Splenectomy

How cautiously must you live your life after removing your spleen?
I'm just questioning doing a splenectomy even though I've been told
by several different doctors that it may be best.

Every other treatment has failed.

If you make sure to get your regular vaccines and are cautious around sick people, sepsis is rare although it does happen. The pneumonia shot is not 100% preventative and encapsulated bacteria can be found in dog saliva, dirt, etc., exposing you to risk. Also, if the splenectomy fails and you would need immunosuppressants for any reason, you would be more at risk.

There are other problems that can crop up also. I have provided some information below that you may want to read.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

(#10 is especially informative).

www.ncbi.nlm.nih.gov/pmc/articles/PMC3674676/

www.ncbi.nlm.nih.gov/pmc/articles/PMC2756197/

What treatments have you tried? How are your counts and symptoms?

Yes, what treatments have you tried and how is your count?

My thought was the doctors couldn't assure me I'd be cured if had a splenectomy so mine is still in place.

My range is normally between 20,000-40,000

I've tried prednisone and rituximab. My count responded to the prednisone but dropped after they winged me off. They tried the rituximab and they dropped each time.

I had my splenectomy in /06 and really have only gotten sick twice that I can remember. I do get my flu shot every year and I try to avoid anyone who is sick. I don't run to the doctor or hospital any time I get a fever or sore throat.

I was diagnosed with ITP in early April 1974, was on prednisone for a month and had my spleen removed on 5/8/1974 (my 24th birthday, what a nice gift life is, eh?) At that time not much was known about ITP and I was given very little support regarding life after the splenectomy. That has caused me to live as if I was normal, yet another gift.

I have not had a platelet count since 1975 or 76, but I certainly can tell when I am getting "run down" as I start to bruise. The biggest problem is aging without being able to take aspirin for my increasingly bothersome arthritis. I tried taking an aspirin every third day (I had fallen and sprained my ankle) and after 21 days I began to notice the hemorragic rash on my legs and arms.

I am sick often and experience low grade fevers on an on-going basis. I find that nothing I can take (APAP) works at lowering my temperature when I am feverish and that is another down-side of not having aspirin. My last job was exactly NOT what I should have been doing and I am paying the price. I worked in a residential treatment facility for schizophrenics and between our residents and the staff someone was always sick and so was I.

But other than not taking aspirin I live pretty darn normally from day to day, if not being able to work full-time and having to rest after 6 or 8 hours up and going is "normal." I thank Heaven that I could retire when I did despite the hardship of living on a minimal income.

And I have not had health insurance since 1990 (for the obvious reasons) and now look forward to having a bit more care. Only a year and a half to go to Medicare and I will be signing up for an ACA plan sometime soon.

Consider yourselves lucky at having this kind of support. I have gone a lifetime without any support and find that friends and family do not understand the symptoms of this condition. The pain and exhaustion are difficult to understand if you do not suffer the same.

Kris:

If your counts are normal, you should not have any more problems with aspirin than a person without ITP would have. I have had ITP and need to take aspirin for several reasons. I bruise easily, but so would a person without ITP. If my counts drop below 50k, I'd have to stop the aspirin.

I'm still trying to weigh the pros and cons of having my spleen removed.
I keep wondering to myself, what if I just leave my itp alone...just hope I stay in my 20,000-40,000 range the rest of my life.

Many here choose the "watchful waiting" way of treating. Depending on your lifestyle it can be very viable.

Cindy Ann

Heather:

Your counts are in a fairly safe range and many would not even treat at those counts let alone consider splenectomy. Unless you have a physically demanding lifestyle, your counts are not bad.

Thanks for the advice, Sandi, but I was told NOT to take aspirin and since I have reached the ripe old age of 63-nearly-64 I think I will stick with that advice. And, actually, I am sort of glad that I have no idea of my platelet count as knowing would just be asking for a lot of worry. It is what it is and it can't be changed, get on with it, I say.

I am sort of against medical intervention unless it is necessary. As long as I am not bleeding to death internally I am not going to worry. I am very grateful that my healthcare professionals did not burden me with the worry that I would be the one in three who experienced a relapse of symptoms post-splenectomy.

Stress is bad for you, you know.

Oh believe me, I know that stress is bad. It's not a bad thing though to be informed and stay on top of your health.

Thanks for your understanding. Yes, knowledge is good and I know how lucky I am to have such a simple time with this condition. I was lucky to live somewhere I could be diagnosed quickly and that the extreme measures worked for me. I met someone where I now live who suffered with symptoms of the condition for two years before her GP said to her, "If you think you are so sick why don't you got to San Francisco?" which she did, was diagnosed quickly and removal of spleen worked for her, too, or at least, had at the time we connected.

Sorry to hear how difficult it is for so many. Wondering if this is, like so many other conditions, becoming more and more prevalent these days and what the heck we are doing to ourselves to cause this.

still_kris I believe it is more prevalent because it is more common to check CBC's. That said if you look at most autoimmune disease there seems to be a rise in the occurrence. The rare disease web site quoted an approx 1 in (**,***) for woman and less than that for men. Can't remember exact numbers. If what they say is accurate this means that I should be the only one in my city with ITP and I honestly believe I am not the only one.


My daughter has been having CBC's with platelet counts under the normal range (140-500 but above 100). When she asks for her platelet count she explains I have ITP. She has had more than one doctor say well your just below the normal range. Than proceed to say that they would not have even mentioned it except for her saying her mom has ITP.


So I wonder how many others out there are lower than the so called normal range and don't get diagnosed?

If they dropped the normal range to 100 - 400 how many would loose their diagnosis?

And yes the big question what out there is causing an increase of autoimmune diseases? Is it really an increase or is it because were getting so medically advanced?

As far as I know, the lower end of normal has been redefined as 100 now

I would not have been diagnosed if I had not had symptoms. As a 20-something, I did not go to the doctor for regular check-ups so would not have been dx'd "by accident."

As far as getting sick every time I go to the grocery store, it occurred to me that it might be due to off-gassing of all the plastic and other packaging. I have a friend who was dx'd with MCS (multiple chemical sensitivities) who avoids as much plastic as possible and has developed many food sensitivities in the past few years.

I can recall a trip to SoCal to visit my mother when I discovered her helper had used all the laundry soap (yes, soap) I left there and had to go to several stores to find another box. By the time I had walked down the detergent aisle in 6 or 7 stores I was sick, no kidding, raw throat, congested chest, etc. that continued to develop into a URI. So I could also be reacting to the poor air quality that must exist in most grocery stores.

Anyone else had similar experiences?

Im having my splenectomy this month. Still kind of nervous about the whole thing. My ct scan showed my spleen to be slightly enlarged but they can still do it licroscopicly.

Hope the surgery goes well. Let us know how you are doing.

Post removed.

Mikka, there is no way any doctor would do a splenectomy for ITP on someone like yourself who has counts above 50. The newer ITP treatments, Nplate and Promacta (Revolade in the UK), are designed to give a count of around 50.

Also if you are not sure that you really have ITP then a splenectomy is not a good idea. First you need to get a definite diagnosis.

Splenectomy is not always a great solution. It can lead to a whole other set of problems that can be worse than ITP. Newer research is showing that splenectomy can result in a higher risk of blood clots and some of the top ITP Specialists are not recommending it any more.

Post removed.

Splenectomy also does not always work and can fail at any time, even if it initially seems successful. If it were a quick fix, everyone would just do that instead of the nasty meds. This board has many people who have had it done, but are back on the same treatments they had before.

Post removed.

Mikka If I am repeating myself sorry.

My recommendation is to research all your options. All treatments do not work the same for everyone what works for one doesn't always work for another. If you have done your research and looked at all options and decide having your spleen removed is your best option. Than for you it is your best option.


Most importantly remember to look at the total picture.

1. How does ITP effect my quality of life?
2. What are my options for treatments?
3. What are the side effects long and short term of each treatment?
4. what happens if it works?
5. what happens if it doesn't work?
6. Did I make this decision or did someone make it for me?

The most important question
7. If I chose a treatment and it doesn't work am I going to be ok with that?

I had my spleen removed 10 years ago , well it was a waste, day after surgery I was back down to 3000....not sure if I ve heard many success stories about the surgery over the years. Rituxan and 6 Dex pulses is what got me back to sorta normal numbers a year after.. I would really rethink the splenectomy, I miss my spleen...Ive been faily healthy , but its always in the back of my mind about septas.. Plus one thing I miss the most is eating raw oysters or sushi..they are a death sentence if you eat a bad piece...but really do miss them..Im no doctor , but my Doc , put me through those Dex cocktails with the Rituxan and they were really brutal on the body , but they worked for me..The rituxan isn't bad, but the Dex pulse were really bad, 2 weeks in bed after each dose which was 10 pills a day for 6 days and the weeks after were just terrible.. Like having the flu but 10 x s worse...Just me my 2 cents about losing the spleen...really look at your options.

Gofishguy, I was never told to avoid sushi or raw oysters after my splenectomy (2004). Is that what they tell most splenectomy patients?

My splenectomy didn't "work," but the laproscopic surgery itself was fairly innocuous, and recovery was swift. I am very careful about washing my hands and using sanitizer, but I have not had an increase in illness because of not having a spleen.

I had my splenectomy at 63. I think I would have had a slightly higher chance of success (remission of ITP) had I been younger.

Is it because of the presence of an autoimmune disease or the absence of the spleen that we are not supposed to have live vaccines? I am sorry that I am unable to have the shingles vaccine.

Karen R

Here's an article about sushi:

shine.yahoo.com/healthy-living/dangers-eating-sushi-worst-case-scenario-guide-215700695.html

A few other articles about sepsis - non-fish related (read only if you really want to know).


www.wormsandgermsblog.com/tags/splenectomy/

www.sepsisalliance.org/sepsis_and/influenza/

Thanks for articles, Sandi. Sounds as if NO ONE should eat sushi!

Karen

I don't! :sick: