Hereditary Spherocytosis and Antibiotics

Note: The approach to preventive antibiotics after splenectomy differs between countries, hospitals and individual patients. This article describes only my personal experience and should not be interpreted as medical advice.

Everything in this article is based solely on my personal experience. It should never replace professional medical advice. Always discuss your health and treatment with your doctor.

When I was 10 years old, my parents and my doctors decided it was time for me to have my spleen removed because it had become significantly enlarged. The surgery itself is a story for another article, as it deserves one of its own.

After my splenectomy, I was prescribed long-term antibiotics, which is common after this type of surgery. I took a penicillin antibiotic called Penclen twice a day, every 12 hours.

As a child, I tolerated the medication very well. Whether it actually prevented infections is impossible for me to say. Maybe it did, maybe I would have been ill more often without it. There is simply no way to know. At the time, my parents followed the doctors’ recommendations, and I think that was the right thing to do.

At first, the tablets had to be crushed because I couldn’t swallow them. Later I learned to take quarter tablets, and eventually whole tablets as I got older.

Like many teenagers, I slowly became less disciplined. Sometimes I forgot to take my medication. Sometimes I took it hours late. Looking back, that’s probably not unusual for a teenager.

As I got older, Friday nights often meant going out with friends. I’d take my antibiotics before leaving… and then spend the evening drinking alcohol. After a while, that started to feel strange to me. I couldn’t help thinking that I was trying to protect my body with medication while, at the same time, I wasn’t exactly treating it very well.

Then I remembered something my haematologist at Motol University Hospital in Prague had once told us. He followed me throughout my childhood and teenage years, and I will always be grateful for the care he gave me.

I remember him mentioning that some people eventually stop taking preventive antibiotics once they become adults. That conversation stayed with me for years.

One evening, I simply decided not to take the next dose.

Honestly, I don’t remember noticing any dramatic change afterwards. I was ill fairly often before I stopped taking antibiotics, and I continued to catch colds afterwards as well. If anything, I have always been more prone to infections than most of my friends, and when I do get ill, I usually need a little longer to recover.

To me, however, the most important part of this story is something else.

Stopping antibiotics felt like telling my body, “From now on, you’ll have to deal with this on your own.”

Of course, I wasn’t making life easy for myself. Like many young people, I went through a period of parties, alcohol, smoking and not always making the healthiest choices. Looking back, I certainly wasn’t helping my immune system.

Today, sixteen years after stopping preventive antibiotics, I don’t personally feel that I miss them. Instead, I focus much more on the things I can control: eating well, staying physically active, exercising regularly, cold exposure, getting enough rest and, perhaps most importantly, taking care of my mental health.

I’ve learned that chronic stress, lack of sleep and constantly pushing yourself can have a huge impact on how you feel. Whether you have hereditary spherocytosis or not, looking after both your body and your mind matters.

Personally, I don’t regret the decision I made. It felt right for me, and fortunately I haven’t experienced any serious problems because of it. That doesn’t mean it is the right decision for everyone. Long-term antibiotic treatment after splenectomy is an individual medical decision that should always be discussed with your doctor.

I also continue to keep up with the recommended vaccinations, including pneumococcal, meningococcal and Haemophilus influenzae vaccines. I’ll talk more about those in a separate article.

I’m not telling anyone what they should or shouldn’t do. I’m simply sharing my own journey. If my experience helps someone feel a little less alone or gives them something to discuss with their doctor, then writing this article was worthwhile.

FAQ

Do all people with hereditary spherocytosis need lifelong antibiotics after splenectomy?

Not necessarily. Recommendations vary depending on age, individual risk factors and local medical guidelines. This article describes only my personal experience and should not be considered medical advice. Always discuss long-term antibiotic treatment with your healthcare provider.