April 13, 2013, 2:15am
I am awakened by a sound, soft but steady. It sounds like a puppy mourning in pain. I saw my husband sitting on the edge of the bed, holding his left wrist in his hand. The bag of ice I had strapped to his wrist earlier, now lay on the bed, a bag of water beside him. I immediately got up, knowing that he needed me, but didn't wake me up because of his manly pride and humble consideration for my own need for sleep.
After I strapped a fresh bag of ice to his wrist, I held his head against my belly to comfort him. I thought about the fact that his country refused him treatment over and over again in an attempt to cut cost. What my husband needs, and all other hemophilia A patients in Suriname is a shot of clotting factor VIII. The last bleed, before this one, was last week. He had gone to the country's health insurance office in an attempt to get some help. Thankfully he received a shot of 'human' clotting factor.
The doctor, who is head of the insurance company explained that the 'human' clotting factor is cheaper so this is what he can give him. Let us close our eyes to the fact that human factor is not 100% safe (my husband could very well inject HIV or some other fatal disease into his blood stream); but it is 'cheaper' so let's take the risk and save some money. The doctor went on to inform my husband and gave him a referral sheet to do a sonogram before contacting him again for treatment. Little does the doctor know that a sonogram cannot show a bleed. Yet the word of a man who has been hemophilia for over 30 years is not evidence enough to explain the swelling and redness at his joints.
With his head pressed against my belly. He mourns in pain as the ice cramps into his flesh eating away the nerve endings, making him less aware of the pain of his bleed. I gently rub his head. I look down on his knees, already big, swollen and deformed from the many bleeds that ate away his cartilage. His wrist, now another challenge we must get through.
I cannot let him see me cry. I must be strong for him. But I cannot stop the tears from springing to my eyes... quickly I wipe them away before it falls on his head and alerts him that I cry. I start to hum a familiar song, turning to my faith in a higher being to help us now.
The nerves in his wrist are numb from the ice. He puts his head against his pillow and quickly falls asleep. I am relieved, for now, but the bleed continues in his wrist swelling it up like a balloon being inflated. I stay awake to refresh his bag of ice as need demands - I cannot afford to let the pain return.
Yet the pain lingers...
The pain of people suffering from or influenced by bleeding disorders in developing countries all over the world.
I am a hemophilia wife... I am married to this disease.
Help me speak for it.