asplenia has changed my life

Posted , 18 users are following.

I lost my spleen due to a colonscopy where my spleen was ruptured. I feel it has unfortunately changed my life in a negative way. I now live with anxiety, always worrying if a slight chill, a tooth ache, a slight cold, a headache, will it end up becoming an OPSI . I no longer own pets due to the chance of getting bitten or scratched and developing sepsis. I no longer garden due to histoplasmosis. I no longer hike in woods due to ticks and babeosis. I no longer enjoy travel, staying at hotels, are they clean? My hands are red from washing them. Going to the dentist and taking antibiotics to get my teeth cleaned and wondering if I will end up in the hospital,  No longer can get facial injections or botox (advised against it due to no spleen). Told to avoid salons to get my nails done due to potential of infection. Told to avoid public swimming pools due to germs. Told to avoid the beach due to birds droppings. Told to wear long sleeves and tick repellant in the summer, socks on the grass, avoid eating from buffets or picnics where the food may harbor bacteria if sitting too long. No longer go to friends homes who have dogs or cats because a lick from one on an open wound  may cause  sepsis. Every doctor procedure now is an issue. Do I need antibiotics to see an ENT?   if so for how long (I have colitis and antibiotics are not so good when you have colitis. I have a rare disease called Lyp and need biopsies once in awhile but now that is an issue of what antibiotic and how long. told to avoid crowds.  ALLL THE THINGS I LIKED TO DO, THE BEACH, LONG WALKS IN THE DOG PARK, DOGS AND PUPPIES KISSING AND PlAYING WITH YOU, GARDENING, ALL GONE. Am I the only one here whose life has been severely altered? Am I the only one living with anxiety. I feel I am one step away from a deadly bacteria. The vaccines do not work as well in asplenia patients as healthy people so not really reassuring. I am finding  it hard to adjust and to be honest, a lot of docs and dentists not really knowledgeable about how to protect asplenia patients. Maybe it is because there really is no way to increase our immunity and that is difficult for me to deal with.  

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  • Posted

    I just want to say that asplenia is no joke. Since having a splenectomy for reasons of blunt force trauma in 2018, I've had pneumonia 5 times, necrotic tonsillitis twice, cellulitis, a Covid infection that had a secondary pneumonia infection and turned into long Covid, and numerous bad colds. I've been hospitalized four times, had numerous trips to the ER, and had to learn how to give myself IV antibiotics at home.

    We are considered immune compromised and the Covid vaccine may not work as well on us, so please get your third and fourth shots if you haven't yet. I know that not everyone with asplenia has this much of a problem, but its still a big health factor all the same, and everyone should take proper precautions like masking and keeping emergency antibiotics on hand.

    Check in with your doctor if something doesn't feel right even if you don't have a fever. In my case, I was in the hospital with pseudomonas pneumonia for 8 days last spring, yet my temp never went above the 99s, so the thermometer can't be the only metric on whether to go to the ER.

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  • Posted

    19 years without a spleen. My life hasn't changed any. I'm never sick but have had issues with body absorbing vitamins and minerals requiring these daily. Please if you have lost your spleen. quit worrying! Go live your lives! I'm outside all the time, do farm work, lots of animals, never have had an issue. Besides when God decides it your time, it's your time. Accept that and you can do anything!

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  • Posted

    I lost my spleen over 25 years ago and lived my life pretty normal until getting a routine dental cleaning at age 50. I did not take pre-dent antibiotics and ended up with septic shock. I was in a coma for 2 weeks and nearly died. Now I take pre-dent for any cleaning and invasive dental work. I am more aware of people who are sick and stay away from them. But I still travel with back up antibiotics just in case. Life is too short and life is meant to be experienced !!! All the best to everyone here.

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