We lost ‘A’ two days ago.
‘A’ was a special kind of patient. He was the first patient transferred over from the pediatric clinic. Unlike all the other patients in my clinic, ‘A’ was born infected with HIV, 19 years ago. He never saw his father for he had passed away before he was born. His father had passed the infection to his mother who then passed it to him when he was in her womb. She passed away when ‘A’ was three years old.
His aunt, his mother’s sister, adopted him and raised him as her own. He went to school like the other kids, with the only difference being that he had to take his anti-HIV medications at the same time, every day, from the time he was a baby. For a while he was fine as the medications suppressed the infection and kept his immune system working.
Puberty and the subsequent teenage years brought new challenges to him staying faithful to his medications. He started skipping his medications. He quit school. He started smoking.
By the time he was transferred to the adult infectious diseases clinic last year, he was on ‘salvage therapy’, and a failing one at that. The expensive medications that he was on did little to suppress the viruses in him for the viruses had developed resistance to every available anti-HIV medications.
I had spoken to him several times, in the ward and in the clinic. He was diminutive in stature, withdrawn, answering only when spoken to. But he was always respectful. I believe he kept a lot of things within himself, left unsaid. He had no aim in life. Day after day he stayed at home, doing nothing. He had no purpose in life, no interests to pursue and no motivation to live.
Early this year, he succumbed to tuberculosis that ravaged his lungs and lymphatic system. For a while anti-TB medications seemed to help and he became better. Then the diarrhea started. From several episodes a day, it became more than 10 times a day, leaving him weak and dehydrated. Not long after, he complained that he could not see clearly in one eye. A quick ophthalmology consult confirmed what we feared – CMV retinitis. A visually devastating viral infection that attacks the photosensitive layer of the eye causing irreversible destruction and loss of sight. The same virus was probably responsible for the intractable diarrhea that he suffered.
We tried staving off the infection through injections of anti-viral agents into his eye and through intravenous infusions. All these could achieve was to arrest the unrelenting destruction of the retina and improve his gastrointestinal troubles. Without effective anti-HIV medications, he could not hope to recover.His battered immune system had no chance to recover and fight any infections. I met him for the last time several days ago in the ward. He forced a smile when I greeted him and asked how he was feeling.
He said he was in a lot of pain. Every where hurt.
I had to make the heart breaking plan to withdraw his medications after discussing with his aunty and him together. The medications were not working anyway. We referred him to the palliative care team, hoping that he may find some respite.
The medical officer met his aunt the following day and explained to her our plan. She agreed it would be for the best. They had a talk with ‘A’ and he understood what it all meant. His wish was to be allowed home so that he could go back to his native state and visit his parents’ graves for the last time.
He never got his wish.
That afternoon, he suddenly deteriorated and breathed his last soon after. I think he gave up on living.
His demise affected me deeply. Every patient I lose affects me deeply. I feel we have failed this young man at so many levels. I think the whole system had failed him.
And the saddest part is, I fear this would repeat again and again when more of these HIV-infected young men and women transfer over from the pediatric clinic to the adult infectious diseases clinic in the years to come.