Splenectomy

Sandi:

Wow, 7 years is a long time. Can you not get off because you get worse immediately? I wonder/ worry about the dependency thing long term with Prednisone....

I thought maybe someone had at least heard about Naltrexone or used it for ITP. My hematologist just said they wouldn't prescribe it unless I'd had my spleen out. He said the splenectomy was considered a safer option. Safer than immune suppressors. He said for my age splenectomy was a better idea.

I'm still trying the diet/ detox thing for now. Maybe it's just my denial about this whole thing but I'll give it a bash.

I think at this point I've decided I can live with a 30K count but if it drops again consistently I'll have the splenectomy done.

How old are you (ballpark)?

See, here's my problem with the splenectomy vs. immunosuppressants thing. What happens if you get the splenectomy and it fails? You end up on the same meds you were trying to avoid in the first place, but doubly immunosuppressed because you have no spleen AND are taking meds. I haven't really heard of people having serious problems while just using meds, but when you add the splenectomy into the mix, that is when the problems can arise.

This is your life, your decision. If you believe splenectomy to be the best option, then go for it, but be sure to be aware of all of the ramifications. None of this is easy. A second opinion also wouldn't be a bad idea.

I can't get off of Prednisone because of chronic muscle pain, and on days when I'm stressed or do too much physically, I can't move and end up taking larger doses (30 mg's) than I'm supposed to (10 mg's). It's the only thing that really works.

Hi Sandi

I'm 29 now. Not sure how they see that in the larger scheme of things in terms of surgery vs drugs.

I totally agree with you on the splenectomy and that's the number one reason I don't want it. A scenario where I have the same count as now and no spleen. Then I guess if you take immunosppressive drugs you don't have a spleen to help you when you get some heinous bug. The whole thing makes absolutely no sense. The thing is I just got my results back today and my levels dropped from 90K to 30 and now 19 again. I can't do another Intragam apparently so now they want my spleen out. I'm just too afraid to go to sleep at night or go to work so I'm feeling a bit desperate

May i ask what your long term side effects have been with the Prednisone? Just that this may very well be something I face too, post surgery. I guess some people experience different things but the one scary thing was the diabetes and glaucoma. Are you on Prednisone for Lupus or ITP?

Jethro:

A splenectomy is nothing to be taken lightly, but also not really life changing for most people. There are a lot of non-ITP people who have them as a result of traumatic accidents which cause splenic rupture. It's a pretty big population. Since there are vaccinations now for the infections that were most troublesome afterwards, the risk is pretty low. I have had my spleen out for ITP, and take immunosuppressants (azathioprine) for psoriasis. I do not get colds, infections, or anything.

My rationale for going with the splenectomy was that it looked like odds quite a bit better than a coin toss to buy a about a decade with no further UTP intervention. I was sick of the drugs (IVIG, WinRho, prednisone) and the constant messing around. I won the toss, so far, and am quite happy with it, but would not have considered it a mistake even if I lost.

Jethro,
Is getting a platelet destruction study done in London or Paris an option for you? I was considereing flying to London and paying out of pocket for it at one point in time. While it doesn't predict success of a splenectomy it can tell you if it will fail. There is a lot of information on the boards here about the study.

Jethro:

As of yet, I have not had any long term side effects (such as cataracts, AVN, etc). I know it will catch up with me one day, but not yet. I take it for Lupus, but have used it for ITP as well.

One difference between the general asplenic population and the ITP asplenic population; those with autoimmune disorders are prone to relapse or acquire other autoimmune disorders which sometimes require immunosuppressants. Being immunosuppressed does not necessarily mean you are at risk to get sick more often, it means that if you do, it could go bad very quickly.

You are in a good age range for the possibility of success, whether that is short term or long term is a guess. I'm not telling you not to consider it, just make an informed decision. Every treatment decision could possibly affect the rest of your life. I found that out.

At 19, how are your symptoms? If they are few, try to relax a bit. What do you do at work?

Jethro
It is understandable that you are trying to turn over every stone before you move and make that decision but I personally wouldn't have bothered flying to London for a platelet test. Besides which if your platelets are low you wont be able to fly because of thrombosis issues.

I don't think the test was around when I had my spleen removed (1994) but from what I have read it isn't that conclusive a test anyway to spend that kind of money on. Though in reality the choice is yours to make.

At each question answered you think of another question which is quite understandable but I think it may well be time for you to spend some quiet time, however you spend your quiet time and think what you are going to do next.

You have read about a few of us who have had splenectomies and a few o us who haven't in this thread alone. If it helps, find some paper and do a for and against list. Reasons for to have a splenectomy and reasons not to have a splenectomy. Added up the two lists and choose to go with the 'shortest' perhaps? Remembering none of it is set in stone and you can well change your mind anytime.

I have had IVIG, steroids and now rituximab since splenectomy. Rituximab being the newest (July this year) and yes I have a mild cold right now though coughing more than a cold. But with having been born with hole-in-heart and it been repaired though a small hole there I am more prone to chesty stuff anyways.

Like I say, it is understandable very much indeed that you are worrying. Quiet how long have you had a very low platelet count now? What is your hemo asking you to do?

Do that list and see if it helps you with a choice because I personally think that is your next step. To make a decision I mean...

Hello everyone

Again, thanks for all your valuable input here. I would love to go for a test to see if it's successful or not but yes, I can't travel now with such a low count and I don't have to money.

The splenectomy does look like a gamble really and something I've prepared to do but will never be truly comfortable with.

The thing is when my platelets are really low, like under 10K I still don't really even bleed. I have no bleeding gums or dots on my skin (hardly any when they drop under 10) At the moment they're 19K and I'm fine, other than the lethargy and a little bit of blood in my nose in the morning. I can live with that for now.

I'm on this whole diet thing to heal my stomach and clean my blood out. I just want to try everything I have at my disposal. It hasn't done much yet but I'm also coming off Pred so it's difficult to tell really.

But yes, I'm 29 and I don't have many major bleeds. It's just inhibiting in that you can't go out and get fit or anything. I work in broadcast media so I don't have to do any heavy lifting. I can still do my job and carry on with things pretty much as normal.

Thank you for the idea of making a list. I think putting it out on paper will make it easier to comprehend anyways.

Thanks to you guys for being there too! It's really awesome reading your input and experiences and just making it feel way more 'normal'.

Monday I have another blood test. I know if the count is under 10K my hematologist is going to call me in for the surgery. He's been saying that since March this year so I think he just wanted to see how I responded to IvIg and steroids. At this point he said getting under 10K is dangerous so they can only suggest the splenectomy and nothing else.

Hi Jethro,
You still sound very uncomfortable with the surgery, and symptoms or not I still believe something should be done when counts are under 20 (just my personal belief). Would you be comfortable enough with your Doctor to suggest other treatments, might be worth a shot before the surgery.
Good luck with the counts on Monday...

He's not giving you all of the available options. Again, second opinion might be good.

Hello Jethro!
I am wondering: has your heme mentioned rituxan? I had my spleen out in may but only after nothing, at all, worked! My count was usually between 3 and 10K. I went to the Mayo Clinic, which has an amazing record, for a second opinion. I had all these tests done there and was told, once again, that a splenectomy was my best option. I didn't have any underlying conditions so the odds were pretty good that it would work. I'm 51. The dr. at Mayo referred to Nplate and promacta as bandaids because its not stopping the platelets from being absorbed but just triggering your body to make more platelets to help better keep up with the destruction. so I had the surgery and am so far doing wonderful (239K at last count.) I can totally see, though, how someone could go with the promacta and be fine with it.

I didn't even consider surgery until I felt all my options were exhausted. My heme still wants to see me every 3 months just in case my platelets start going down and I hate those visits even though they have all been positive so far. I also heard about the tests that tell if just your spleen is absorbing the platelets or if the absorbtion is more diffuse -- other organs are playing a part in it as well. I wasn't willing to fly to a place just for that test.

Read, read, read, Jethro. there's alot of good information on this site. I would bring articles to my heme and he would sometimes give me some I hadn't read. I figure that if I am making an educated choice -- or at least as educated as I can make myself-- there's nothing or no one to blame. And the information is out there.

Sandi is an excellent source for article references,as well.

good luck. I'll be waiting to see what happens so stay in touch with the boards. This is an excellent place to find positive people.

and what about the ones that it puts in to remission.? for yrs and yrs..isnt it worth a break from all th edrugs.

I had mine oout..and i havent been ill..i got scared when they all said you;d eb sick this and that..i have not been ill or gotten a bug since having my spleen removed..best choiceI made..

To make an educated choice. So true because I also wanted to cover all my bases so I wasn't losing an organ all for nothing.

I've had a bone marrow biopsy to make sure there isn't any other dodgy thing there causing platelet suppression.

I spoke to my hem. about my options if I don't take surgery and some of the drugs like Rituxan and two other drugs they explained in great detail. I don't remember the names. I just know that they also may not work so well and the one they explained to me (immune suppressor) that if I use it now that if it doesn't work then I can't have the splenectomy for nine months or more because it's too risky.

Anyway, long story short, I've decided to go ahead with surgery now. It's booked for two weeks from now. Unless I get struck by lightning and this thing magically disappears I'm sticking to the splenectomy.

I've tried diets and all sorts of things but in the end I'm now at peace with the fact that I don't have the control any more. Also over losing an organ. (sort of) haha

I'll keep you posted but I'm running out of safe and realistic options. If I weigh up the results then surgery is best for now.

In terms of second opinions I'm not really sure hematologists have any other options available other than the drugs. I've seen two so far. First one diagnosed me and the second one is treating me on this current program but they would still refer me for the same options if I don't want surgery. I'm done with alternative treatments too. I just keep getting stuck in this vicious cycle with Prednisone again and IvIg that lasts a whole two weeks. (Gets my family all excited till I explained how it works)

I'll keep posting on what happens I think the drug free approach is really the most attractive option at the moment If it fails then so be it.

Thank you all for your posts!

Well there, Jethro! You made your decision and I wish you the best!

" Anyway, long story short, I've decided to go ahead with surgery now. It's booked for two weeks from now. Unless I get struck by lightning and this thing magically disappears I'm sticking to the splenectomy. "

OK, that's a new one on me. I had never heard of being struck by lightning as an ITP cure. Should I try it?

I am glad you are at peace with the decision you have made and I wish you all the best and will try to remember to think about you. Best wishes

Good luck, Jethro! I will be thinking about you!! You will be in my prayers, too. When is the big day?

Best of luck Jethro, I am sure you will be fine!!!

Someone sent me this when I had my splenectomy, so I'm passing on the smiles. iheartguts.com/shop/index.php?main_page=document_general_info&cPath=15&products_id=201
It's a splenectomy e-card

Jethro:
It sounds as though you are looking for a magic bullet as the cure. Do not base your decision on what the percentage of success is by removing your spleen. I have and most people who keep reading about ITP find that these numbers are elusive. I have yet to see that anyone has done a comprehensive survey on any treatment. I have heard that there is a 60% rate of success with the spleenectomy. but I have also heard that there is a a much as a 50% chance that the ITP will come back.

If there is no proven disease or problem with your spleen, then the spleenectomy may not work.

Do not be impulsive.

Thank you for the e Card! hahahaha it's so awesome and I had a good laugh

I am still not totally comfortable with having "the thingy" removed. It doesn't rest well with me. The main reason I'm having it done though is because there is that possibility that it works and I can live drug free with ITP.

I see people posting about splenectomy failure and it makes me really nervous and sad to see that could be me. In an ideal world none of us would have ITP. It's just one of those things I think we are forced to face I guess. I agree that I am looking for a quick fix but the doctors have convinced me that it is the next best course of action and for the first time I feel comfortable enough to trust their decision. I'm also getting tired of the constant stabbing pain in my side!

I haven't posted in a while because surgery day was moved around. I'm booked in now for Monday 31 October. Happy Halloween! Woooo!

Unfortunately I still haven't been struck by lightning so I can't give you any feedback on that. My sense of humor is working overtime to help me through this though

Here's an interesting article I found on breastfeeding and autoimmune disorders for anyone keen on reading it. I didn't respond to breastfeeding when I was a kid and thought there was perhaps a link there: www.jaoa.org/content/106/4/203.full

Thank you again so much for your comments and wishes. Between here and the Facebook support group I really feel a whole lot less alone in this (that has been meant a lot to me). You guys are awesome! I'll keep you posted on the post op stuff.

Peace out

Jet

Good luck on Monday, Jet! Hope you respond to the surgery.

Hey Jet, just wanted to say best of luck for Monday. It is a big decision and I am sure you have put a lot of thought into it. I will be thinking of you and looking forward to hearing how it goes.
I am pretty pleased to see you didn't get struck by lightning as I dont think that would have helped much.
So from the land down under to the land of the long white cloud I wish you well neighbour.
Milly

How did it go, Jethro?

hey Jethro ! I'm thinking about you and how everything went. I am excited to hear from you.

Just my two cents: Had splenectomy in 1973, platelets still in the normal range. Get other side effects from the compromised immune system, but they're ones I can live with. Good luck Jethro.

Hello again

Thank you for your wishes everyone. I thought about you guys when going in to surgery (and a bollion other weird thoughts,hahaha). I was really nervous but it all went really well. I recovered really quickly and can even jump around a bit

My platelets are sitting at 350 000 since surgery, despite coming off Prednisone quickly too.

I have so much energy and am even walking further and faster than I did two weeks before surgery. This is just over two weeks later.

I didn't want to post too soon as you never know how these things pan out. (even from this point on it's anyone's guess)

In the most ironic twist I have been put on Warfarin to dissolve a post-surgery clot in my liver but am under close monitoring with the hematology team.

I am so grateful that trading my spleen for platelets worked for now and to have energy again. I am really just praying it holds out. At peace with whatever happens though.

I hear success stories with splenectomy cases that really give me hope but as they say you can be in remission for years right?

Thanks again guys and hope you are all doing well too

love and peace from Aotearoa

Jet

Good for you Jethro, so happy to hear you are doing good.

so glad that it seems to be working so far!