My Lupus Story

I’ve had lupus for almost 5 years now. I found out August 2008. I was 3 months pregnant with my 1st child.

I had just gotten accepted to Kuwait Airways in May 2008. After being a full time Ate to my younger siblings, I finally decided to look for work, and venture out into the world. I was going to be a flight attendant. See different countries, experience different cultures. And get paid doing it. It was my dream job!

The hardest part of leaving Manila was leaving my boyfriend of 2 years. We spent each and everyday together and being apart was just unimaginable. On the date of my flight, Marco was waiting with me in the “OFW” lounge (Yes, we were considered OFW’s), and for some unknown reason, we couldn’t stop crying. Saying goodbye was hard. They said that if we were lucky we would get to work a Manila flight 8 months after. 8 months apart. But at that time I honestly believed that flying all the way to Kuwait and being an FA would make me happier.

I loved training as an FA, I loved my new friends, I loved our flat. About mid June I felt like a urinary tract infection was on the way. Having a doctor for a mom, she gave me a long list of meds to take with me, and being a nursing graduate, I knew how to take them and when. And I also knew which ones would not be safe for a pregnant woman. I drank the mildest antibiotic I had, even though I had the stronger version which would cure me in 3 days pronto! My period was and is until now alwayyysss late. But I had one thought in mind, what if I’m pregnant, I don’t want to hurt the baby. Well, well, well….

To cut the long drama short, I did a Pregnancy Test, twice, positive both times. I called Marco, He said come home. I was home by mid July. Good bye FA dreams. Helloooo Mommy!

During that 1st ultrasound I was already 10 weeks pregnant, I heard my baby’s heartbeat. Strong and steady. Hearing it made me proud and happy. I was going to be a mommy! I was soo excited!!

I also continued my monthly check-ups with my Allergologist because I had a 10 year history of vasculitis which never tested positive for lupus. Nevertheless, my doctor tested me again and again. I was still negative for SLE and I was also negative for APAS (Antiphospholipid Antibody Syndrome).

It was some time around late August when I went in for a regular check up. My ob then was listening to the baby’s heartbeat when she frowned. She was quiet for a while. She took her time. And finally said, you have to get admitted into the hospital because your baby’s heartbeat is really slow. She said maybe I just needed to be put on IV fluids.

I was confined for a couple of days, my baby’s heartbeat was the same, slow.. This is actually really hard to write..

They tested me for SLE again, ANA, DsDna, Anti Ro and Anti La – I was now positive, to everything. Not all lupus patients are positive to the Anti Ro and Anti La. I was. Approximately only 0.1 to 0.5 percent of the general population has the antibody (Wikipedia). 

The Anti Ro and Anti La antibodies causes a congenital heart block to the baby.

Heart block is a problem that occurs with the heart’s electrical system. This system controls the rate and rhythm of heartbeats.  (“Rate” refers to the number of times your heart beats per minute. “Rhythm” refers to the pattern of regular or irregular pulses produced as the heart beats.) With each heartbeat, an electrical signal spreads across the heart from the upper to the lower chambers. As it travels, the signal causes the heart to contract and pump blood. Heart block occurs if the electrical signal is slowed or disrupted as it moves through the heart. http://www.nhlbi.nih.gov/health/health-topics/topics/hb/

My baby had a 1st degree heart block. We went to pedia cardiologists, asked my mom’s doctor friends. They said that not all 1st degree hb will develop into a complete heart block. When it becomes a complete hb, it’s irreversible, the only solution is a pacemaker operation. ON A NEWBORN INFANT?! You have got to be kidding me..

caitlin my love

We found out that our baby was a girl. I’ve always wanted a baby girl.. Almost soon after the wonderful news we found out  that her 1st degree hb is now a 2nd degree, then in a few weeks it had developed into a complete heart block. My heart was breaking..

I was on bed rest for the rest of my pregnancy. At the same time, my lupus was going crazy, I had rashes all over my face, wounds on my scalp. I would cry whenever I would see myself in the mirror. I didn’t know what happened. How could things spiral down? Why was this happening? My Marco would always look at me and say that I was still the most beautiful girl in the world.. I couldn’t believe him, all I could see was a monster..

At this rate, my ob couldn’t take my case anymore, it was a high risk pregnancy and we had to find a perinatologist. We met with 1 perinat in Asian who told us on our first ultrasound/check-up appointment that our baby had no chance of survival and the best thing to do was get rid of the pregnancy. It felt like she opened my chest, pulled my heart out, and crushed it right in front of me.

We finally found a wonderful and warm perinat. He practices in PGH and St. Lukes QC. St Lukes was too long of a shot for us, we called and calculated delivery charges and Pedia ICU charges. It would cost us millions, which Marco and I didn’t have. We prayed for it, and opted for PGH.

We also had to find a pedia cardiologist. And we found one of the bests in the country. He was ready to do a pacemaker operation right after birth.

In the last 2 months of my pregnancy I would go to PGH once or twice a week, fall in line for hours, waiting to have my ultrasound done. My perinat wanted his fellows to do the ultrasound. And every time I would I go I would pray hard to God, that my baby was still alive. That maybe something will change and her heart would beat normally again. And every visit at least 1 prayer was answered, my baby was still alive.

caitlin bw 2

January 20, 2009. I gave birth to my baby girl, Caitlin Amelia. I had to undergo a CS operation because her heart wouldn’t be able to take the contractions. When I woke up from the anesthesia they told me that she was fine. That she was ok, Lord God, maybe, just maybe the heart block would reverse completely.

But things didn’t stay the same. Later in the afternoon they said that she needed the pacemaker operation right away, she was turning blue and having a hard time breathing. I haven’t even seen her yet! They wouldn’t let me see her because she was having a hard time breathing. I pushed myself to walk that night, even though I had just had the CS. I needed to see her before her operation.

The next day, January 21, her operation was scheduled at around 8 am. They wouldn’t wheel me out to her. They didn’t want me to see her at her state. After an hour or two, I don’t remember, it felt like days.. They told us that the pacemaker operation was successful and they were now allowing me to be wheeled outside the OR.

I remember sitting outside the OR, the doors opening, and out came this huge incubator with my little Caitlin inside, all these straps and tubes plugged into my baby girl.. She was soo small, she came out 5.5 lbs, too small.. 1 day old and she already went through soo much.. I was crying, feeling hopeless that I can’t do anything to help her right now. My poor baby.. She was still blue, she was still adjusting.. But she was alive. My baby was alive.. Thank you Lord..

DSCN7769She stayed in the Pedia ICU for about 8 days. I was discharged after a few days so our daily routine was wake up early, drive to PGH, and stay until night fall. It was the same for 8 days. And every morning as we enter the PICU doors I would pray Lord, please let my baby be there when I get inside.. And as we leave at night, I would pray, Lord please keep my baby safe through out the night. She had a minor infection and jaundice which they were able to treat. Soon we were allowed to move her into a room. Her breathing had normalized. She was doing great!! The doctor said that soon we would be able to bring her home! Home..

DSCN7775 bFinally, I got to hold her in my arms..

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Holding on tight..

She did go home. On January 31, 2009 Caitlin went home. Not with us, but to our Father God.

We woke up early that day and noticed that she was turning blue. Marco ran to the nurses station, I remember shouting and screaming. Everything was in slow motion.. The doctors came, the room was filled with nurses and doctors. The doctor was pumping her chest with 1 finger! That’s how little she was! CPR with 1 finger! It started at about 5am. Ended at about 12 noon.. She finally let go and all the pain was over.

Marco never told me this until last year during our Marriage Enrichment weekend, that while he was holding Caitlin’s hand, he prayed to God and said “Your will be done,” and after a few minutes Caitlin was gone..

God has a reason for everything, I now know His reason for everything that happened. It was hard to let go, until now I still cry like a crazy person. I wrote this in 3 hours because I would stop every once in a while and cry..

We celebrate her birthday every year. Someone once told me that as long as the parents are alive, every year the angel gets to celebrate her birthday too, until the time that we meet again.

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Caitlin is now 4 years old. We miss her each and every day. But she’s at the best place, right beside God, and knowing that she’s happy and pain free is enough for me.

I still have SLE. Lupus will never go away, that’s what they say. But right now, I am on “remission.” This year, all my tests came back negative, and I am just enjoying living my life, breathing everything in..

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About Ky Malupa

Housewife. Mother of 2 angels. Gluten free, dairy free, corn free baker and eater. SLE patient. Hair and Makeup Artist. Image Enhancement Instructor.
This entry was posted in The Lupus Warrior. Bookmark the permalink.

24 Responses to My Lupus Story

  1. Mara Picornell says:

    Hi Kyla! Sayang I didn’t know that you were in PGH at that time. I just started my duty in the Dental Department in PGH at the same time you were in the hospital. I’m so sorry to hear about Caitlin but really, there must be a reason for all of these. We must not lose hope. Let us also be thankful that you now have a little angel in heaven watching over you. I’m praying for the best for you and Marco.

    • Ky Malupa says:

      Hi Mara! Ooohh Sayang! Anniefel was also in PGH during that time and she would visit Caitlin in the Pediu ICU often 🙂

      Thank you for the prayers, we are also including you guys and your sister’s recovery in our prayers.

  2. Mai says:

    Hi kyla, i’m in tears while reading your story. im so sorry for your loss. Just keep the faith that God’s plan is always the best. I’m a lupus patient too. I was diagnosed after giving birth to my second child. Doctors say lupus has no cure. But i keep my faith in God that he will heal me. I want to share with you the book i’ve read that give me hope and new life. Awaken the healer in you by Bo Sanchez. Here’s also the link to healing habits that have helped and guided me along. http://bosanchezmembers.com/amember/go.php?r=42077&i=l3
    I’m now a vegetarian in progress. I always pray to God that He will continue to bless me with his healing hands. God is our ultimate healer! God bless you.

    • Ky Malupa says:

      Hi Maj, thank you for reading my story. Amen to that! Just have faith and surrender everything to God!

      Thank you for sharing the link, will definitely check it out 🙂 I am also on a strict diet. My husband formulated for me a personalized version of the Paleo diet.

      God bless always Maj!

  3. wendy says:

    GOD bless you and may God continue to bring meaning in your life. God is and always be with you and your baby is incredibly celbrating life with Jesus! 🙂

  4. Jessebel Pinlac says:

    ATE KY, I WAS CRYING THE WHOLE TIME I WAS READING YOUR ARTICLE. THE PART WHEN YOU SAID THAT IT WAS ACTUALLY VERY HARD TO WBE WRITING ABOUT IT, IT WAS ALSO VERY HARD READING ABOUT IT. HEARTBREAKING. I CANT IMAGINE A WKMAN LET ALONE A FRIEND GOING THROUGH THIS. CAITLIN WAS THE MOSY BEAUTIFUL BABY GIRL IVE EVER SEEN IN MY LIFE. SHE IS AN ANGEL. SHE WAS SO STRONG AND SHE FOUGHT HARD. I PRAY FOR HER SOUL.

  5. leigllanto says:

    My sweetest Ky, Caitlin is sooo pretty just like you. I know she is happy right now with our creator. My prayers always darling ,good health and happiness with you and Marco. God bless!

  6. Hello, I cried reading your story about your baby. I cried for you and for your baby because it reminds me of how close I came to losing my baby last year. I didn’t know I had Lupus until this year, but I had a very difficult pregnancy full of hemorrhaging and a million other issues. My son is here and healthy now, but I lost three babies before my oldest was born 7 years ago. Now I am barely finding out why. God bless you and your husband and, of course, your beautiful angel baby.

  7. rowena galvez says:

    hello kyla, idk if you still remember me but i am a friend of your mom. we were classmates and groupmates in med school. i heard about your lupus when another classmate (Menchie) told me that she saw you in Healthway ATC when you were still pregnant with Caitlin. from that moment on, i was already asking God to let you have a normal pregnancy and a healthy baby. a few months later, i remember receiving a text from you thanking me for my prayers and that you just have delivered to your baby girl. i was so happy for you then, and i emailed Meredith the next day (wala pa kasing FB noon) congratulating her on her very first apo. i even kidded her that since the lola is pretty and the mommy is also pretty, i am sure the baby will be the prettiest of all! and i was so shocked and surprised when she replied to my email, telling me that Caitlin has a heart block and she fears that she may not live long. i really didn’t know how to reply to her email. i was really taken aback. today, while reading your blog, it really brought tears to my eyes. SLE is really such a bitch at times, but i am also glad that you are in remission and is living your life well. yes, God does have a plan for all of us. and even though you lost your daughter, you must be thankful that you have gained an angel in heaven. take care! 🙂

  8. Macbeth Abuzo says:

    hi Ky! it’s a heart breaking and heart warming story.. naiyak ako sobra.. shocked to know but i’m glad your surpassed it. Stay strong and keep the faith ❤

  9. Hi Ky, I read your story… I’m so sorry for your losses but I pray for God to heal you and give you a wonderful life and perhaps children in the future. Thank you for sharing this in the midst of your pain. Your strength can give hope to other women living with Lupus. God bless you

  10. Andy Lopez says:

    Hi Ky, I am the brother of Sugar Lopez Lawas…salamat sa inspiration, may SLE din ang wife ko and same as you..we try to live normally despite our situation..God Bless you and Marco.

    • Ky Malupa says:

      Hi Andy! Sorry for such a late reply.. Thank you for reading my post. I pray that your wife triumph over her illness and will find a good balance between living with it and living despite it. God bless!

  11. Pingback: I AM A LUPUS WARRIOR | The Housewife

  12. mariareginac says:

    Hi Ky, you are a brave and lovely soul, inside and out. I got to visit your website on accident when I got curious about a friend’s FB post sharing your “I am a Lupus Warrior” piece. I went to the other pages as well and so now have a fairly good idea of how you are coping. You remain positive and find humor in the darkest of situations. May light shine upon you daily so you will continue to be an inspiration to so many, even those who do not have lupus. All the best and good luck on your make-up career. Oh, and what beautiful, proud cheekbones you have! Rare beauty indeed! God bless!

    • Ky Malupa says:

      Hi Regina! Thank you for reading my blog, and appreciating my “humor” 🙂 May love and light shine upon you too, each and every day ❤ God bless you dear!

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