When I got news that they wanted to take out most of my pancreas due to PNETs, I didn’t understand that this meant an almost automatic removal of my spleen as well. The splenic artery provides blood flow to the spleen, and it runs along the top of the body and tail of the pancreas, so typically they end up having to remove the spleen too. I wish I’d known back then what I know now and asked them, begged them, to do a spleen preserving surgery instead.
The spleen is such an interesting organ, about the size of a fist, located in the upper left quadrant of the abdomen. The red pulp inside of it filters the nasty’s out of the blood and the white pulp matures white blood cells that help to fight infections. That’s the super basic explanation. If you’re like me and want to know every freaking detail about the spleen, I suggest starting with this article. It’s quite profound, all of the actual functions the spleen has, not just for immune function but also metabolic function and even endocrine function!
There are also articles that describe a possible link between being asplenic and diabetes!
Asplenic patients are woefully underrepresented in medical literature. I can’t find much information about how asplenics, in particular, deal with certain things. I can find lots of stuff about what the spleen does, but not many things that happen in the body when it is missing, like for example: it’s said that immunity from vaccines and even natural immunity from viruses isn’t as robust in people without a spleen. This is an area that I think is only starting to be looked at a bit closer thanks to passionate asplenics who are pushing to have this type of thing explored.
So today, I will write about what I believe most people are concerned with: life changes I’ve made living without a spleen. Until writing this, I didn’t really realize how many little things I’ve become aware of over the years. I think belonging to some online support groups where people are legitimately worried about gardening or having pets has made me keenly aware that I may have been slightly aloof about missing this organ, but that being said, I think living in fear is a horrible way to exist. I would rather die than be holed up inside my home and be afraid of living my life to the fullest, as I’ve seen people do over the past few years. So I really hope that by sharing my life of nearly 17 years of living without a spleen that I can help minimize the fear that some people experience.
1. Platelets:
The spleen is where the platelets are stored. These platelets are sent to any part of the body that needs repair. They stick together and form a barrier to promote clotting and wound healing. When you don’t have a spleen, they float freely throughout the body instead. High platelets in the blood can be a cause for concern because they can lead to blood clot formation. My blood work shows that my platelet levels are often very high, even after all of these years they still go up into the 600s sometimes. I was told to take baby aspirin every day to prevent blood clots. Again, I did this for years, blindly following allopathic advice, until I read some studies about how dangerous this can be for the cardiovascular system and especially for someone like me that also suffers from Zollinger Ellison Syndrome (ZES) and makes too much stomach acid, leading to bleeding ulcers. So again, diving into the research, I found where they did studies on a natural substance that can make the platelets less sticky and less sharp, reducing inflammation (again, this is always my goal anyway!), and thus making the platelets less likely to clump together. What a cool study, I don’t know how they discovered that the slimy stuff that coats the tomato seeds, in concentrated form, can reduce the stickiness of the platelets. So I started taking 2 gel caps a day, containing this stuff and omega 3 oil. I got some blood work shortly after taking this and my platelets went from 699 to 295! This is the first time in nearly 17 years that they’ve been in the normal range!
Going to find the references for this study, I came across the results of another study they did on this concentrated tomato stuff that also shows benefit for the gut and the heart and other interesting findings:
"Fruitflow® significantly decreased fasting blood and urine TMAO levels when compared to baselines. Plasma LPS levels also decreased, this is a gut microbiota-derived factor that has been linked to chronic inflammation-related diseases such as obesity, type 2 diabetes or non-alcoholic fatty liver disease (NAFLD)."
2. Increased risk of sepsis and other bacterial infections:
Being asplenic means that I’m immunocompromised because the spleen is what helps fight off encapsulated microorganisms. Septic shock is probably the scariest thing that can happen to us, that is why we need to take some things more seriously if it puts us at higher risk for this. In some cases it can happen so very quickly, being fine one moment and in dire straights the next. The body can become overwhelmed if it doesn’t have the proper tools to fight some of these pathogens. So don’t live in fear, but be aware that these exist.
There are a few groups online, like the globalsepsisalliance.org or sepsis.org that outlines certain precautions we can take. For example, taking an antibiotic no later than 1-3 hours after an infection starts to get serious. For a list of their recommendations, you can check out their websites or search for your country and the word sepsis to find a local organization.
3. Vaccines:
The vaccines I received after my surgery included Meningococal and Pneumococcal vaccines. Each country has their own guidelines for the spleen kit vaccines. These should be either boosted every 5 years or titers for these should be drawn to make sure the body is capable of fighting these diseases.
I’m also very weary whenever I get a sore throat, especially if I hear that strep throat is going around because these types of diseases can quickly overwhelm the immune system and lead to sepsis.
For a quick overview of what the scientific literature says, here’s an excerpt from the NIH which every patient without a functioning spleen should read:
"One must understand and appreciate the various etiologies and potential complications of asplenia, such as being a great risk factor for encapsulated microorganisms. Bacterial infections with Neisseria meningitides or Streptococcal pneumoniae, among many others, can become life-threatening if untreated in patients with anatomic or functional asplenia.[5] Patients without a spleen have a 200-fold greater risk of death from septicemia compared to those with an adequate functioning spleen. There are many case reports in the medical literature reporting of asplenic patients, unfortunately, succumbing to infectious disease leading to death. One notable example reported by Heubner ML et al. (2015) described the rare case of a patient who had required splenectomy due to refractory immune thrombocytopenia (ITP).[6] He subsequently developed a pneumococcal meningitis infection and died despite best supportive efforts. The rate of invasive bacterial infection and mortality in asplenic patients is significantly higher compared to normal controls – 69% in meningitis, 64% in septicemia, and 7% in Purpura fulminans.[5]"
4. Antibiotics:
I have heard from people living in the UK that the NHS there is recommending that individuals with no spleen take a daily antibiotic, prophylacticly. At least for the first 2 years when infections seem most likely. This is not standard practice in North America. This is where I’m really glad I’ve never had to do this because I’ve researched the gut microbiome and believe that if a person heals their gut and has a robust microbiome, they should not have to take a daily broad spectrum antibiotic that would kill off the good bacteria in their body. This broad spectrum oral antibiotic will kill certain good bacteria that can take up to 4 years to build back, that’s after a single course of these antibiotics! New research is coming out all the time that shows the benefits and importance of a healthy microbiome for a strong immune system! Be aware that antibiotic use can lead to getting sick more often and even things like SIBO and constant reinfection of C-diff. I also try not to use anti-bacterial soaps or hand sanitizer (unless of course there’s no soap and water available) because these can also kill off the healthy bacteria that act as a first line of defense against pathogens. This is an area that again seems under researched by regular doctors. I feel like everyone just wants to go scorched-earth and sanitize everything when that only leads to greater, more resistant bacteria! Just wash your hands, a lot!
Some people are given antibiotics to have on hand in case they develop and infection. I was not, but was told to just go to the emergency room if in doubt.
5. Fevers:
Fevers need to be taken seriously. If you have a fever you should call your health provider and remind them that you do not have a spleen and ask for advice. I’ve had 3-4 fevers in nearly 17 years and ended up going to the emergency room 2 of those times to be monitored. Fevers mean that your body is fighting off something and sometimes it’s just better to be safe than sorry because sepsis can occur very rapidly in certain situations. Every country has it’s own cut off for when to go to the hospital. I believe the cut off is typically 100.4°F or 38°C or above but it’s best to speak to your doctor and make a plan so you know what to do.
6. Travelling:
When travelling, I like to research where I’m going and if there are any diseases I should be aware of. I’ve travelled to Mexico twice since my surgery and received a few vaccines before going. I also made sure to plan out all of my transportation ahead of time and stayed in resorts known for cleanliness. I never drank the water or even brushed my teeth with the water. On the plane, I bring a tiny package of wipes to disinfect the tray and other surfaces I might touch. We must be careful when it comes to things like Malaria, even with prophylaxis it might be safer to avoid places that carry this disease. Another thing is ticks can carry Babesiosis, so be careful when walking in long grasses in areas where these ticks can be found. Some people tape their pant legs and socks up to prevent tick bites. This sounds a bit extreme but so does contracting one of these weird diseases without a spleen. Where I live, we do have ticks and mosquitoes so I just wear long pants and hiking boots when I’m out hiking. And I use bug spray on my clothes.
7. Hospital waiting rooms:
When I’m in a waiting room, especially at urgent care, I will talk to the triage nurse and mention that I’m asplenic so that I wont have to sit in the same room and possibly be infected by some unknown pathogen. I really only do this if people are coughing around me.
I will also avoid meeting with a friend if they’re sick. It’s just polite to tell your friends if you're sick!
8. Pets:
I have 2 large dogs, of whom I feed raw dog food. Preparing raw food for them is no different that preparing chicken or any raw meat to cook for my family. I keep my work spaces clean and wash all dishes with the sanitization setting on the dishwasher. I’ve never had any issues, even when my dog accidentally nipped me, I cleaned the wound really well and never developed an infection. I have heard of someone developing sepsis and passing away from a bacteria called Capnocytophaga canimors, a bacteria found in the dogs’ saliva. The article mentioned that this person may have been a smoker which likely increased her risk due to higher levels of iron. I also know of people that have been around many different animals (as have I) with absolutely no issues at all. I guess it all depends on your comfort level. I always wash my hands before I eat and especially after playing with my pets.
9. Gardening and outdoor things:
Some things I never even thought of being weary of until I saw people posting questions online about them. So I guess we should be aware that there are bacteria everywhere, and the soil is a place that has bacteria as well of course. I’m careful when opening up a new bag of dirt, because of something called legionnaires disease, which can be found in water droplets inside there as well. But man, the things I've done when I look back and thankfully nothing has happened: I’ve cleaned up mice infested outbuildings, I fell one time on a nail that punctured my hand when the construction company was building the house next door and had debris all over my yard. I fell this summer and hit my head on a rock and had lacerations all over my head and elbow from that. Lol. Life happens. I’m not going around and avoiding things, but I do make sure I properly clean up any time I get a cut. The nail in the hand and the dog nip made me aware that I should be keeping my tetanus shots up to date, but I did not panic. I cleaned it, put topical iodine on it and watched it very closely.
10. Food and food preservation methods:
When I was pregnant, I had to avoid certain foods, so there are some things that I’m aware of now, like things containing raw eggs that I probably won’t eat now. Some people are afraid to eat out at restaurants after spleen removal! Well, that’s not been on my radar, except maybe this one time I shared some raw fish with my husband…I kind of wondered if anything bad would happen, but I was totally fine. I always make sure to wash my produce really well, you just never know what has touched it. I’m a bit more weary of food that isn’t cooked to the proper temperature, or maybe food left out and not refrigerated properly but honestly I’ve never had an issue with food. The only thing that sketches me out is home preserved foods. I learned how to can with both a hot water bath canner for acidic foods and also a pressure canner for everything else. I am really anal to make sure that the proper procedures are followed (for example, never leave the rings on the jars after canning) and if anything looks even remotely off, it gets tossed. Sorry to my friends reading this, just do it by the book please before gifting me grandmas canned green beans!
11. Water:
We don’t have the greatest water. Honestly, tap water runs through so many lengths of different pipes to get out of the tap, by the time it’s coming out of there, who knows what is all in it? I’ve chosen to buy a Berkey water filter, just to filter out the weird stuff. My water tastes amazing doing it this way. I use the same water to cook with too. It’s just one extra thing to protect my body.
Conclusion:
So in conclusion, when I read people’s concerns about living without a spleen, the thing I’m seeing 99% of the time is concerning the immune system. Yes the spleen is incredibly important for the immune system, but it isn’t a vital organ. This means that you can survive, and thrive without it! Your bones are still making blood cells in the marrow. T cells are transported to the thymus to mature, and B cells are transported to the spleen AND the approx. 500 lymph nodes all over your body to mature. So although we no longer have the spleen, the largest filter of the blood in our body, the lymph nodes are basically like mini spleens all over the body that can still do most of the job! The liver takes over the rest of the work filtering out more toxins as well. This is why it is important to eat clean so that your liver doesn’t have to work even harder picking up the rest of the toxic load that the spleen used to do.
I really hope this helps, thank you for reading and please do not live your life in fear!
A fantastic summary Amber. Thanks for your awesome explanations and examples. And for sharing a little more about you and your journey. It’s all greatly appreciated.
Debbie Strate