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.  

2 likes, 18 replies

Report / Delete

18 Replies

Next
  • Posted

    Hi, I really think that you are taking this spleen issue far to serious. The only real thing you must stay away from is Malaria areas other wise you can live life normal and just go for your numovac injection once a year. I lost my spleen at the age of 16 due to a cricket injury at school and I am now 33 and live life totally normal. Hope this eases your anxiety.
    Report / Delete Reply
    • Posted

      Hi Ryan, I would like ask you some Q about life after spleen removal, my spleen was removed few days ago, I worry a lot, since I found some articles about sexual disorders and decreased libido after spleen removal. Is something on that?? also I worry a lot about interactions with my kids and wife, can i hug them and kiss them and not constantly worry about catching some bugs? my wife also worries a lot, she is scared to kiss me, touch me and so, not to give me some bugs.

      thanks for your A !

      Report / Delete Reply
  • Posted

    I have been without my spleen for 26 years, I do all the things you worry about, life’s too short. 

    Forget what ifs, something will get us all in the end. 

    Report / Delete Reply
  • Posted

    I lost my spleen in 1998 and it was hugely traumatic. But it’s 20 years this year and its now part of who I am. The bottom line is a significant % increase in the chances of something very rare happening to you still puts it in the very rare category. If you don’t believe that ask an actuary - we do not get loaded for life assurance - we are not seen as “at risk” - we are still far more likely to die in a road accident or from smoking.

    You need to be cautious - mind your health, weight, hygiene etc & get vaccinations but it’s part of who you are, you can’t let it define who you are.

    Without a doubt it has downsides - for me it’s sore throats and abdominal aches but otherwise I live a normal life - and I never really liked pets anyway!

    Report / Delete Reply
  • Posted

    Hey...

    Lost my spleen November 2017, I'm 59, have had all immunisations , take antibiotics everyday plus multivitamin ..

    I still have my two dogs who jump on me lick my face .. have four young grandchildren , now that's where I coukd catch something , from kids , little bug carriers they are .. lol..

    My life style has not changed at all , except travelling overseas 😔..

    You can't spend the rest of yr life worrying so much , might as well lock yrself away & never venture out .

    Fact is we could stand next to what seems a very healthy person but they could be a carrier of one of the bad bugs we need to stay clear of .

    WE just never know ... 

    so I say just get on with life while you still have it .

    We just have to be that wee bit more aware , that's all ..

    Cheers

    Pam 😀

    Report / Delete Reply
  • Posted

    The exact same thing happened to me 3 weeks ago and I'm losing my mind with stress and worry. I barely leave my house and when I am in public I wear a mask to try to protect myself.  I have not gotten all of my immunizations yet because my doctor has spaced them out and I'm wondering if my anxiety will decrease once they're completed. I have a 7 year old son and we are now homeschooling him because of the huge risks of him bringing something home that could potentially be fatal to me. I'm sorry that you are having to live like this. It's definitely not something I'd wish on anyone. It helps to know that I'm not alone though. 

    Report / Delete Reply
    • Posted

      I hope that you can read what I wrote because there is a child who depends upon you isn't going to help you. You will be tired and you can just start new in the morning! There will be days you won't feel good, but it's no different then life with a terminal illness.Those people manage and so can you. You've not been handed a life sentence. You will take precaution as you should, but you can readjust your life to wearing a mask all the time! No need not to for the wellbeing of those around you. There's a life! Go to the games. Be vunerable and see that you can resume some of the things you thought you couldnt. Take the risks.

      Report / Delete Reply
  • Edited

    Oh wow...you sound like I felt, right after I had my spleen removed!  I had a full hysterectomy and my spleen removed within 6 months of each other last year (2017) because I have autoimmune hemolytic anemia that they had tried to stop for 2 years and failed.  With what I have, I already have no immune system to speak of,so that surgery just threw me into crazy land and total anxiety and paranoia for about 5 months...then I just stopped and thought....why?  Why am I so scared?   Don’t get me

    wrong, I still carry masks in my purse and I take 4000 mg of vitamin c every day, along with turmeric, vit d, folic acid, vit b12, multi vit, probiotic, calcium, magnesium, krill oil morning and night, a daily aspirin, cholesterol, and a scoop of collagen in one cup of coffee every morning to boost my immune system.  I dont go nuts over it, but I do avoid sick people and sick children, but if I happen to get caught in the room with one, I either put on my mask, sit on the other side of the room or just go outside till its time to leave.  I have 2 dogs and 3 cats and I refuse to get rid of any of my babies.  You do the precautionary things you can do and control and you leave the rest up to Gods protection.   I also bought a nedi pot along with the salt that I use every evening that works wonders with all congestion and allergy issues.  I take Zyrtec 3 times a week (Monday, Wednesday and Friday) and if I still need something else, I occasionally throw in a Musinex.   Try to relax...love your life, don’t be afraid of it, it s far too short to do that!  I turn 70 in October and I am still (despite all these surgeries they said would fix this) battling the autoimmune hemolytic anemia but I’m ok with it.  I dont want to die anymore than the next person but I’m also not going to spend the time I have left sitting in a sterilized house waiting to die...I extend to live my life to the fullest and I hope you decide to do that as well bbaker ...please....dont ever consider just letting it pass you by!!  Love and hugs coming your way!

    Report / Delete Reply
    • Posted

      Hi,

      I've been without spleen 12 yrs Dec.

      No need to be paranoid, be clean . Swim. Don't ignore symptoms anymore then you would ordinarily. I was told 5 yrs, because they took half my pancreas.

      Accept what you are and roll with the rest of us. The ticks, the dirt, the garden, the sand. All of it. The colds, those pens at the drugstore and dr. Offices everybody has to use. Clean is the way. Use the wipes, say the Lord's prayer while washing your hands in hot soapy water. Use antibacterial and bleach. Don't be afraid to push. GO WALKING! everyday, no matter what your health, it's a good day that your feet hit the flour.Maintain your immune @ 5 yrs, do the pneumoniccocal, shingles, and flu annual. Lifetime low dose Antibiotic daily if the need is there. Plenty of Dr's aren't to schooled, don't be afraid to teach them as time goes by because I've met ppl who are asplenic, and we truly are rare. Bloodwork every 6 mo.for life. Just Do it!

      Report / Delete Reply
  • Posted

    Don't allow the absence of an organ or two to snuff out your life. Go out and have some fun.

    2 drops Oil of Oregano messaged into the base of your spine will absorb into the bloodstream. That one act alone, every few days can keep you in fine running order. CARVICOL is the purest. I used it topically now but I've consumed it orally for over 12 yrs. I've been I'll and had multiple infection, however I don't use any vitamin etc., because I can't afford all on it. They actually thing probiotic and prebiotic's may not help the gut floura, which guard best against infections. Think about the way you eat and avoid sweets which build candida and other problems.

    Your stitches will disappear. You'll feel good again.

    Report / Delete Reply
  • Edited

    I have been without my Spleen for a year. I was worried for a short time, mainly because of all the stuff I read. My hematologist said to enjoy my life. I garden, swim, have a sweet cat no ticks in our area. I try to stay away from sick people. I have a cold or two. No different then before my spleen was removed. My advice is to relax, get lots of sleep, eat good and enjoy each day.

    Report / Delete Reply
  • Posted

    greetings, I am so glad that I ran across this. I lost by spleen seven days ago due to a bicycle accident. I did lots of searching on the Internet and most of it was all negative things. It made me feel like I had a 50% chance of living which is not true. I am still trying to learn a lot and it is good to hear some positive reads on this topic. I am 68 years old and was pretty fit with exercising a lot. Thanks and keep posting more positive talks and links.

    Report / Delete Reply
  • Posted

    Hi

    I don't know if anyone will see this.

    I have a littoral cell angioma in my spleen; a benign growth that is meaning I have to choose whether to keep my spleen (but risk it rupturing under the pressure of the slowly-growing tumour) or have a splenectomy to remove that risk but obviously introduce all of the risks associated with removal.

    I know having the choice might sound like a lucky position to some of you but im finding it really difficult.

    I'd love to hear real word experience of living without a spleen; have read the above with interest.

    I am 39 years old, have two children under 5 and enjoy a bit of sport (running, football [soccer]).

    Thanks 😃

    Report / Delete Reply
    • Posted

      Hi,

      I am three weeks post splenectomy and very happy with my choice. I had a mass in my spleen discovered incidentally during a CT for another medical procedure. I had been complaining of pain in the area for six plus years but my complaints had gone investigated. My physician had been doing multiple tests to try and figure out why my iron, D3, and B12 continued to drop even when I was taking supplements. I had an upper and lower GI the month before the mass was discovered and nothing was identified that might be responsible. They did remove a single polyp which was likely the cause of a fistula and abscess that developed requiring the CT that resulted in the discovery of the mass on my spleen

      Next came an MRi, a PET, and a bone marrow biopsy. None resulted in a cancer diagnosis but they did not rule out a cancer diagnosis either.

      I did quite a bit of research and asked a lot of questions and it turns out primary tumors of the spleen are very rare and solid masses account for even fewer of those that do exist; mine was solid and very large.

      Like you, I was concerned about the spleen getting even larger and rupturing; it was already huge according to the pysician. Ordinarily they would try and watch and wait but I was already having a great deal of pain and the spleen was suspected to be causing the anemia and low platelets so I chose to have it removed.

      I went in to have it removed laproscopically with the understanding that the surgery might be converted to an open procedure due to the size and location of the tumor. They were able to do it laproscopically with just one slightly larger incision for removal.

      The surgeon said he had never seen anything like it, that the tumor and damaged spleen had begun to attach itself to my diaphragm and other connective tissues in my abdomen which likely accounted for the pain I was having.

      The initial pathology came back as a benign littoral cell angioma (LCA), my spleen was partially nacrotic, and contained a large thrombus (clot).

      With additional research I discovered that it is impossible to determine benign or malignant LCA's without pathology, and that a spleanectomy is preferred over needle biopsies because of the possibility of uncontrolled bleeding. I also learned that even benign LCA's can convert to malignant LCA's and this tends to be true the larger the spleen becomes; spleens greater than 1500g and/or 20cm seems to be the one the convert to malignant. Mine was almost 800g and 16cm.

      I can already tell that the pain I was having previously will be gone. I will be back to work in another two weeks. I have had no post operative complications. With COVID-19 I have had some concerns but I had COVID-19 in January and have also been vaccinated so I do not feel at any greater risk than I would from the flu or streptococcus. I expect that I will be slightly more aware and cautious of environments and foods that might put me more at risk but I will not live my life in fear of getting sick. Probably will not plan any trips to areas where miliaria is prevalent.

      I am happy with my decision to have the speenectomy. My oncologist is 74 years old and this is the only LCA she has ever seen. My surgeon had never seen one either.

      Science actually knows very little about LCA's but they do recommend monitoring after a splenectomy because LCA's can be associated with malignant viseral tumors in other parts of the body that can appear even after the spleen has been removed.

      Hope you find something helpful in my experience

      Report / Delete Reply
    • Edited

      Hi,

      I know by now you have probably already made your decision, but just wanted to give you my experience of living without a spleen. Im 37, but had my spleen removed when I was 11 because of a blood disorder. I would say I have lived a pretty normal life. i do tend to get pretty sick when I get sick. Ive learned that the first sign of being sick, i have to get started on antibiotics immediately because i will get very sick very fast. But i dont get sick very often.

      i am a dental hygienist, so i am exposed to germs on a daily basis. This covid thing did freak me out, and i didnt work for a year because it scared me not having a spleen, but i was vaccinated and went back to work, and I did get covid, and was fine. i have 2 kids who will probably also need their spleens removed one day, due to the same blood disorder. Its hereditary and my brother, my dad, my grandfather, and my aunt all had it as well and they all had their spleens removed also and have all been living normal lives. It is our normal I guess you could say. My brother, who is 43, was 15 when he had his removed, and played HS and college football. I cheered and played tennis, and still workout regularly.

      Hope Ive given some interesting insight!

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up