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TOPIC: Side effects splenectomy/itp

Side effects splenectomy/itp 1 year 4 months ago #31013

  • Joya
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Hi everyone!

It's been a while since I've posted here.
I had my spleen removed in 2010 and have been in remission ever since.. September 2012 I gave birth to a beautiful little boy and during my pregnancy my counts where stable.. I did have an extremely high blood pressure which resulted in me spending 6 weeks in the hospital and an induced labour at 36.5 weeks.. In week 34 my counts dropped but never bellow 80 and after my son was born they started going up and are recently stable at 150..

Even though my counts are stable I still feel like I have to deal with ITP and the splenectomy daily, I just wanted to ask if anyone can relate to the issues I'm currently dealing with since my doctor won't take me seriously.

(Note: I live in the Netherlands and they seem to be way behind in knowledge when it comes to ITP and splenectomy.)

I'm always tired, extremely tired.. I'm in survival modes trying to get threw each day. I had my blood checked last week and nothing came out. My doctor first thought it was a psychological problem but after talking to a therapist for months they came to the conclusion my depressive state was due to the fatigue and not the other way around. She now send me to a Fysiotherapeut to learn how to relax.. Sometimes I feel like she's just sending me to others so she won't have to listen to me anymore..

Even though I'm extremely tired I'm unable to fall asleep most times.. And when I do I wake up every 20-30 minutes due to excessive dreaming..

Then I don't have an appetite at all.. I struggle with eating every day.. Not because I don't want to eat but it's just really hard to eat 6 times a day with zero appetite..

It there anyone who has the same symptoms?
I think I'm tired and having sleeping and eating problems due to the fact that my body is in constant battle.. My liver has to do the work my spleen used to do and I think this is causing the problems.. According to the doctors here that makes no sense and its all in my head..

I just don't know what to do anymore.. I have this beautiful son and most days I'm to tired to get up in the morning to take care of him so my husband has to do that.. I'm tired of trying to defend myself to the doctors..
Any tips would be greatly appreciated!

I'm sorry for the grammar mistakes, English isn't my first language..

Thank you al so much for taking the time to read my story!
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Side effects splenectomy/itp 1 year 4 months ago #31025

  • Sandi
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Joya:

It worries me that everyone tends to blame ITP for so many unexplained symptoms. The fact is that although ITP may cause fatigue for some people, it does not cause fatigue for everyone. Most people only feel fatigued when counts are low, and others complain that they feel tired for the rest of their lives even if counts are good. In those cases, I tend to believe that there might be something else going on other than ITP.

I do agree with your doctors about the liver part....being spleenless should not cause the problems that you are having. You need a doctor who will give you a good work-up and dig around to see if you have another possible diagnosis. Part of the problem is that some disorders develop very slowly and it's impossible to diagnose it until it becomes serious enough to detect. It can take years.

In the meantime, the best thing you can do for yourself is to eat healthy foods, even if it is only twice a day, and try to exercise and take walks. I know that is hard to do when you are tired, but you have to build your body up before it will get stronger. If you don't, you will remain tired and weak and things will only get worse.
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Side effects splenectomy/itp 1 year 4 months ago #31032

  • karenr
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My splenectomy (2004) didn't work--that is, it didn't put me into remission from ITP for even a few months--but it hasn't resulted in fatigue or really any other symptoms. Over the years that I've read this board, I've noticed people complaining about fatigue, which they attributed to their ITP (something I haven't had), but I don't recall anyone complaining about fatigue resulting from a splenectomy. (I suppose if one had an "open splenectomy" --not a laproscopic one--fatigue would be part of the recovery from that big surgery.)
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Side effects splenectomy/itp 1 year 4 months ago #31039

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Karen, how has life changed for you without a spleen? Since it's something we all might face at some point depending on our situations it's something I'm always anxious to hear more about from people who have had their spleen removed. Do you feel you get sick more often or is it about the same. There is one really good success story here on this board where the man not only received a complete ITP remission but has not seem to have any significant adverse affects from his spleenectomy but figured he might just be a luck one. Thanks ahead of time for any response.
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Side effects splenectomy/itp 1 year 4 months ago #31040

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Have any of your doctors been concerned about postpartum depression?
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Side effects splenectomy/itp 1 year 4 months ago #31041

  • Joya
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Hi everyone thanks for the responses!

I'm definitely not trying to blame ITP for everything.. I'm just a little bit desperate trying to find out what's wrong so I thought I'd ask if anyone has the same symptoms..

As for post partum depression, I've had these symptoms for 3 years already.. They put me on sleeping medication which helped with the sleeping and fatigue but cost so many side effects and I had to stop during pregnancy.. And I have a new doctor now who doesn't believe in sleeping medication.. Now with Maddox it's harder for me to deal with the fatigue since a baby just costs a lot of energy..

As for the splenectomy.. If the symptoms are not related I can say it was a big succes.. My counts are stable, surgery wasn't that bad.. I was back teaching dance classes within 3 weeks and the scars health beautifully..
I don't think I get sick more easily.. I have been sick twice in the last 3 years.. But when I get sick it seems to be more severe then before.. High fevers which take a lot longer to go down.. But the antibiotics work..

For example I had a blather infection 2 years ago.. I didn't notice soon enough so by the time I got really sick I had an air way infection with it as well.. I had to go to the emergency room since my fever was up to 40.5 degrees Celsius.. They put me on antibiotics and send me home.. I had a fever for about 2 weeks and after 3 weeks I was able to get back to work.. It took me a while before I felt back to normal..

That's the only time I was really sick.. Last Christmas I had a fever for a couple of days and had to take antibiotics but nothing to serious.. The flu was going around and everyone was getting sick so I don't blame not having a spleen for that..

In conclusion.. I really don't think I get sick more often its just that if I get sick it's more severe.. I have the antibiotics at home and as soon as I run a fever I have to start taking them.. I get my flu shots every year and the other shots every 3 years..

One thing I do really notice is that when you've had a splenectomy you should try to avoid drinking alcohol.. I'm not a big drinker so I don't have a problem with is its just that if I have for example 2 or 3 glasses of wine I need a couple of days to recover.

Hope this is useful information..
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Side effects splenectomy/itp 1 year 4 months ago #31046

Hi Joya,

Have you been checked for other autoimmune diseases, specifically Lupus. I know that extreme, constant fatigue is a common symptom of Lupus. And ITP can also be a presenting symptom of Lupus.

My teenage daughter has ITP and now possibly Lupus.
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Side effects splenectomy/itp 1 year 4 months ago #31047

  • Joya
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Thanks for your response!
My grandma died of SLE (systemic lupus erythematosus) and my aunt has it as well.. She just had a terrible attack (couldn't come up with the right word for it)

But since I don't have any other symptoms that sle would cause and there's no scientific evidence for it being hereditary (is that the right word) the doctors say they don't have anything to test. So it's basically waiting for other symptoms.. Sle is really hard to diagnose as you probably know.. Really sucks not knowing what's wrong and waiting if you'll get sick(er) or not..

Sorry for the rant.. And terrible grammar.. It's bedtime here and the later it gets the worse my English usually gets :blush:
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Side effects splenectomy/itp 1 year 4 months ago #31048

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It's a good thing not to have any other SLE symptoms. I know it's frustrating not having a diagnosis, but it's even more frustrating to live with the symptoms and treatments for Lupus.

Hang in there. I hope you don't end up with that diagnosis!
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Side effects splenectomy/itp 1 year 4 months ago #31049

  • Joya
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Sandi you're so right! I'm really scared one day they'll make that diagnose.. But at the moment I don't think they ever will (positive thinking). Maybe that's why I put everything on ITP and living without a spleen.. I'm scared they'll find something else but at the other hand I'm scared they'll never find anything which means there's nothing they can do for me..

Sorry.. The posts start to sound like me feeling sorry for my self.. I def don't mean to! I know there are a lot of you dealing with way serious problems!

Thank you all for taking the time to respond.. It really means a lot! It's very nice to be able to talk to people who have ITP and know what they're talking about because of there own experiences..
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Side effects splenectomy/itp 1 year 4 months ago #31050

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In response to Russ, I haven't been aware of any long-term effects of my splenectomy. I am retired, so I'm no longer in contact with as many germy students, but I do have quite a few contacts each day. I use hand sanitizer and wash my hands often, try not to touch my face unless I've just washed, move away from coughs and sneezes if possible--but I don't seem to have any more or worse colds or other illnesses than I did before. My life style is quite healthy.

That said, I think I was able to wrangle a private hospital room after knee replacement because I told the admitting nurse that I had no spleen and an autoimmune disease!
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Side effects splenectomy/itp 1 year 4 months ago #31055

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Joya - even with a Lupus diagnosis, there isn't much they can do for fatigue. You just learn to live with it.
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