Regular Just Frances readers will know that I have a rare bleeding disorder called idiopathic thrombocytopenic purpura (ITP). But what they may not know is that I don’t have a spleen as a result of it. Not because there was something wrong with my spleen, but rather because (sometimes) a splenectomy is seen as a viable treatment for ITP.
Please note: I am not a medical professional. This post is about my personal choice (or lack of choice) for a splenectomy, as well as my personal experiences of and thoughts about life post-splenectomy. It is not meant to serve as medical advice and is not intended to encourage or discourage a splenectomy for others with ITP. However, I do hope that it will help others to think through their options – preferably with guidance and input from their medical care providers.
Making the decision
It has been a little over 20 years (April 1996) since my spleen was removed; I was just 22 years of age. I don’t really know that I had a choice, although I wasn’t forced to have surgery. I was young and naive. I was not confident enough to know that I could advocate for myself. And even if I did know I was allowed to advocate for myself, I wouldn’t have known how. I didn’t have full access to the information required for such a decision. After all, it was 1996 and I lived in rural America. The library had fairly limited resources, especially in regards to the potential cures for rare medical conditions. And Google was merely a small research project, inaccessible to the public. So, a certain level of blind faith and trust was placed on the medical professionals who “knew their stuff”.
I spent several months on prednisone before my haematologist told me she wanted me to have surgery. No other treatments had been tried, and I was told that this surgery would “cure” me. I was still living in America at the time, and my insurance company was also urging me to have the surgery. (Not that insurance companies should be making medical decisions for people, but that is a whole different rant to be had!) At no point were other treatments offered, and I just assumed that my doctor knew best and accepted my fate.
Yes, I decided to have major surgery. And I decided because there was only one choice to make. (Or so I believed at the time.)
But did it work?
After my spleen was removed, my platelet counts increased to a healthy, normal level. Within a few weeks, I was deemed to be “in remission” and was told I would never have troubles again. And for the next few years, that was mostly true. In the first few years after my spleen was removed my platelet counts were around 200. (Normal levels are 150-400*.) When I got sick, they would drop below 150, but never below 100.
But in February 2002 (on my birthday, no less!) my counts crashed to single digits. All of the sudden, my ITP was back—and it was back with a vengeance! And for the past 14+ years, my platelet counts have been all over the place. When I get sick, they drop to dangerously low levels that sometimes leads to me being on bed rest for a while. And every once in a blue moon, they’ll nudge slightly over 150 (but never into the 200+ range, and only for a short while). But most of the time, my platelet counts fall in the 60-80 range.
So did the splenectomy work? I don’t know.
Who’s to say that the low platelet count I have now wouldn’t be even lower if I’d not had my spleen removed? Before my splenectomy, my platelet counts were chronically below 20 and often in the single digits, which can increase the risks of life-threatening haematological trauma. Now they only fall that low when I’m sick. (Well, most of the time. There have been a few unexplained wobbles.)
That makes me question if the splenectomy was a success in that my counts are now (relatively) stable at 60-80. Yes, that is low, but it does not generally pose a high level of risk for everyday activities. (Unless of course, you believe that knife-juggling is an everyday activity.)
Living a spleen-less life
Spleens aren’t like an appendix. They actually play an active role in filtering blood and is an important part of the immune system. That means I have to have a flu shot every year, and a pneumonia booster every five years. Without my spleen, I am more susceptible to certain illnesses, and I may have a harder (or at least longer) time to overcome common illnesses. And it also means I have to be more careful when thinking about travelling to malaria-prone places. But that’s not really something I can see being an actual concern in my near future!
But day-to-day life without a spleen isn’t really a problem. And in some ways, it can work in my favour. I mean, when you have a runny nose and no spleen, you get to see a doctor fairly swiftly! (I would never take advantage of that, but it is nice to know that if I need to see a doctor, I can almost always see them on the same day.)
Note: It is really common for doctors to prescribe a life-long course of antibiotics for asplenic patients. I have successfully argued that I do not need them, but when I see a new doctor they try to urge me to take them. But no, that’s not for me!
Regrets? I have a few.
If I had it to do all over again, with the knowledge and wisdom I’ve gained over the past 20 years, I would have delayed having my spleen removed. I would have requested other treatments (there are more treatments than just prednisone!) to be tried first. I would have researched all of my options. I would have advocated for myself. But I was young and I trusted my doctor’s opinion. I wish I could have played a stronger role in deciding what was best for my health. Especially now that I realise some treatments are unavailable to me specifically because I don’t have a spleen.
I am not suggesting that I wouldn’t have had my spleen removed. I also realise that being asplenic carries its own levels of danger and risk. But I also wonder if there would be even greater danger and risk if I had not had the surgery.
So yes, I have regrets. But that’s not to say that it was a mistake; I just wonder if it was the right option to choose at that time.
What should you do?
I can’t make this decision for you. I can’t tell you if you should have your spleen removed or not. But I would urge you to do your research and to advocate for yourself. If you don’t feel able, seek the help of a trusted family member or friend who will help you find information or who can advocate for you (or better still, with you).
Also, one thing I’ve found in searching for medical opinions (from non-medical professionals) online is that there is a lot of misinformation out there. And a lot of fear. Don’t let one person’s bad (or good!) experience act as your decision point; seek out a variety of opinions and a range of options. And never be afraid to ask your doctor for more information or to refer you to someone for a second opinion. A true professional will understand your desire to be informed.
Again, please note: I am not a medical professional. This post is about my personal choice (or lack of choice) for a splenectomy, as well as my personal experiences of and thoughts about life post-splenectomy. It is not meant to serve as medical advice and is not intended to encourage or discourage a splenectomy for others with ITP. However, I do hope that it will help others to think through their options – preferably with guidance and input from their medical care providers.
* A normal platelet count is 150-400 x 109/L which equates to 150,000-400,000. However, the counts are generally quoted without the extra zeros. Hence, a count of 50,000 is referred to as 50.
Photo note: Outline of spleen for the artwork by Clockwise (Spleen) from the Noun Project (Creative Commons Copyright). Overall artwork designed by me.
Title note: Venting one’s spleen is an idiom meaning to rant or to express pent-up anger. If you wondered.