Thursday, February 15, 2018

Mini Conference @ Stanford University in California

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
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.

Their possible topics during this conference are the following:
(targeting medical issues/led by professionals)
Osteoporosis
Feet
Aortic disease
Pain management
Gastro specialist
Eyes (at least two maybe 3 sessions)
Back
Related issues (Loeyes-Dietz and “other related”)
Feet
Gyn focused on women’s issues
Ob focused on Marf pregnancy
Genetics/research
Dural ectasia/CSF leaks/spinal headaches
Headaches

And other topics is about how family members cope with Marfan Syndrome in their family, such as:
Young kids parent support
Living with Marfans/inspirational
Finance
Insurance
Sexuality
Meditation/yoga
Being a patient advocate
Unaffected spouse/family member support
Support group moms
Support group dads
Heart surgery from “both sides of the bed”
Talking to your doc about Marfans

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.

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 https://www.marfan.org/

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 precypiape@yahoo.com or in my precypinoy@gmail.com and you can also  contact me in my Phil. Cellphone Number 09167103383 or inmy US Number 707 334 3939 

Me and My Uncle 

   

            One of the coordinator of this event, and also has Marfan Syndrome 

Saturday, January 9, 2016

Abdominal Surgery

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.

A few months ago I was diagnosed with endometriosis, a fairly common affliction of younger women best described in this article: https://jeanhailes.org.au/health-a-z/endometriosis/symptoms-causes

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.

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.

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.

Besides the antibiotic, the doctors wanted close post-op monitoring so I had a day or so in the ICU right after the surgery.

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.

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.

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!)

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.

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.

If you ever want to talk, call me.


Precy

Friday, September 18, 2015

My Birthday!

September 17, 2015 (My Birthday!!!)

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!

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:


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!

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.

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!

Do you want to talk with others with Marfan’s? Check out the Marfan Foundation’s On-Line Community at http://www.marfan.org/get-involved/community/online-community.  You can chat, follow on Facebook, or follow the forums.  Remember, YOU ARE NOT ALONE! 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?”
(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!)

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! J

 “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!”


Precy

Tuesday, September 20, 2011

Refreshing My Memory

It 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.

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.

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.

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.

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.

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!

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.

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.

I believe we each must enjoy every day God gives us. As Master Oogway explains in the movie Kung Fu Panda:

“Yesterday is History,
Tomorrow is a Mystery,
But Today is a Gift.
That is why it is called the Present!”

Wednesday, September 14, 2011

Finally I'm Back

Hi 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.

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.

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.

Email & Facebook: cindy_linker17@sbcglobal.net

Sunday, December 6, 2009

God Rides a Jeepney

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.

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.

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.

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.

So I paid for his fare. Seven pisos won’t hurt somebody's pocket!

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

Sunday, November 29, 2009

Memories

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.

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.

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.

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.

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!

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!”

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.

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.