Sandi- thanks for sharing. I've given this a lot of consideration, and while I haven't made my mind up yet, I'll offer my thoughts. I did want to say that my 'to be continued' from last night was meant to be just until tonight, as I have a lot more to share, though I didn't exactly make that clear.
First (and correct me if I'm wrong), but my understanding is that a splenectomy won't necessarily make you more susceptible to catching illnesses, but can make it much harder to fight them when you get them. For example, I don't believe you're more likely to catch a cold than anyone else, but in the event you do and it transitions to pneumonia, the result can be worse. In writing that I can agree that it doesn't logically follow, but that's how it was explained to me. Anybody care to clarify?
I can tell you that my immunoglobulins were down across the board after Rituxin and that my local hema directly attributed it to the Rituxin, though that again is no guarantee of a causal relationship.
That was a good appetizer, but here is the main course:
Splenectomy, and my case for it:
1. My quality of life at 35K platelets, even in the absence of requiring treatment, is suffering and I'm missing opportunities with my kids, etc. that I won't get back.
2. In the beginning of this odyssey I used to think that the available treatments, in lieu of a splenectomy, were without great risk or consequence. That was obviously naive, and I got over it. What took me a little longer to grasp was the cost of 'existing' with a barely adequate platelet count (35K or so). I actually feel like I'm aging prematurely because I'm perpetually too tired to work out, jump on the trampoline with my kids, do anything for very long, etc. I'm 43, with a 33 y/o mentality, trapped in a 63 y/o body. It's pretty frightening to consider what kind of 63 y/o I'll actually be. The reality is that in the absence of significant exercise, my body is suffering just as if I were experiencing side effects from a treatment. I'm basically suffering side effects from the absence of a treatment, if that doesn't sound too ridiculous. The way I look at it is that if I were on some sort of treatment, say Promacta, and it raised my platelets to 75K, I would have to deal with the side effects of the medication, but offsetting that I would likely have the energy to work out strenuously and consequently be in better health.
That being said, everything (inaction, treatment, splenectomy) comes with a cost and a benefit.
3. The very best report I've read on the subject so far (
bloodjournal.hematologylibrary.org/content/120/5/960.full.pdf+html ) indicates that the "cost" is roughly equal between treatment and splenectomy in that there appears to be no long term difference in mortality rates (i.e. lifespan) between ITP patients on long term treatment vs those with successful splenectomies, thought they do admit this result does not include data from the newer novel agents (n-plate, promacta). This satisfies a long term concern I've had. I had accepted that a splenectomy wouldn't likely affect my near term mortality, but I've always been concerned about my ability to get from, say, 73 to 83 years of age. Would a splenectomy be a significant health impediment later in life? The reports says no more that continued treatment would be, and I'll further extrapolate that to mean that it's also not worse that not being treated but not getting proper exercise.
4. The mental aspect is very real. I feel limited. Very limited. I consider myself to have a lot of mental fortitude. I've never been sedentary and have always been engaged in high performance activities; I've raced cars, visited 35 countries, run a marathon, was part of the 2/20th Special Forces Group in the army (Intel, not actually a Green Beret; I like to clarify that), I freefall skydive, and I have been an assistant scuba instructor. I'm not bragging about anything; I just trying to express, objectively, that when I explain that I feel limited and prematurely old, that it's not a mental block; it's an objective physical limitation. And if I'm being honest, I feel like it's reducing who I am and what my opportunities are. I want my life back.
5. I've had the Indium test performed. My platelet destruction is "largely sequestered in my spleen". The probability of success for a splenectomy is 87% at this point. This figure, which a friend and I worked out a year ago was interestingly reproduced in the report I cited above (I was going to ask for credit...), so aside from patting myself (ok, I have a journalism degree, so it was really my buddy the accountant/economist) on the back, this means a splenectomy should work.
How important is the Indium test? Well, it reduces the likelihood of failure by nearly two thirds, from 33% to just 13%. How significant is this? Without the Indium test, one in three fails. With positive results from the Indium test, only one in nine fails. Statistically that's huge. Or so I'm told.
6. The upshot for me, personally, is that I should get my 'life' back; i.e., my energy, my positive outlook, shared experiences with my kids, my ability to (for the most part) control my physical well being with exercise.
This is the philosophical conversation I've been having with myself and while I haven't yet made the decision yet, I'm getting closer.
I still have a lot to go over, but as long winded as I tend to get I'm again almost out of time.
Sandi, back to the Red Bull- I'm sure there's more to the study than what was published, but I can tell you that 30 kids is probably an inadequate size for a legitimate study, and while they did say their blood was syrupy or what not, they didn't disclose if there was any clinical significance. Also, they were testing them with the Red Bull Sugarfree, which I've never drank. But you piqued my curiosity and I will look into RB's safety now as it is a guilty pleasure, besides being an occasional 'therapy'.
And you bet I post because I want feedback. I've learned so much from the forums here that I like to both give back and continue my own education, so I welcome anyone to write.
More in a day or two--
KO