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!”
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!”
This comment has been removed by a blog administrator.
ReplyDeleteThanks a lot for appreciating; this is my only way of helping others like you who is experiencing Marfan. I don’t want them to lose hope, because like you said. God is good .
ReplyDeleteAnd most of all I’m hoping that this could be spread out in our country here in Philippines
ReplyDeletehi, I wish I've read this blog 6 years ago, my boyfriend for 6 years passed away last 9/15/2011 due to ruptured aortic aneurysm, he also has marfan syndrome.
ReplyDeleteHello Angel, I’m so, sorry to hear about your boyfriend. I know what you’ve been through is not easy. And I’m so sad hearing that. But I I know one thing for sure that God has a reason with all this Angel.
ReplyDeleteThank you so much for sharing, because this could encourage me more to reach out more to those people who are affected with this Marfan Syndrom like I do. May you help me with this journey through spreading my blog to some people you know.
Really interesting to go through this..nice to know..thanks alot fr sharing this..
ReplyDeleteYou're welcome
ReplyDeleteHey there
ReplyDeleteI am fifteen and recently found out that it is very very very likely I have Marfan's. I have not had any genetic tests or anything yet but I have most of the symptoms, and already have back pain from scoliosis which apparently is related? Anyway I am just coming to terms with it and it is really interesting reading your blog. Thanks! :)
Thank You So much for liking it .... :-)
DeleteHey,I am a 16 years old Filipino student,I just want to ask you what kind of heart surgery was performed on you and the cost of the operation?What are the complications of the surgery?
ReplyDeletehello, first of all I do apologies for responding too late. but if you're still interested here is my contact no. I will be glad to chat with you. 09061925026. pls. do text me and I will be glad to contact you regarding with my heart surgery. But at the same time, as soon as you will reply to this, I will email you also the answers of your inquiry.
Deletehi, would you know which doctors to contact who specialize in managing Marfan Syndrome? my husband seems to have it - all symptoms are there: unusually tall height (6'3"), thin body frame, elongated fingers, stretch marks despite his thin physique, and high palate (hence having a lisp). it will help a lot. thanks.
ReplyDeleteHi Ma'am, this is Precy, I sincerely apologized or this very late response.
DeleteI had been busy in life lately, it took me a while to check with my blog.
Yes Ma'am I will be glad to assist you in giving Doctors which has enough knowledge about this Marfan Case.
Now, first of all I will be needing to know if saan po yong location ninyo. I'm actually here in Cagayan de Oro City by now.
Also here is my personal contact no. 09061925026. if you're still interested pls. do contact me.
I have a 10 year old son who was diagnosed of having Marfan Syndrome when he was 7 by an eye specialist in Makati Medical Center. He has a dislocated lens in his left eye and has the physical attributes of an individual having marfan - long legs, arms, lean. Currently my son sees two eye specialists every quarter, a pedia cardio every year in addition to his quarterly check up with his pedia doctor. When he was 7 , he was referred to a pedia pulmo who advised us that it is not necessary to bring him to a pedia pulmo yearly unless necessary. I am a frequent user of the Marfan Website so as to be updated. It is not easy for parents (emotionally)to have at least a child with medical condition but reading your blog gives us the hope and the comfort that our son will be okay. MDA
ReplyDeleteHi Ma'am / Sir, I sincere apologized for my very, very late response to this email that you had sent to my blog. I was been busy facing and fighting with this very competitive world. I had been off and on with school, and just lately I had a work, which was just been over last Month of May. I will post more updates about me soon.
DeleteI deeply appreciate, that simply with this blog that I made I could at least let other people know that they're not facing this case alone.
Last, last year 2011 I had been to US and had joined a conference, because I had an uncle who registered me at that National Marfan Foundation at US. I belong at California chapter. in fact I have here some video related to Marfan, which I will be gladly to share with you too, if you are interested to this I will mail it to you.
by the way here is my personal contact number 09061925026, if you have some important information or anything po to ask about me, I will be glad to address that.
Once again thank you so much, and hopefully pls.. do continue to follow my blog.
Pks po pkitulungan ako saan po ba dto sa pilipinas ang dalubhasa pra sa marfan syndrome hirap na hirap na po ako eto po emailko birungmarjorie@yahoo.com salamat po
ReplyDeleteHi Beanca I'm so soy for my very late replay. by the way where are you located by now. I'am interested to assist you in finding doctors which are good in Marfan. here is my personal phone number by the 09061925026. pls do text me, and I will be glad to contact you.
DeleteI'm currently here in Cagayan de Oro right now, and at the same time I ave my Doctor here.
hello, I am having a case study right now about genetic diseases but my problem was what disease it would be then I found your blog site. Can you be my respondent so that I can use Marfan Syndrome as my topic. Here's my number if ever you'd agree. 09268984420/09395372609. Thank you.
ReplyDeleteSure that will be wonderful.
DeleteHello their..... yeah! sure.. I will be more than glad to share with you about my experience having this Marfan Syndrome, and If how did I live my everyday life having a Marfan Syndrome....
DeleteThank You So much for dropping by in my blog.
Hello I'm 35, have mitral valve prolapse, I'm tall and thin, have long limbs (though I don't have really long ones) and have pectus excavatum. I think I may have Marfan but I'm not sure. And oh, I'm living in CdO too.
ReplyDeleteAre you a member of a support group? Would be nice to join your group. :D
Tried looking for your official Facebook page and used this: cindy_linker17@sbcglobal.net but no luck; FB doesn't generate any matches.
ReplyDeleteAlso, who's your doctor here in CdO (the one who's proficient in dealing with Marfan cases)? Mine's Dr Bacal.
Hello po, my current facebook account is precy Soulsurfer na po.
DeleteAbout your question if who's my Doctor here in CDO it's Doc. Christine Ann C. Khu po.
Sory po for this very late response Im just really busy with my studies.... Also here's my number if you would like to inquire more. 09061925026,
I'll be glad to share more about my Marfan Experience.
I tried adding you on FB but you didn't respond to my request. :( If you ever change your mind add my Combine account. :D
DeleteGood day everyone! Thank you Precy for your blog. Please allow me to share my story in order to give direction to those people who have this Marfan Syndrome here in the Philippines and for me to give thanks to the surgeons/consultants who done a successful open heart surgery to my wife and most especially to thank God for making all the success.
ReplyDeleteLast April 8 2014 we went to (PHC)-Philippine Heart Center from Ormoc City in order to check my wife's heart condition but after her 2D Echo and Aortogram she was directed to emergency room for admission because she has thoracic aortic aneurysm with stanford A dissection which will explode at anytime.
The size of her aortic aneurysm reaches 7.5cm.
Further diagnostic on her by Dr. Edgar S. Tuazon revealed that she has a Marfan Syndrome that causes her thoracic aortic aneurysm. she also has hypertensive cardiovascular disease.
On May 20 2014 she undergo an open heart surgery that lasted for 14 hours with the following operation being done: repair of mitral valve, replacement of Aortic valve with mechanical valve and Bentalls procedure.
Thankful to God that the operation was done well that not even a single complication arise. Thankful to our brothers and sisters in Christ who spend their time in praying.
For you info last 2009, her 2D Echo shows that she has a severe aortic regurgitation. On July 2013 she had a stroke and this Jan 2014 she had heart failure.
As i recall, on her heart failure, there was not even a single hospital in Ormoc City that will accept her as all of their beds were occupied by the victims of Typhoon Yolanda.Its a miracle that until now she still alive.
The following surgeons, consultants as well as anesthesiologist we were grateful of having who performed the successful surgical operation as follows:
1. Dr Edgar S. Tuazon Chief Surgeon/Consultant
2. Dr. Marvin D. Martinez, Surgeon/Consultant
3. Dr. Antony M. Manio. Surgeon/Consultant
4. Dr. Ali T. Makatanong, Surgeon
5. Dr. Neil Christian P. Villamucho, Surgeon
6. Dr. Carina B. Dipasupil, Anesthesiologist
7. Dr. Jennifer S. Carlos, Anesthesiologist
8. Dr. Darwin James Alvarez, Anesthesiologist
9. Dr. Catherine G. Duazo, Anesthesiologist
To the cardiologist who attend/care my wife while she still admitted were as follows:
1.) Dr. Ed Gabitoya
2.) Dr. Ma. Belen A. Balagapo
3.) Dr. Aviento
4.) Dr. Edward Nino J. Gacrama
5.) Dr. Franz Albert Go
6.) Dr. Karen Marie V. Cunada
Also giving my special thanks to cardiologist/internist Dr. James Ho and Dr. Francis Carl L.Catalan who endorses us to charity as our financial capacity is not sufficient enough to cover entire cost of hospitalization considering that we are typhoon victim. Also to Alvin J. Brioso R.S.W who assess us on charity availment.
For Hospital, if your concern is all about the heart, i highly recommend Philippine Heart Center. As they have the same advance equipment like in Saint's Luke.The most important is that it is cheaper while consultants, surgeons and cardiologist are of top caliber as they routinely does heart surgical operation in a day to day basis. Imagine at times in a day, they have 10 to12 patients ( adult children ) scheduled for surgery. I have seen a lot foreigners seeking medical treatment as well and to my amazement even the king of Guam was there who was also operated the next day. Also the doctors/surgeons/nurses treated my wife like their family.
Furthermore the PHC has a charity but in categories depending upon your income.
I hope and pray that one day the dream of Dr. Edgar S. Tuazon of having a Marfan Foundation in the Philippines will come true.
If you wish to obtain copy of operating room record, clinical abstract or any further queries i can be in touch on my email: oliverjayme1@gmail.com
I hope that all the this will bring enlightenment to those are still seeking information about this issue.
Thanks again Precy.
Hello po Mr. Oliver you're certainly welcome po. Also thank you so much for sharing your Marfan story. I'm pretty sure po that whoever will visit this blog of mine will surely gather information from you as well. I remember that there are some people who are really seeking for Doctors who really know about this Marfan Syndrome.. And I'm glad that you have all this list of names of Doc.
ReplyDeleteI was not able to visit this blog of mine for awhile, but never the lest here I'am, and I'm back.
Please let’s not break this channel of letting people know that people with Marfan syndrome do exist, because by simple sharing your story, experience and knowledge regarding this Marfan syndrome will surely help those others that has the same case…..
Hi! Did you have your genes tested? If yes, where? I am currently in Germany and it was finally confirmed here through gene test that I am a Marfanoid, but we are puzzled from whom I got it, hence, my geneticist wants my parents to have gene test too ASAP, coz aside from Marfan, there is another fibrillin mutation found, we wanted to make sure if both were inherited or one of them developed during embyonic stage.
ReplyDelete