Emerging From the ‘Longest Bleed Ever’

Alliah Czarielle avatar

by Alliah Czarielle |

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Two weekends ago, my husband, Jared, had a lengthy bleeding episode. It happened after a fun Father’s Day trip to the zoo with our baby girl, Cittie, and our nanny.

We had a wonderful time filled with several firsts since pandemic lockdowns eased, including our first time out of the metro area in a year, Cittie’s first time feeding a giraffe, and our nanny’s first time seeing real-life wild animals. We just didn’t expect that our beautiful day out would be punctuated with an ankle bleed.

This injury seemed like the injury to top all injuries, the longest bleed ever, so to speak. But that’s just me exaggerating.

Jared’s had several bleeding episodes in the past that had far more debilitating consequences. He tells me that he used to spend two weeks in the hospital back when factor concentrates weren’t yet available in our country.

And how could we possibly forget about the cranial bleed that turned his life around? That life-threatening injury kept him in the hospital for months and caused him to have seizures that persist to this day.

This “simple” ankle bleed recently may not have been his longest bleed, but it certainly felt like it. We’ve been living a busy life lately, running our business and raising our baby girl. It gets stressful at times, but we also enjoy keeping ourselves preoccupied with things that constantly challenge us. Having a simple bleed last so long despite early intervention was extremely frustrating.

Jared says ankle bleeds are normally not debilitating for him. A previous ankle bleed was a piece of cake, relatively speaking. After infusing factor, he only had to rest for three days. In a week’s time, he was able to walk around the house and do chores as usual.

But this time was different. He bled into his right ankle, which is a target joint for him. Already ravaged by synovitis, his ankle became extremely painful and swollen. As a result, he was unable to get up from bed for over a week. He couldn’t even reposition his leg, because doing so would cause the pain to flare up severely. Worse, the opioid painkillers he was taking gave him horrible withdrawal symptoms as soon as he stopped taking them.

For two weeks, Jared struggled with feelings of uselessness. He felt bad that he couldn’t help with childcare and housework as much as he used to. I also couldn’t hide that I was feeling overwhelmed with the number of tasks I had to do. I had put off coloring my hair or even taking our laundry to the cleaners. Jared didn’t like that I was feeling this way, but there wasn’t much he could do.

Feeling unproductive for more than a week has serious mental consequences. The depression that follows a long period of self-perceived uselessness doesn’t always come up in conversations about chronic illness. Yet it is something that needs to be addressed.

In Jared’s dark mental state, he is cynical and impatient. He is hypercritical of the world and cannot stand society. While we’ve always bonded over philosophical conversations about controversial topics, during these times he can’t talk about these topics without becoming irritable and frustrated. He tells me he isn’t OK, and that he feels like he is getting sucked into a dark pit of depression.

The depression is also seemingly contagious. True enough, when people are depressed, they do not infect others in the same way that a virus is passed from one person to another. However, depression goes hand in hand with some negative attitudes and behaviors that may be transmitted to people in the sufferer’s vicinity. Partners and spouses like me are most susceptible to this phenomenon.

Thankfully, Jared was able to acknowledge that he was not in a good place for the time being. He told me to go ahead and do my own things, and that it was in my best interest to leave him alone to feel what he had to feel.

We’re now in the twilight of Jared’s longest bleed ever (not). Once again, I am reminded that there is an end to all suffering. Jared is slowly but surely regaining his leg function. In a few days, we’ll be back to moving in step with the usual rhythm of our shared lives.

Jared tells me he has managed a lot of introspection while bedridden. He wants to be more appreciative of the things he has, and more careful with his body, and he hopes to work hard to regain his old physique.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

Comments

Melissa E avatar

Melissa E

Hemo mom here. My son is grown now, but his inhibitor was horrible when he was young. I don’t know if they still do this, but he had two radioisotope synovectomies on target joints (knee, elbow) that worked immediately and well; no more target joints, even though he still had raging inhibitors for many more years.

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