A Story of my medical journey from a foreign country and back to the Philippines.
Last January 2017 I went to Qatar after graduating from college to work as an OFW. I got a job at a media company as a Social Media Specialist. Almost half a year into the work, I was diagnosed to have a Lower Respiratory Track Infection and was advised a month’s medication. My boss then was a heavy smoker and I am Asthmatic so my condition was already bad enough when I went to the health centre for a check up. The reason I stayed long enough is because I was bound by contract of one year.
A month after my medications, we had a family day event at church in Al Wakra Stadium in Qatar where I performed a dance number with my church ministry. During the performance, My left thigh started to ache. The pain was so intense I had to sit down and rest for a few minutes after the performance. After the pain subsided, I went to look for my friends so we can go around the venue to look for food to eat. As we were going around, I felt so exhausted, light headed, nauseous and my world felt like spinning.
We went back to our seats and I rested and watched the performances of the other churches. As we were planning to go home, I told my friend that I couldn’t stand the headache and I can no longer stand. When my friends tried to carry me, the moment I was brought up, I didn’t know what happened next. I woke up in Al Wakra hospital and stayed there until the night. I just had my fever lowered and then I got discharged.
A few days after, I went back to Leabaib Health Centre complaining of chest pains and I haven’t been able to sleep because the pain radiates all over my body. I was referred to the emergency room but I was not able to go for some reason. That afternoon, I fell so ill but no one can bring me to the ER so I just slept in our room at the villa. The night I woke up, I can no longer move my body. It felt so heavy and I was having a hard time. I couldn’t go to the bathroom to pee because I couldn’t move. I wasn’t able to sleep through the night because of pain and because I’m scared of what’s happening to me.
The next day, I got a little better but got the worse feeling after lunch so I was finally brought to the ER. The doctors did a lot of tests ruling out stroke, aneurism, etc. I had my MRI, CT scan, blood tests, Lumbar Puncture.
I got admitted at Hamad General Hospital for 17 days. During those 3 weeks, I was vomiting my food, my headaches were the worst, I was bed ridden and I couldn’t eat anything. Eventually my upper arms were affected as well and the doctors initially diagnosed Multiple Sclerosis or Myelitis of unknown etiology, Corpus Callosum Agenesis, Collosal hypogenesis dysgenesis with Colpocephaly. The lesions they found in my spine was steadily going up my spine in every MRI they did. It was too hard for me to even lift my head for a time. During the course of my Steroids, I had started my physiotherapy as well.
A few weeks into hospitalisation, I had my first seizure attack after that September 1 incident at the stadium. It was a frightening experience as I gained consciousness that I couldn’t talk or move for about an hour and my heart was on constant palpitations. More MRIs done and finally after 3 weeks, I am discharged on home medication and management. By this time I was trying to walk on a Canadian walker already.
A few days later, I was shaking uncontrollably and was having chills. The EMS brought me to the ER with a convulsive fever. Another set of CT Scans, MRI’s, Lumbar Puncture, Blood tests and Urine tests were done. This time I lost my bladder and bowel control already and was put on foley catheter. It was the worst experience ever that feeling your bladder is bursting but you can’t pee and its overflowing inside already. I got admitted again for 3 weeks.
After transferring rooms from 5 North 1 to 5 North 3, a few days after I was shifted to the Medical ICU because of prolonged seizures known as Status Epilepticus. On the 2nd seizure event, my oxygen level was dropping (according to what I heard from my ICU nurse) so they had to intubate me until I fell into a coma for a few days. I was in and out of coma and ventilator for a week and whenever I wake up, I would try to remove the ventilator tubes and NGT feeder because of so much pain.
A week in the ICU for seizure monitoring and symptomatic management, my neuro team decided to shift me to the neurology ward for Video EEG monitoring. 2 days into the room, I got another seizure but it was relatively minor and controlled. I was still on Foley catheter when I was sent home for out patient monitoring and check ups.
I started with the walker again but after a few days, my Physiotherapist said I could use the Forearm Crutches already, and so I did. Four days after my 2nd hospitalisation, I was burning up with fever for 4 straight days so I was brought to the hospital again but was sent home 12 hours later for home management and antibiotics treatment.
I started with the Occupational Therapy in Qatar Rehabilitation Institute November of 2017 and then Physio Therapy on December 2017. During one of my sessions in the occupational therapy, I started feeling so weak and very cold, seizing continuously. I was brought to the hospital again but denied any treatment as my seizure medications are already too high so they could not do anything. I was sent home 8 hours later.
During these times, I have wanted to end my life a lot more than I can imagine. The pressure of being able to walk again, the loneliness and hassle of being on to a wheelchair and walker and crutches for a long time. Having to depend on people to go around places. It seems like the days are so much longer than I can bare. Having experienced pain all over your body that makes you tired and couldn’t sleep. You could just imagine the pain I was going through, not one doctor understood the pain.
My mom sacrificed her time and effort taking care of me while we were the only ones (as a family) there in Qatar and every time I got seizures, the hospital would call her and come rushing from the office to the ICU. People did visit me and I’m glad that the Filipino community is giving me all the support I needed. Eventually I met other people from different walks of life and different nationalities. One of my ward mate whom I was very close to when I was still in 5 N 3 was Nadeen Shameem, a British woman who I always talk to in the ward. Her sister, Claire Weston, visited me and took that lovely picture of me and my mom in the ICU.
A more than a month stay in the hospital also gave me the chance to meet this lovely mother and daughter who became my dear friends. Tita mama Nada and sissy Doaa Jamal are Ahmed’s family. They were good enough to lend me Ahmed’s wheelchair to use for the mean time.
I was doing better and better everyday with the therapy.
Tiring first session with the OT. But I enjoyed it. OT teaches me how to do activities of daily living, modifying what I can do so that we will avoid stress to my body.
I started my Physiotherapy beginning of December when I’m already on crutches. My doctor also added a Hydrotherapy session, and I believed it helped me a lot. Mind you that all my therapies in Qatar were shoulders by the Qatar Government as part of their healthcare system but only if you have the health card.
I was doing well with the physiotherapy when one day, after the treadmill (with harness), while I was waiting for my ambulance ride home, I suddenly did not feel so good so I asked for a bottle of water. As we were on our way out of the Neuro PT Gym, I couldn’t walk any longer so they had me sit down a chair. When the EMS put me on the stretcher, I was shaking, I couldn’t open my eyes, I couldn’t swallow my saliva so it was all out of control. I couldn’t move my body voluntarily, nor respond verbally.
I was then brought the ER where I was confined at the hospital again for 5 days. They ran some tests but did not do the MRI at the onset of my symptoms. 5 days after my stay at the hospital, I couldn’t walk on my own anymore so I was on a wheelchair.
Because the doctors are all having contradicting statements, my mom has decided to bring me back to the Philippines for a 2nd opinion despite my therapies there in Qatar. Also that the staff from the hospital are also advising us to seek help elsewhere since the doctors couldn’t arrive at proper treatment plans as my condition keeps regressing.
Me and my Mom flew home to the Philippines, bringing with us my wheelchair as I still couldn’t walk long distances. I left the PT gym with only 3/5 bi lateral power on my legs and my balance is almost nonexistent.
A post from my Facebook as I wait for my fly date:
“My life is a mess right now… I have no money, no work; I am sick with unfamiliar rare conditions that I have to live with… couldn’t work, couldn’t walk on my own, constant pain all over my body, constant battle with mental breakdowns, sadness that overwhelms when I’m alone… I may not have cancer, but what I have is equally debilitating as it gets worse and my body gets weak every single day. In time I may not have the same ability as I have now as I can feel the difference everyday. I am not the same as I am yesterday, and may not be the same tomorrow. I wouldn’t acknowledge it and won’t probably accept all that’s happening right now but I get up everyday hoping that I will be ok enough to enjoy the day as a blessing.
People battle with their own demons everyday… some of us have far more difficult battles than an average person, a healthy person battles throughout their days… some far more worse.
As much as we want to love ourselves, it’s the weakness that gets us to overthink of things.
Hopefully all things would go well for me the first half of this year… from diagnosis to recovery to being able to live a normal life as I want to be able to go back to my sports and hobbies. I would hope to get myself together and be back to my own two feet as soon as I can. Thank you for sending some love, inspirations, concerns and encouragements.
Thank you to my Doha dragon boat family for being there for me during my hospital stay, helping me get in and out of the boat during sessions and being with me on my good and bad days, visiting me at home and all.
As I prepare to go back home to continue my medical journey, I couldn’t help but think of the best and worst possible outcomes. But really, I wouldn’t know what the future holds for me. All I know is that I have people around me supporting me each and everyday of my struggles. See you soon Pinas… no more hiding. 😂
The sun sets as the moon rises to shed some light to the darkness of the night.”
I had a check up at Makati Medical Centre with a Rheumatologist first but we were advised again to see a Neurologist. We went to out Neurologist-Psychiatrist doctor in St. Luke’s Medical Centre in Quezon City for another round of work ups. Mind you that we could’ve gone to whoever doctor but we really had no choice but to seek help from specialist and top of the field that my condition is under. My Neuro is a specialist on y condition and yet, we have only been able to arrive at a partial diagnosis. I was confined in the hospital for 3 days for the work ups and observations because my condition is very symptomatic. It could flare up at any time.
I need to have the initial treatments at UST Hospital while the doctors diagnose whatever it is that I have. Initial diagnoses have been given and my family has exhausted all our resources just from the first hospitalisation and initial treatment.
This journey has been exhausting for me since nobody could ever tell me what’s really going on and I have had my body drained of blood, subjected to radiation, and I felt like a lab rat for having one of a kind debilitating disease. Please help me find hope and to be able to surpass this ordeal as I want to be able to run and walk-on my own again.