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Life without a Spleen

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11 years 7 months ago #44100 by Aoi
Life without a Spleen was created by Aoi
A quick question for the asplenic folks here. My mother is about to have her spleen removed as a part of her cancer treatment. This is all happening very quickly, and I'm hoping folks here can simply refer me to some particularly useful sources of information on the subject.
Thanks.

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11 years 7 months ago #44110 by CindyL
Replied by CindyL on topic Life without a Spleen
Is there anything specific you want to know? I've been without my spleen since 2006. Not on anti biotics, not sicker any more than I was before I had it removed. I do try to avoid sick people but do live my life the way I want.
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11 years 7 months ago #44116 by Aoi
Replied by Aoi on topic Life without a Spleen
I suppose I'm looking for information on any lifestyle changes, from medication to nutrition or avoiding sick people, that become important after the spleen is removed.

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11 years 7 months ago #44125 by Ann
Replied by Ann on topic Life without a Spleen
General advice for people without a spleen is to see a doctor quickly if the temperature is high or you feel ill. Infections can take off very quickly in the asplenic so be alert to any illnesses.
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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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11 years 7 months ago #44132 by karenr
Replied by karenr on topic Life without a Spleen
My brother and I both have had our spleens removed--his in about 2000 because of leukemia, mine in 2004 because of the (futile) hope that it would put me into remission from ITP. We both consider ourselves quite healthy for people of our ages (he's 71; I'm 73). He plays tennis and is a practicing pediatrician; I swim and do a lot of water exercise and walking, and would be considered an active person.

I wash my hands or use hand sanitizer more than most folks, but I don't think the lack of a spleen has (so far anyway) had any adverse effects on my health.
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11 years 7 months ago #44147 by Aoi
Replied by Aoi on topic Life without a Spleen
Thanks everyone. Another question: is there a well-regarded book or other source of information for this situation?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 7 months ago #44149 by Sandi
Replied by Sandi on topic Life without a Spleen
I don't know of any books, all I know is what I have read over the years.

There are certain bacteria to be aware of. These are: Streptococcus pneumoniae, Neisseria meningitidis or Haemophilus influenzae type B (Hib). There are vaccinations to try to prevent these infections, and it's important to get them when they are due for the rest of the patient's life. Having the vaccines though does not provide full protection, so one must be vigilant.

The main problem as far as your Mom goes would be sepsis. Having a spleen removed does not mean that a person will get sick more often or catch everything they are exposed to. It means that if they do get sick, they can become septic very quickly. Sepsis has a fairly high mortality rate, especially for the elderly or immunosuppressed, so treatment must be initiated quickly.

These are the symptoms:

●Fever greater than 100.4ºF or 38ºC
●Uncontrollable chills and/or shivering
●Headache
●Drowsiness, confusion, and/or disorientation
●Nausea, vomiting, and/or diarrhea
●Severe abdominal pain
●Pinpoint purplish red spots on the skin (petechiae) or larger, bluish bruises
●Low blood pressure, lightheadedness, or fainting (syncope)
●Rapid heart rate

Fever is the most important one, and those without a spleen should be seen by a doctor if the fever goes above 100.4, even if it seems to be a minor respiratory illness.

I have heard stories of people becoming septic from the bacteria of an animal bite or digging in the garden without gloves. Apparently, bacteria can be present in dirt. When sepsis occurs, it's not a pretty sight. Limbs can become gangrenous quickly and amputations are sometimes necessary. I knew a woman on here who died within 24 hours of the onset of symptoms of an illness. She sought help but the antibiotics were not effective quickly enough.

Another risk for the spleenless is blood clots. For some reason, not having a spleen can cause clotting, so that is another thing to be aware of.
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  • Melinda
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11 years 7 months ago - 11 years 7 months ago #44150 by Melinda
Replied by Melinda on topic Life without a Spleen
Aoi I would talk with your mother's doctors - they are the ones who can give you answers. All the advice above is good - and most all of it is for those with a spleen too.

I'm really sorry your Mom needs her spleen removed, I hope all goes well and she does great [with the surgery and fighting that cancer]!

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11 years 7 months ago #44151 by Aoi
Replied by Aoi on topic Life without a Spleen
@Sandi: Thanks for all the useful information. My mother will get the three-way vaccine in a few weeks, once she's recovered enough from her surgery; I was in the room when they explained that to her.

@Melinda: I just met with them on Monday. They are incredibly busy and giving out a lot of information. I'm trying to bone up on the subject so I can quickly and accurately absorb what I'm told, then remind my mother as needed. Since she's having most of her pancreas removed as well, there's a lot to address.

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11 years 7 months ago #44157 by CindyL
Replied by CindyL on topic Life without a Spleen
Hope your mom starts feeling better soon!
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11 years 6 months ago #44657 by Kharys
Replied by Kharys on topic Life without a Spleen
I had my spleen removed 22 years ago when I was first diagnosed with ITP. I get regular flu and numavax shots. I haven't been ill more often despite having young children at home who bring everything home with them from school.
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11 years 6 months ago #44701 by Aoi
Replied by Aoi on topic Life without a Spleen
Thanks for letting me know. My mother does enjoy seeing her grandchildren.

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