, or follow
the forums. Remember, <b><i>YOU
ARE NOT ALONE</i></b>! But you do need to reach out. Very seldom will someone walk up to you and
say, “Excuse me, but are you familiar with Marfan’s Syndrome?”<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">(Actually, I
HAVE done that! I saw Rose in a local
mall, approached her with my little speech, and she turned around and her eyes
got big and she said, “You’re the girl from the blog!” Serendipity!)<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">Well, I have
to close now. I have to go to Savemore,
buy my present and cake, come home, wrap the present, make fruit salad, and get
ready for the surprise party my family is going to have for me this afternoon! </span><span style="font-family: Wingdings; font-size: 18.0pt; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-bidi-font-size: 11.0pt; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span><span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;"><o:p></o:p></span></div>
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<a href="https://www.blogger.com/null" name="_GoBack"></a><span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;"> “When you fall off a cliff, one
of two things will happen. Either God is
going to catch you or He’s going to teach you to fly!”<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; mso-bidi-font-size: 11.0pt;">Precy<o:p></o:p></span></div>
PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com3tag:blogger.com,1999:blog-2683279280133436357.post-58299526903217237362011-09-20T13:29:00.000+08:002011-09-20T13:32:38.892+08:00Refreshing My MemoryIt has been three years or so since I had my eye and heart surgeries. A lot has happened in those four years, and my life direction has changed. <br /><br />When I was in elementary and high school, before I had my eye and heart surgeries and before I even knew I had Marfan’s Syndrome, I noticed that I easily got tired playing with my cousins and in some of my activities at school. I remember my struggles in high school military training – although I accomplished the training, sometimes I felt like I was climbing Mount Everest! My vision was also bad, but, because we lived in the countryside and had very little medical treatment available, I just had second-hand glasses. <br /><br />Then I went to the city for college, and during my first year we discovered I had Marfan’s. My eyesight had became so bad that my aunt and uncle asked me to find the best eye doctor available and get prescription glasses. We were all startled and confused when the eye doctor said I had “dislocated lenses,” but my uncle went to his computer right away and did some research. <br /><br />He realized that the dislocated lenses and my tall, thin build and long arms and fingers indicated I had Marfan’s.The website of the US National Marfan Foundation taught us a lot, and my uncle had me go to a heart doctor.This led to my heart surgery and a wonderful improvement in my strength and stamina. <br /><br />I still have to be careful and avoid contact sports, but I was able to complete my college PE courses. I explained my situation to the instructors, and they were able to accommodate me in the contact sports by having me do special activities such as scoring. But I have had some great adventures with my family such as snorkeling, caving, hiking, and white-water rafting, something CDO is famous for! We were able to obtain a heart-rate monitoring wristwatch so I can always check my heart rate, especially during hiking.<br /><br />So now I asked myself, “What more could I ask for?” Yeah, I have the condition known as Marfan’s Syndrome, but I can still enjoy the wonders of the world around me! For me, I think it is just a matter of choosing whether I want to be stuck in a life worrying about my condition or facing my life with a happy heart, accepting both the things I can do as well as the things I cannot do. Thinking about it, we each have to make the same choice in life!<br /><br />Those with Marfan’s (sometimes we call ourselves “Marfs”) usually look different from those around us. Marfs are usually taller and leaner, and often have long arms, legs, and fingers. But being one-of-a-kind is not easy. People sometimes judge us by our physical differences rather than who or what we really are. But because I am the type of person who is always determined to face whatever challenges come my way, I always start each day with great passion, doing the best I can and not quitting. I have faith in God and I believe He has a better plan for me than I have for myself.<br /><br />I believe life is wonderful despite all the down parts and, as the years have passed, God has shown me, one step at a time, the reason He chose me to have this condition instead of my neighbor. I believe He knows me better than I know myself, and He has trusted me to be the strongest among others, if not physically, then spiritually. <br /><br />I believe we each must enjoy every day God gives us. As Master Oogway explains in the movie Kung Fu Panda:<br /><br />“Yesterday is History,<br />Tomorrow is a Mystery,<br />But Today is a Gift.<br />That is why it is called the Present!”PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com27tag:blogger.com,1999:blog-2683279280133436357.post-7246793431671546712011-09-14T01:25:00.001+08:002011-09-14T01:39:49.544+08:00Finally I'm BackHi everyone if you happen to bump into my blog, it’s been a long… long… time already that I haven’t able to post, for some reason. <br /><br />Years past so quick but still here I’am facing the world despite of my situation. Having this Marfan Syndrom is not easy, but in my case I’m so thankful to GOD, for giving me a second chance in life. <br /><br />Please feel free to post any questions or visit me in my facebook, or email me and I’ll be glad to share my extra ordinary experience in life in dealing with Marfan Syndrom. Add or visits me in the following website.<br /><br />Email & Facebook: cindy_linker17@sbcglobal.netPrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com9tag:blogger.com,1999:blog-2683279280133436357.post-12303187626718946282009-12-06T13:55:00.002+08:002009-12-06T14:01:12.875+08:00God Rides a Jeepney<strong>Last Sunday, after my cousin Marilyn and I went to church, we went to Gaisano Mall to buy my meds and some stuff for here at home. After we finished at the mall, we walked to the park near Gaisano to wait for a Bayabas jeepney. <br /><br />Before too long, here comes a Bayabas jeep, and the helper was shouting “Bayabas,” and we saw this old man, with very ragged clothing and no slippers, trying to ask favor from the jeepney helper, that he would like a free ride to Bayabas. But the jeepney helper refused the guy, and the same happened with the second and third Bayabas jeepneys. They never let him ride. To me, he was not like the others, he just seemed to be a traveler.<br /><br />Marilyn and I just observed the guy, letting all our jeeps pass by. We waited to see if that old man could ride. We talked to a lady, a vendor, and even she felt sorry for the old man, because he had been standing there for a long time already. All the drivers refused to give him a ride. I could see that the vendor was also concerned for the old guy. Inside my heart, I just had some strange feeling to help a person who needed a small thing. Marilyn and I talked about it and decided to pay the fare for the old man.<br /><br />Then I had a strange thought and shared it with the lady vendor and with Marilyn. What if, just only what if, that guy was God, and He was just asking for a very simple thing, not too much. And He was seeing that people cannot open their hearts, even for doing a very simple thing for some other person. The lady vendor agreed with what I said.<br /><br />So I paid for his fare. Seven pisos won’t hurt somebody's pocket!<br /><br /><em>Some believe there are angels among us, messengers from God. Others believe that God, once in a while, gives us each the chance to be His angel and it is up to us to do His will, to do what He wants us to do. - Precy</em><br /></strong>PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com2tag:blogger.com,1999:blog-2683279280133436357.post-57698445487459684602009-11-29T22:53:00.004+08:002009-11-29T23:16:23.381+08:00Memories<strong>Last Saturday I took a day off from studying to give my mom a break and work for her at my Ate Carol’s beauty parlor. Last year, Ate Carol (“Ate” is pronounced like “Auntie” if you drop the “un” and is used as a title of respect to any female older than you) slipped and fell at a store near her home in California. She got a little insurance money and used it to build a beauty parlor here in Cagayan. I don’t think she got enough money – her back is still very painful – but the parlor is wonderful! We all work to keep it perfectly neat and clean, and business is picking up after a slow summer when people were all staying home due to the flu.<br /><br />Back in California last summer, Ate collected outgrown clothes from her kids and friends, bought more from the goodwill store, and shipped them here. Two weeks ago, we started selling them from a booth outside the parlor. Business is good, and the selling of the clothes is what I was doing.<br /><br />As in most Asian countries, here in the Philippines there is a strong tradition of individuals having their own “stores,” often no more than a pushcart or a stall at a local market or a booth along a street or road. When she was only in her teens, younger than I am now, Ate had her own little store, selling soda and cigarettes and gasoline in old soda bottles. Her dream is for our store to provide a living for us.<br /><br />Tending her store reminded me of a wonderful time of my youth, when I would help my mom sell vegetables from her booth in the public market of Malaybalay, in Bukidnon. We would sleep at night under the table which held our vegetables. The heat was torrid, and we would hope it wouldn’t rain. Early in the morning, the farmers would come down from the mountains to sell their produce to the vendors, then they would buy what they needed and head back to their farms.<br /><br />The local people would shop during the day, and I would always look out for “Americans” (every non-Asian was an “American”) and I would chase them down and practice my English on them. The few years my mom had that store were some of the most memorable of my life. There was joy in my heart that I cannot express! Good memories!<br /><br />A lot of my childhood was memorable, but not in a good way. My parents were always poor. About the time I was born, my mom was a maid. She cleaned, did the laundry and ironed, cooked, and cleaned the dishes. Her boss wouldn’t let her eat the leftover food; there was “special” food for the maid! When I was born, the boss let my parents clean out the goat-pen and live there. Later, when my mom was having some success with her store, that lady would often come to my mom and ask for “loans!”<br /><br />My mom was smart and had a six-grade education – pretty good for the central highlands of Mindanao – but she was always hindered and in pain from her bent spine, which we now know was the result of Marfan’s Syndrome. My father had no formal education, no real skills other than catching cobras and other snakes for resale, and he was afflicted with a condition far, far worse than Marfan’s – alcoholism. Whenever he had any money, or whenever he could get drinks from his friends, he would get drunk – vicious, mean drunk. Then he’d grab a bolo and everyone would get out of his way. My Ate in California and her husband, my Uncle Joe, helped us financially and also sent us boxes of gifts – wonderful gifts! Books, clothes, tools – eventually, my father would sell or pawn everything and buy alcohol.<br /><br />Almost every holiday or fiesta I can remember, my dad would get drunk, and my mom and I would end up running into the trees to spend the night. The last time he attacked me was the summer after my first year at college. He ran at me with his bolo raised, screaming that if he killed me, Ate wouldn’t waste her money on me and my education but would just give it to him. My cousin saw the attack and pushed me out of the way but knocked out my breath. I never went back to our house.<br /></strong>PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com0tag:blogger.com,1999:blog-2683279280133436357.post-33531902556544466022009-11-16T20:51:00.005+08:002009-11-16T21:03:19.261+08:00A Change of Direction<strong>A Change of Direction<br /><br />A recent acquaintance, also a Marf (In fact, she’s the one who taught me that word – it’s a lot easier than saying “someone who has Marfan’s!), said “This is a great time to have Marfan’s!” I’m still thinking about that.<br /><br />I know she meant that medical science has advanced so much over the last 10 years that, with proper diagnosis and treatment, and moderate restrictions to their life-style and activities, a Marf can enjoy normal life expectancy.<br /><br />Two weeks ago I was taught a hard lesson about those “moderate restrictions” to life-style and activities.<br /><br />Until I was diagnosed with Marfan’s, I had been fairly active. I had worked in the fields, chopping weeds with a bolo (No big deal – everyone I knew cut weeds with a bolo. It’s the way farmers live in the Philippines!) and played with my classmates. Although I was thin, I was a lot taller than the other kids and I had a lot of leverage with my long arms.<br /><br />After learning about Marfan’s through the US National Marfan Foundation (http://www.marfan.org/), I had to restrict my activities. The rule is: No contact sports and no sports where I would be hit in the chest or head. So I can shoot baskets, but my cousins can’t pass to me. In volleyball, instead of spiking, I am the scorer, watching my short little classmates scramble around after a ball that sometimes seems bigger than they are. And I remember the time my uncle from California was playing “catch” with my cousins, throwing a tennis ball back and forth. I was hurrying for school, and I knew he wouldn’t let anyone throw to me even if I had time to play, so I was a little angry when he had one of my cousins hand me the ball and told me to throw it to him. Books in one hand, uniform skirt flying, I threw that ball at him just like I had thrown rocks at my cousin and other pests when I was little. He managed to catch it, but I saw his eyes get big! Later, he told me he wished I could play, because I could really throw.<br /><br />But these restrictions on activity are just nuisances compared to what happened at school two weeks ago.<br /><br />I had been planning on a career as a nurse ever since I was 14 or 15. I liked the idea of helping people, it seemed to be a way to someday earn a good living for myself and my family, and I really liked the “blood-and-broken-bones” part! I am the one who treats every accident in our 3-family household, I am the one who takes the injured to Madonna Hospital (The ER staff know me by name!) and I am the one who administers the meds. I like the clinical work so much that my uncle once said that I would make a good “cut-man” for Manny Pacquiao!<br /> <br />But, 2 weeks ago, the direction of my life changed. The Dean of the School of Nursing told me I couldn’t continue due to my Marfan’s. The Dean felt I wasn’t strong enough, and that also it was too dangerous to let me be exposed to the various diseases walking into the ER. She made the point that, although I’d really like to work in the post-natal unit, student nurses train in every department, including those requiring heavy lifting and exposure to infectious diseases. She agreed to let me come back the next day with counter-arguments before she made her final decision. At the final meeting I argued that I was at least as strong as some of my smaller classmates, and there was nothing wrong with my immune system, but she wouldn’t change her mind. So now I am a Psych major.<br /><br />My mother was actually relieved. So was my cardiologist. My uncle was supportive. He wrote, “Dear Precy, I know this afternoon and tomorrow, when you are meeting with the Dean who will decide your future, that you will be worried and be under stress. I ask you to not be worried. You and I have each done our best...there is no more we can do, other than you speaking in the meeting tomorrow. We must believe that the decision tomorrow is God's decision, not the Dean’s. We may think that nursing is God's plan for you, and we may wish that it is God's plan for you, but only God knows His actual plan.<br /><br />“If God closes this door, He will open another door, and I will proudly walk with you through that other door!<br /><br />“So, when you pray tonight, perhaps do not ask God to allow you to continue nursing. Instead, ask God to have the Dean make an honest evaluation and make her decision according to God's will, and give us all the strength to accept that decision and to always seek God's path in our lives.<br /><br />“Know that we are by your side forever. Love, Your very proud Uncle Joe”<br /><br />Actually, Psych might be a fun major. I liked the one course I took my first year, and my uncle pointed out that I have enough abnormal behavior in my own family for a PhD thesis. That would be funny if it weren’t so true. I have to close this and study now. We have to prepare for a “Patient/Therapist” exercise in Abnormal Psych class. I get to be a “patient.” Easy. All I have to do is figure out which of my weird relatives to act like!</strong>PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com0tag:blogger.com,1999:blog-2683279280133436357.post-58526642947442196622009-11-08T00:07:00.001+08:002009-11-12T23:24:58.276+08:00Learn about Marfan's Syndrome<strong><span id="SPELLING_ERROR_0" class="blsp-spelling-error">Marfan's</span> Syndrome is a genetic disorder which affects the connective tissue of the body. The weakened connective tissue can produce certain external features, which aren't all bad, and certain internal problems, which are <em>all</em> bad.</strong><br /><strong></strong><br /><strong>A person with <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Marfan's</span> will often be the tallest person in the family, with long arms and legs, and long, tapering fingers. The person might be described as thin, lanky, and very <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">flexible</span>, or "double-jointed." The person might seem a natural basketball or volleyball player. A member of the Silver Medal 1984 US Olympic Volleyball team, <a href="http://en.wikipedia.org/wiki/Flo_Hyman">Flo Hyman</a>, had <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Mafan's</span>. </strong><br /><strong></strong><br /><strong>Unfortunately, <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Marfan's</span> also usually affects certain internal organs, and contact sports are not advised. The spine can be affected by <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Marfan's</span>, and an untreated injury to the spine can cause a severe curvature. The eyes are usually affected, and affected in two ways. </strong><br /><strong></strong><br /><strong>First, the lenses of the eyes are often dislocated, causing difficulty in seeing. Indeed, it was a visit to the eye doctor, and his diagnosis of <a href="http://www.intelihealth.com/IH/ihtIH/E/9339/10255.html">dislocated lenses</a>, that led to our realization that I had <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Marfan's</span>. Second, the eye is often more oval, or egg-shaped, than non-<span id="SPELLING_ERROR_7" class="blsp-spelling-error">Marfan</span> eyes. This not only aggravates the vision problem, it can also lead to detached retinas and blindness. </strong><br /><strong></strong><br /><strong>But the big problem with <span id="SPELLING_ERROR_8" class="blsp-spelling-error">Marfan's</span> is that very often the heart and aorta are affected. Specifically, the <a href="https://health.google.com/health/ref/Mitral+valve+prolapse"><span id="SPELLING_ERROR_9" class="blsp-spelling-error">mytral</span> valve </a>and aortic valve are deformed and leak (regurgitate), causing an audible <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">murmur</span> (honestly, mine sounded almost like a toilet flushing!) and the left <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">ventricle</span> will enlarge, or <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">balloon</span>, eventually stretching dangerously thin. The aorta is an even greater problem. It tends to stretch, and it can eventually have tears and leaks. This is called <a href="http://en.wikipedia.org/wiki/Aortic_dissection">aortic dissection</a> and, if not treated very quickly and properly, will lead to death.</strong> <strong>Aortic dissection can be due to causes besides Marfan's. First Gentleman Jose Arroyo suffered aortic dissection in April, 2007, and the <a href="http://www.newsflash.org/2004/02/hl/hl105415.htm">news report </a>of his successful treatment at St Luke's in Manila led to my treatment there one year later.</strong><br /><strong></strong><br /><strong>But if you have <span id="SPELLING_ERROR_13" class="blsp-spelling-error">Marfan's</span>, you don't need to just give up - medical science has progressed a lot in just the last ten years, and a lot of the complications of <span id="SPELLING_ERROR_14" class="blsp-spelling-error">Marfan's</span> are preventable or treatable. My uncle has documented my treatment in <a href="http://www.scribd.com/doc/21612650/Marfan-Story"><span id="SPELLING_ERROR_15" class="blsp-spelling-error">Marfan</span> Story </a>which he recently published on the web in order to bring attention to <span id="SPELLING_ERROR_16" class="blsp-spelling-error">Marfan's</span> Syndrome.</strong><br /><strong></strong><br /><strong>And, as he points out in his story, for the best information about the syndrome, as well as how to recognize it through its <a href="http://www.marfan.org/marfan/2320/Features/">features</a>, </strong><strong>visit the website of the US <a href="http://www.marfan.org/marfan/">National <span id="SPELLING_ERROR_17" class="blsp-spelling-error">Marfan</span> Foundation </a>(<span id="SPELLING_ERROR_18" class="blsp-spelling-error">NMF</span>).</strong><br /><strong></strong>PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com0tag:blogger.com,1999:blog-2683279280133436357.post-79403495348060332752009-11-07T23:49:00.000+08:002009-11-08T00:06:40.174+08:00Through my uncle's eyes...<strong>My uncle has tried to help me deal with Marfan's Syndrome and he wrote notes and short stories about my experiences over the last five years. He recently combined these into one story and published it on a website for aspiring writers, scribd.com. If you want to see Marfan's through someone else's eyes, visit </strong><br /><strong><a href="http://www.scribd.com/doc/21612650/Marfan-Story">http://www.scribd.com/doc/21612650/Marfan-Story</a></strong>PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com2tag:blogger.com,1999:blog-2683279280133436357.post-11752207645104695672009-11-07T23:30:00.001+08:002009-11-10T23:28:34.416+08:00My Marfan Experience - First Post<strong>My uncle suggested a blog as the best way to locate other Filipinos with Marfan's Syndrome. Although I want to do this, my studies keep me pretty busy, and I was reluctant to commit to anything too time-consuming. But when he offered to help, I ran out of excuses!</strong><br /><strong></strong><br /><strong>My mom and I are the only two Pinoys I know who have Marfan's, but there are others. Marfan's can exhibit different symptoms in different people, and some of these symptoms will kill you if left untreated. At the very least, you can feel strange and lonely.</strong><br /><strong></strong><br /><strong>I hope this blog will attract others with Marfan's, so that we can support each other and share information about medical providers and treatment.</strong><br /><strong></strong><br /><strong>The next few blogs will tell a little about my own experiences as well as tell more about the syndrome and sources of information. PrecyPinoy</strong>PrecyPinoyhttp://www.blogger.com/profile/01384559694716163209noreply@blogger.com3