APAS after Birth

APAS after birth and migraine

APAS after birth.

Who would have thought that this dreaded disorder can still haunt you after pregnancy and way after the birth of your child.

Antiphospholipid Antibody Syndrome, otherwise known as APAS or APS in some countries, is an abnormal clotting disorder>>. It is often diagnosed in women who have had recurrent miscarriages.

Once diagnosed with APAS, pregnant women are required to be on several medications such as aspirin and heparin to thin their blood and make their pregnancy viable.

However, APAS can still affect your life even if you are not pregnant. I remember having terrible migraines since I was a kid. It was exponentially magnified when I was working and the migraines came with nausea and pain at the back and by the neck. Of course, like many workaholics out there, I just attributed it to stress. Upon some more probing, turns out that what I have been feeling may be symptoms of APAS.

According to National Heart, Lung and Blood Institute, APS can lead to many health problems, including stroke, heart attack, kidney damage, deep vein thrombosis, and pulmonary embolism and some of the signs and symptoms are:

  1. Chest pain and shortness of breath
  2. Pain, redness, warmth, and swelling in the limbs
  3. Ongoing headaches
  4. Speech changes
  5. Upper body discomfort in the arms, back, neck, and jaw
  6. Nausea (feeling sick to your stomach)

In retrospect, I have noticed a significant drop in my migraine episodes when I was under aspirin therapy (pre and during pregnancy). After giving birth to Santi, I stopped taking aspirin thinking that everything was over. However, I have been not feeling well lately with extreme migraines and some overwhelming fatigue. I dilly-dallied for a while, thinking I was just under the weather but it turns out this crazy serious condition is here again, knocking at my door.

I consulted with my immunologist if I should continue with my aspirin therapy (that’s daily low-dose of aspirin) and to my surprise, she said yes! I should have tested myself sooner but I never really thought that my migraines could be connected to my sticky blood yet again.

Anyway, APAS mommy, if you are experiencing the same, please do consult with your immunologist or your obstetrician. As we all know, with repro-immune disorders, one treatment plan does not fit all so it is always BEST to consult your physician.

Hope this helps!

Toodles!

APAS Diaries: Baby Kiel – God Will Provide

A month ago, I shared to you the first installment of my APAS Diaries: the story of Baby Bella and her mom, Gracey>>.  Gracey’s story proved that we should never lose hope and God will answer our prayers in His own time. She never gave up even after five miscarriages; she was scared but never lost hope. Now, she is holding her precious and oh-so-beautiful baby Bella.

Today, I want to share with you the story of Em.

APAS Baby Kiel

I met Em online, in our APAS Facebook support group>>. She was researching about APAS for a paper that she was working on and I shared to her my blog which basically outlined my RID journey.

Em is such a joy to talk to. She is full of energy and candor. She was kind enough to share to me her RID journey and all their difficulties going through all the treatments despite some financial challenges at the time that she was carrying Kiel.

It always amazes me how we can connect deeply with people in this day and age, without having to meet them personally. In my case, I share some of my daily musings and pains and joys with some of these APAS survivors even if I am yet to meet them face-to-face.

Her story will inspire those who are in the verge of losing hope because of financial worry. As I always say to those who reach out to me in this blog, for some reason and cliche as it may sound, God always provides.

Read on for the story of rainbow baby, Kiel <3

APAS Baby Kiel

– o –

Name: Emily

RID (repro-immuno disorder) Categories: 1 and 2

Immuno: Dr. Jovelina Abong

Age (optional or estimate, e.g. early thirties, late twenties) 34

How many pregnancies?  2

How many miscarriages?  1

Live births? 1

1. How did you know that you have RID?

I got married November 2012, and then by January, immediately pregnant na ako agad, akala ko okay lahat, ang bilis. We we’re building our own house tapos magkakababy na kame. PERFECT!

And then routine check up ko with my OB, wala sya. So lumipat ako sa ibang OB sa hospital na yon, (yung unang OB ko is not checking fetal heart rate). Pwede ko naman palipasin na lang at bumalik na lang pag andon na OB ko, pero naisip ko that day na sige lipat na muna ako ng ibang doctor para macheck lang si baby.

To my surprise, she is telling me na wala syang marinig na heart tone, sabe nya baka daw posterior yung placenta kaya nya di marinig. Pero gusto nya mag pa ultrasound na ako that day.

Nag pa ultrasound ako, and bilang nurse, habang ginagawa yung ultrasound, may idea na ako, walang sound. Tapos binasa ko report, fetal demise.

Gumuho ang mundo ko. Hindi ako mapatahan, ang sakit!

So tinawagan ko husband ko di ako mapatahan sabi ko wala na si Ethan. Nabigla din sya. That day after ultrasound dumating na yung original doctor ko, and I gave him the ultrasound (nasurprise sya na nagpaultrasound ako). Binigyan ako ng Cytotec  to put in the genital area and to take by mouth.

Nawalan ka na ng anak, pinahirapan ka pa.

I am not sure if this is the routine, but knowing this doctor hindi sya yung tipong “by the book” na doctor. Considering na 3 weeks ng patay ang baby ko sa tiyan ko, pinag labor pa ako. 1 week akong palakad lakad para maglabor, naka antibiotic na din ako non.

Alala ko pa sabe ng doctor ko, “di bale, try na lang ulet.” Buti di na ako bumalik sa kanya, I know same thing will happen again. After kong  ideliver yung baby kong una, hindi sya pwede sa sementeryo kasi less than 500 grams sya, kaya andito sya sa house namen, tinaniman ko, inaalagaan pa din namen.

After that, nagresearch ako napadpad nga ako sa forum sa female network about APAS. Wala pa akong idea, pero gusto ko malaman. Walang explanation bakit namatay baby ko considering na I am on my 5th month, no way di ako papayag ganon ganon na lang.

So nagpatest na ako, mahal! But other tests were covered by an insurance company, thank God. Yon nag positive nga ako for category 1 and 2.

2. What did you feel when you first found out you had RID?

Ang sakit! Iyak ako ng iyak, Iniisip ko what have I done wrong? Parang of all people ako pa talaga. Ang sakit ng fact na, sarili kong katawan ang dahilan bakit nawala ang baby ko. It haunted me for quite some time. Until na accept ko na.

3.  What preconception treatments did you have?

Aspirin. February 2014 lang ako nag pacheck up and nasa aspirin pa lang ako. Nirefer ako ng OB ko kay Dra. Aleta, but I can’t afford her. Kailangan ko talaga ng mas mura. I asked for her permission to get another immunologist. Dun ko nahanap si Dra. Abong, malapit pa sa amin. Sobrang bait at asikaso. Nag pa add pa sya ng iba pang tests for lupus. Tapos March pag balik ko, buntis na ako hindi pa ako naschedule for LIT. Kaya ang nangyari, every week akong nag LIT. Ang sakit sa bulsa, pero laban lang.

4.  What is the greatest challenge of having RID?

Challenge? Aside sa pera na talagang obvious na pbvious na challenge sa situation ko, yung ANXIETY at ka praningan. Despite medication, na papraning pa din ako, natatakot. Mas madami pa atang nadasal ko sa pregnancy ko kesa sa nadasal ko buong buhay ko. Dasal ng dasal talaga literal.

5. How long after the treatments did you get pregnant?

1 month on aspirin, I got pregnant. Wala din kasi sigurong problem sa conception, ang problem talaga is maintaining pregnancy.

6. What were your medications during pregnancy?

1st trimester Duphaston na ang mahal hahaha every hours!!!!! Candy? Lol. Also, aspirin and heparin.

7. Any advice to those who are diagnosed with RID and are still trying?

PRAY!! And learn to trust your self and your doctors. Basta sure lang kayo na sa tamang doctor kayo, go. Walang impossible sa Panginoon. And don’t be too hard on yourself! Mahirap pero kailangan din natin alagaan ang sarili naten. 

8. Please share your RID timeline. 

2013: First pregnancy

February 2014: February confirmed Category 1 and 2

March 2014: March pregnant, on heparin from day one of confirmation of pregnancy

March 2014: subchorionic bleeding, never put on bed rest duphaston lang every 6 hours. Weekly check up and ultrasound on first trimester, second trimester to third trimester every 2 weeks, with ultrasound also, may kasama pang Doppler ultrasound. I was on heparin the entire pregnancy. Na stop lang pala 1 week before scheduled CS. Namakyaw ng taho at soya milk, dahil hinahabol naming ang weight ng baby ko. With bilateral uterine artery notching the entire pregnancy kahit nakaheparin ako. Galit na galit ang katawan ko sa baby ko, but no, hindi kame nagpatalo. 

November 2014: Gave birth to my precious baby boy, who’s now 2 years old and 5 mos.

9. What is your greatest realization?

Napakabuti ng Panginoon, hindi nya kame pinabayaan in all aspects. Hindi nya ako binigyan ng category na kailangan ng IVIG dahil alam ni Lord d kaya ng budget.

Ang hirap ng pinagdaanan namin, siguro marami pang mas mahirap ang pinagdaanan, pero yung RID kasi kung normal ka lang ng empleyado just like me and my husband aaray ka talaga, but we prayed talaga na tulungan kame.

Tinulungan nya kame makahanap ng mga resources na makakatipid kame. Dinala nya ako sa doctor na afford namin. Imagine paid 56k sa isang magandang private room sa PGH, CS, and NICU ang baby ko for 4 hours!

What a blessing!

Mahal na mahal pala ako ng husband ko. Hahahha napaka supportive napaka alaga, hanggang ngayon. He would pray with me, cry with me, lahat! Dati iniisip ko kung iba siguro napangasawa nya mas madali ang buhay nya. But then again, kung iba siguro we would never learn how to love and support each on a different level.

10. What/Who helped you through this difficult time?

My husband, my parents, my husband’s parents, lahat buong pamilya namin, pero lalong lalo na ang husband ko. Yung pag intindi nya lang sa akin sapat na to make me somehow feel that everything will be fine. Sobrang praning kasi ako. He’s truly God’s gift. Feeling ko wala ng problema pa ang pwedeng dumating na hindi naming kakayanin.

11. Anything else you would want to share.

Trust your instinct. Malalaman mo kung may mali sa katawan mo. Like yung nangyari sa akin na try lang daw ulet sabi ng first OB ko, I know something’s not right. Mag research! Do your research, and wag mahiyang magtanong sa doctor. Pray pray napaka importante! Pray unceasingly to the Lord.  HE WILL NEVER FAIL YOU! <3

APAS Diaries: Baby Kiel

Thanks for sharing your story, Em.

Let me share this prayer, loves.

Psalm 107:1-10

Give thanks to the Lord, for he is good;
    his love endures forever.

Let the redeemed of the Lord tell their story—
    those he redeemed from the hand of the foe,
those he gathered from the lands,
    from east and west, from north and south.

Some wandered in desert wastelands,
    finding no way to a city where they could settle.
They were hungry and thirsty,
    and their lives ebbed away.
Then they cried out to the Lord in their trouble,
    and he delivered them from their distress.
He led them by a straight way
    to a city where they could settle.
Let them give thanks to the Lord for his unfailing love
    and his wonderful deeds for mankind,
for he satisfies the thirsty
    and fills the hungry with good things.