GENERAL SANTOS CITY (MindaNews / 22 December) – Three days to Christmas Day, Guia, my 20-year old daughter made another trip to the hospital for her regular laboratory tests and a scheduled follow up check-up with her doctors.
“Magpapasko na pala, Tay. Sana gumaling na ako para maging masaya tayo,” she quipped. The tests are necessary to determine if she has infections that must be addressed immediately.
I felt guilt for not giving attention to her during those days she asked me to bring her to the doctor when she was not feeling well weeks before she was first admitted to the hospital.
Since September, Guia has been in and out of the hospital for what doctors initially diagnosed as severe pneumonia. She gestured having pains in the back and chest.
The last time she was admitted was at the end of October on what we recall as “grueling twelve days” in the intensive care unit of a hospital where I had to rush her just before midnight on October 25, barely 48 hours after she was discharged from the same hospital.
Ordeal and fears
The life-threatening situation Guia was in that night of October 25 changed everything for her and the family. The promise of a full life and a bright future ahead of her was engulfed in darkness.
At the emergency room, Guia was placed under extreme monitoring. They did not move her to the Intensive Care Unit (ICU) at once because her blood pressure was so low and at times nurses could not hear her pulse.
It was an ordeal for her and me as the clock ticked from midnight to mid-morning. A father helplessly staring at her daughter gasping for breath despite being on oxygen, blood pressure apparatus hanging on both arms for constant check, on catheter amid the responding medical staff working on their life-saving duties into the wee hours.
Guia’s screams of “Tay, hindi ako makahinga!” punctuated the stillness of the night. She asked me for water and food but doctors prohibited it for it may further endanger her.
Doctors initially diagnosed Guia to be suffering from septic shock or severe blood infections. There was silence but I could sense the intensity of the medical staff battling to keep her heart rate normal, revive her dropping blood oxygen and faltering pulse rate.
Mid-morning the next day, the staff saw an opening – a bit of improvement in her blood pressure, and they rushed her to the ICU. That was after she tested negative for COVID-19 virus.
Still sleepless and confused = not having eaten anything since the night before — I recall telling the staff, “anything to keep her alive,” after they asked me for my consent on the procedures they needed to perform.
I was told Guia had to be connected to a ventilator so that her lungs could relax and avoid a possible collapse.
With the ventilator tube, Guia could not talk. I bought a small white board and a marking pen, call it “Marites Board” to communicate with her. It is on the board where she writes everything she wants to say to me, the nurses and the doctors.
She went through more tests that revealed she was positive with an auto-immune disease and doctors diagnosed her with systemic lupus erythematosus (SLE), the most common type of lupus.
With this kind of disease, the body gets attacked with friendly fires, meaning when an infection occurs, the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs, like the joints, skin, brain, lungs, kidneys, and blood vessels.
When told about this condition, my knees trembled, like the earth opened up to swallow us. I quivered on the thought that it was almost the same time in 2016 when we rushed Guia’s mother, Gemma, to a hospital and never returned home breathing due to cancer.
Guia’s doctors explained that while there is no cure for lupus, there are medical interventions and lifestyle changes which can help control it.
“It can be managed. There are many who have grown old despite having the disease,” assured Dr. Emilia Juele, Guia’s attending physician.
Guia started to search the net about the disease and found out it was a common ailment and most of the things she found about SLE are not quite reassuring.
In the meantime, Guia needs to take her medications which contain steroids to slacken the effects of infections and ease symptoms of the auto-immune disease.
It’s been weeks since Guia left the hospital, and she has yet to regain her voice and strength. Her wobbly legs prevent her from climbing stairs and can only walk short distances.
The weeks of being in the hospital forced the dean’s lister to take a leave from school this semester. Her promising beverage business which she started a year ago came to a halt.
Without her voice, she cannot continue as vocalist of “Arya,” the band of the Mindanao State University-General Santos. Also, no new postings on her YouTube account where she uploads the songs she personally wrote and composed.
She used to write contents and articles for “commissions” from online clients and has not made any of it for weeks now.
Fear and uncertainty linger in the family. How she and the family will confront the challenges of the disease in the coming days, months, and years, remains blurry.
For now, she needs to undergo periodic tests for her creatinine, blood chem, urine to find out if there are infections in her tissues and organs.
Since her days at the ICU, Guia fears being left alone, forcing me to be at her side almost 24-hours daily. She even tags along when I have to do some errands.
Her doctor told us to call her up at once should there be anything unusual that Guia may feel like allergies, persistent coughing and inflammation.
Like me, I can sense Guia feeling scared and confused on how we will be facing the challenges that are to come. She said it is disturbing to think that her ailment would turn into something disastrous.
Hope and prayers
Having the incurable lupus is already scary, more so on the thought that medication for the disease is daunting and costly.
But Guia said she keeps her spirits up thinking of the prayers and the help she got from the many who have shown care for her.
She said the prayers that all will be well for her and those who work at the hospital and the moral and financial support she got gave her a second lease on life and that is more than enough reason to be hopeful.
Indeed. It was something anyone would have not thought with what happened that “arduous night” of October 25.
“I would rather hope for now. Later na yang worry, after all it’s Christmas time and I am still around,” she said smiling. (Rommel G. Rebollido / MindaNews)