Anyone out there without a spleen ?

[Patchworkpatty]

Anyone out there living without a spleen. ? Either through illness and having it removed, rupture or born without ?

Yes. Can I help?

I think I only have spleen 'tissue', it's never been confirmed though so might have no spleen, but am rarely ill.

My DD had hers removed ten years ago after an accident. She takes penicillin daily, and has an annual flu jab, but other than that, no difference really.

Hi there fellow non-spleeners . So lovely to hear from other people with slightly unusual medical situation.

I really wanted to ask a couple of questions .

1. If you are an adult, do you take Penicillin everyday ? I did for years , then the protocol changed.. then changed back and forwards again several times. Where are you all at now ?

1. Do you get 'bugs' very often where temp gets a bit out of control ? I have had this a few times leading to pneumonia three times in last 4 years.. also terrible sinusitis that require IV antibiotics.. anyone else get similar.. ?

1. Where do you think we stand with covid virus ? Any more risk than general population, seeing as our problem is with bacterial infections rather than viruses?

Many thanks.. not had mine for 31 years following a blood disease at 25.

@patchworkpatty I had mine removed 25 years ago and have been on daily penicillin since then.
I have queried the long term antiobiotic use and the docs said that I could come off, but would need to go back on when I turned 50 as my risk of infection would increase at that point.
I don't think I get more ill than anyone else, but I am paranoid about fever.
I suspect with coronavirus, we'd fit into the immunocompromised category?

Hi Ida, great to hear from you . The penicillin thing is interesting. As I am over 50 by 6 years I think I better chat to the GP !

I know they were pretty adamant about my risks increasing after 50. I think to be honest they have limited long term info on risks.

The year before I had my spleen removed, the official recommendation was to be on antibiotics for 2 years post-op, but they were finding that people were getting serious infections both in that 2 year post-op window and about 20 years later too, so they changed it to lifelong antiobiotics instead.

(caveat: this is just what I have been told by docs. I haven’t checked it)

I had my spleen removed about 10 years ago. I was on antibiotics for about 5 years but asked my doctor if I could come off them and haven’t had any after that. I had my tonsils out a few years later and have actually had fewer coughs and colds since then. Apart from an annual flu jab, I don’t have any medical follow-up.

Travel insurance is £££ though!

I also had my tonsils out SeasonallySnowyPeasant , along with gallbladder and appendix in the 10-15 years post op. However I guess that's related to the original reason for Spleen removal (mine was an autoimmune disease called ITP) and since then I have gained and under-active thyroid, IBD, Raynaud's Disease, Restless Legs Syndrome (really annoying !) and chronic Sinus inflammation. (My latest illness de jour). Pretty much all autoimmune as well.

Thanks IdaBlankenship many thanks for the heads up re 'over 50' . I was unaware of that and I will make an appointment today based on your info, to go and discuss going back on Penicillin. I will also ask what she thinks of our 'risk' for the Coronavirus is compared with the rest of the population.

My daughter had hers out recently because of ITP. She's not on any medication now although she still has to have regular blood tests to check her platelets level.

When she went for her flu jab the nurse turned her away as they were only doing priority vaccinations at the time. I was really shocked as I thought having her spleen removed meant she was a priority. She had to pay to get it done instead. Is she high risk?

@MashedPotatoBrainz I'm surprised your daughter isn't on the list. I am on the flu jab list and have to have regular meningitis and pneumococcal vaccines also (one is every 3/4 years from memory and the other is a longer timeframe).

So am I, which makes me think the nurse was wrong. She had extra vaccines at the hospital when they removed her spleen and she's pretty sure the dr said she must get the flu one each year. But then the nurse said no as she's not on medicine which reduces her immunity. The NHS website clearly states get it done if your spleen is removed, but the one for our health service (Sweden) only says get it done if your immunity is compromised, but doesn't specify conditions.

i've just found a Swedish website that confirms it. People with no spleen are high risk so get the vaccination for free. It also says that close family member should get it for free too. Quite cross now as we've all had to pay to get it done.

Is she not on antiobiotics then? Perhaps the thinking has changed - I know that in some countries they only give them for the first 2 years still.

No, she's only ever been on steroids. The spleen removal was so she could come off them.

I am pretty horrified by your daughters experience MashedPotatoBrainz . The lack of spleen is a compromise of the immune system. I was given a card to carry following my splenectomy 30 odd years ago. ! It says . 'I have no functioning spleen (haha I have No spleen full stop) I am susceptible to overwhelming infection including Sepsis & Pneumococcal .

People without a spleen have a problem regulating there temperature when they get an infection. Especially 'encapsulatedI bacteria ' must have been in hospital 30 times over the years for various infections like tonsillitis/sinusitis etc.. anything with a high temp (39+) .. a chest infection if not caught in time has turned into pneumonia 3 times in last 4 years. Flu could be really serious and I can't believe any health care professional would put your daughter at such risk..

This from the ITP association.

What are the risks*
There is an increased risk of infection after splenectomy and any fever or infection should receive urgent medical treatment. Vaccinations against hepatitis B, pneumococcal infections, meningitis and hæmophilus influenzæ,will be given before the splenectomy is carried out, or immediately afterwards in the case of an emergency splenectomy. Asplenics (people without a spleen) in the UK are advised by the Department of Health to take antibiotics for life, but in many other countries a standby dose of antibiotics is issued to carry at all times and take at the first sign of infection.
What about children
Children rarely have a splenectomy unless their ITP is particularly troublesome, as most recover from ITP, and the risk of infection without a spleen is far higher until the immune system becomes fully developed in teenage years.

I'm going to give her a list of questions to ask at her next check up. She's an adult but is autistic so isn;t great at communicating and asking the right things.

My brother had his spleen removed after having hodgkins . He has to take daily penicillin tablets, but has no problems. He has injections for various things annually such as the flu jab. He keeps very well.

Ha @Patchworkpatty I have that little pink card too (it’s very dilapidated now)!

How are you all feeling, now that we made the At Risk list? Are you self isolating?

Hi, I'm 40 and no spleen since late teens. I'm struggling to find specific advice for those no/partial spleen via NHS online or tel. 111. So glad I found this thread on mumsnet!

This BBC article www.bbc.co.uk/news/health-51703892 lists no spleen as being a vulnerable condition. I've read separately too that the NHS is to start contacting specific high risk groups of people to give them isolation advice from Monday 23rd March. But looks like this won't include splenectomy patients: www.nhs.uk/conditions/coronavirus-covid-19/ Scroll down to 'If you're at high risk' and click on the blue 'who is at risk?' link.

Meanwhile a friend told me tonight her husband's team were called into work meeting (he works for local government authority) and staff with ANY of the vulnerable conditions listed on BBC article (diabetes, high blood pressure etc.) were IMMEDIATELY told to go home and isolate for 12 weeks..

I work for a different local authority and we've so far heard absolutely nothing via management or HR.

I don't know what to do? Any suggestions anyone? I'm a single parent and feeling pretty lonely right now, unsure who to speak to/what I should be asking my work?

My daughter is a teacher so I'm worried sick about her. Schools here aren't closing yet. Yesterday she told me she was starting to feel ill, but thinks it's stress because of the stress they're all under plus her own personal fear.

I think part of the fear is the confusing, mixed information we're seeing. The UK says that she is high risk. But she spoke to her consultant about it here in Sweden and he said she's at no more risk than anyone else. He said viruses aren't a risk for people who've had their spleen removed. The risk is bacterial infections.

I understand that bacterial infections are the major risk post-splenectomy, however you are more likely to come down with a bacterial infection if you immune system is already taking a battering from a virus. Thereby making your bacterial infection the "secondary" infection to the primary viral infection.

I read it therefore that the guidelines apply to patients who have had a splenectomy due to the risk of these opportunistic secondary bacterial infections taking hold - not having a spleen doesn't increase the risk of virus severity per se.

I am self isolating as the advice isn't too clear & I'd rather be over cautious. That's reassuring to hear about a lack of spleen not making you more vulnerable to viral infections.
@yorkshirejo can you talk to HR? Splenectomy patients are specifically listed, so I would always err on the side of caution. Are you taking antiobiotics daily?

@IdaBlankenship - one has to be careful however in thinking that viral infections are less severe: we know very little about covid-19 and research is in it's infancy. I would absolutely urge those without spleens to err on the side of caution until we know more.