What is Life After Splenectomy Like?

After almost three years of all the kinds of available treatments (steroids - prednisone and decadron, Rituxan, IVIG) I can have without compromising other health issues, with only IVIG getting me aveage of 7 weeks of "freedom", am at point of considering having spleen out.

I would like to hear from folks who have had spleen out and just what kind of worry, care, precautions they have and experience on an ongoing basis about infections, cuts, etc. My biggest concern is the loss of immune support and how that impacts your daily life. I am concerned that I would be trading one set of worries (bleeding) with another set (loss of immunity), and if surgery doesn't work, I'm left with two ongoing worries. Are all the precautions you read about overblown and it's no big deal, or is it something you find you really do have to watch out for and plan life around on a constant basis? I'd like to get some information about your real experience living without a spleen. Thanks!

I haven't had my spleen removed for various reasons, some of which are posted below in the articles. At the risk of sounding like Chicken Little, I felt I had to point out risks other than the obvious immunosuppression.

The risks are small, but I would not want to have the surgery, have a problem and wonder why no one ever told me.

www.blackwellpublishing.com/isth2003/abstract.asp?id=9680

www.pdsa.org/forum/6-general-itp-discussion/15206-post-splenectomy-portal-vien-thrombosis.html

bloodjournal.hematologylibrary.org/content/104/4/956.full

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

www.hemoncstem.net/index.php/volume-3/issue-2/3039.html

I had my spleen out 4-1/2 years ago. Life without it is exactly like life with it, except for the lack of ITP symptoms for now.

I have only had a significant fever (103F or 39.5C) once since then (I normally don't get sick often), and I did see the doctor. He xrayed my lungs to make sure I didn't have pneumonia, which I didn't.

I did make a point of getting all the appropriate vaccinations (meningococcus, pneumococcus, and haemophilus influenzae B (HIB)), which greatly reduces the issue of sepsis, which was a problem 20 years ago and before with splenectomy patients, although even then it was very rare.

Hope this helps.

Ca, I had my spleen out in 2006 (was diagnosed in /04). I have to admit, I've been pretty lucky to not get sick much since then. I was sick for a week a couple of years ago, but I didn't run to the doctor even tho I know I'm supposed to. I have had a few fevers but haven't actually been checked out. Back in May, I was diagnosed with diverticulitus and ran a fever for a couple of days with that, so didn't run to the doctor.
I do try to avoid anyone who is sick, but that's not always possible. My splenectomy only worked for about a month, then I was back in the same boat I had started in. Last year I did Rituxan and since then have had normal counts.

One thing to remember is that we all respond to treatments differently. So just because my surgery didn't work for me, it might for you. But think long and hard about it and don't let anyone push you into it if you don't want it. Good luck and let us know what you decide.

Merry Christmas!

Unlike Mendenmh, my life without my spleen is just like life with it EXCEPT I still have ITP. My splenectomy was in 2004. I have not had more infections or illnesses than before. I am careful to wash my hands a lot and use hand sanitizer (but most people around me are also careful that way). I am exposed less to children than many people, so that also may be a factor.

Recovery from the laproscopic splenectomy itself was quick and relatively painless.

My PCP advises the spleenless to have the pneumonia vaccine and the meningitis vaccine. I've had both.

Don't forget your boosters!

"The CDC recommends annual influenza vaccine in addition to the pneumococcal, meningococcal, and Hib vaccines, because secondary bacterial infections can lead to severe disease in this patient population. Boosters are recommended for all the bacterial vaccines every 5 years for asplenic patients."

www.jfponline.com/Pages.asp?AID=4327&UID

I was diagnosed with ITP during a pregnancy in 2006. I was sent to a high risk OB and my daughter was born fine, although with ITP you cannot have any painkillers during birth because it will shrink your veins. If something were to go wrong you wouldn't be able to get an IV in, (so keep this in mind if anyone is planning to give birth with ITP.) My Hematologist though it would be best to remove my spleen as soon as possible due to the domestic situation I was in. So June of 2006 I had my splendectomy. I spent 8 days in the hospital due to getting pneumonia after surgery..even though I had all my vaccinations right before. The first year was rough, I had strep 3 times, laryngitis, flarygitis, just about anything you can think of...I caught. It has been almost 6 years, I am to my knowledge, still in remission..I have had 2 more children..which brings me to five altogether. That being said...I catch everything going around, my kids bring it home and whether they get symtoms or not..I get it...It takes me longer to get over an illness and usually it is worse than most people get. I also contract things that normal people don't get..The latest thing was cacksockle <---not cool, but it did go away after the said 12 days although the spots stayed a little longer than that. I was told that as long as I had small children in the house I would have to deal with this..So I tell my employers about the ITP and how it affects me now and for the most part they are forgiving. I try to avoid sick people, wash my hands and my childrens'. .All in All I think the spledectomy was a good idea..Atleast now I don't have the "not Knowing"

I had a splenectomy and it worked for a couple of days for me and my counts dropped right back down again.

I had a splenectomy in 2000 for a different blood disorder, hemolytic anemia. I developed ITP later in 2005. So, in my case the splenectomy did not help with the ITP. As far as other worries I work with young children ages 3-8 and get exposed to everything! I get sick just about the same amount as other teachers, a cold or 2 a year, a sore throat or 2. I do go to the doctor if I have a fever and she sometimes gives me antibiotics for a sore throat. I take a flu shot every year and got the other 3 vaccines that other people mentioned.

I think I am at the point of finally giving in and getting a Splenectomy. I have been using IvIG as a primary means of maintaining a safe count. Initially it lasted for up to 6 mos, but now it is only lasting 3-4 weeks before I fall below 20.

I am so discouraged. I knowthis is just an immune disorder, and a life long inconvenience,..but every now and then it becomes overwhelming all over again. I got used to the disorder after about a year, mostly cruised along by accepting it, but every now and then I just resent it and get angry about having it and have a bit of a "pitty party."

My whole problem with the splenectomy is that my spleen is a part of me...a living part of me..that I am just getting rid of, with little promise that it will solve the problem. I am a 65 year old woman, and that, according to what I have read, reduces the chance of success.

The remaining options for treatment seem more threatening to me....I have tried Rituxin, Steroids, and Decadron in addition to the IvIg. The RI hospitals will not use WinRo..
My doctor is offering a drug that raises testosterone, and the side effects sound horrible to me. I struggle with my weight, and I don't want male traits. The last choice would be n-plate, and I am not sure I am ready to have weekly injections for life with those potential side effects.

So, I am giving up and I have decided to give up my spleen...but I am mourning it, and I feel so sad about the whole thing. So very sad, and no one seems to understand. Everyone seems to think it is no big deal. But it is a big deal to me.
Jean

Jean - it is a big deal. People with ITP are not like normal people when they lose a spleen. There are other problems that can occur.

I think your doctor is talking about Danazol. It doesn't work very often. I tried it, but was allergic to it. It is usually prescribed for women for Endometriosis.

I wish I could give you hope. I've been diagnosed with ITP for 2 years now. I've had to have numerous platelet transfusions, numerous IVIG infusions as well as being on Rituxan for nearly 2 years. All of the above work for me for about 14 - 21 days and then my platelets plummet again.

With the IVIG, I have now developed severe migranes in which, normally, after 24 hours of infusion, I become so nauseated and severe headaches, I've ended up in the hospital for two days each time. This has happened to me 4 times since May, 2011. The latest being late August, 2011 in which I finally had to have an emergency splenectomy. As of last week, I have also learned that I developed an incisional hernia from the surgery. Because I've had to be on such high dozes of steriods for so long (100mg/day for months at a time), my muscles, etc. have been weakend and hence the hernia. Unfortunately, because of my failure with the splenectomy and my very low platelet count, I just have to live it the hernia and work through the aggravation and pain.

After the splenectomy, things were looking GREAT!!!! We thought we had kicked it but, I began going out in public and being around society and all chaos broke loose for me. It has been determined the splenectomy is not a success for me. As of today, 1/19/12 I have a platelet count of 17,000. Tomorrow I have an IVIG infusion scheduled but, at only a half dose because of the headaches and nausea I get with it. Next week, I begin new treatment with the injections of NPlate.

As with everyone, this ITP has changed my life drastically. I so long for my life pre-ITP but, I know that is long gone. All I can hope for is for my doctors to find a point where I can lead a normal life (somewhat) and have a normal platelet count.

I wish you luck with your splenectomy. I can't say I wish I had never done the splenectomy bcause for me, I truly had no option. I only wish it had worked for me.

Thanks for replying Sandi and RK. I see the doctor tomorrow. before my IvIg treatment. This really has me down. It has been 6 years of living with ITP, and it really has just been an inconvenience up until now. With the IvIG only lasting a month, the risks of continuing this treatment join the risks of all other treatments. I am just trying to weigh out which will have the least impact on my quality of life. I still wish the doctor would prescribe Rituxin again, as it did seem to improve the longevity of the IvIG. He once said yes, it probably did help, and the last time I saw him he said no...frustrating.
At the same time, I am so weary of it all that I just want to tell my doctor to make the decision. I have been intelligent all the way, (thanks to all of you!!!) Now I am tired of all the discussions...and resisting this spleenectomy.
RK, you have voiced my very worst fears. I am so sorry that this has gone so badly for you. So sorry. I am saying a prayer for you.. hope that is okay with you. Sometimes it is the only way to reach out.

Jef - have you thought about a second opinion? Maybe another doctor would be more willing to do what you prefer. Have you thought about N-Plate or Promacta?

Thanks Jeff.....it's been a long road.

I've done the Promacta and it failed as well. I had an IVIG appointment today and will again on Monday then they will determine when I start the NPlate. I, like many other ITP patients, just want to live somewhat of a normal life.

GOOD LUCK to you and keep you faith, as hard as that is at times.

Take Care...

Oh my! I want to give you some hope. I am 51 and had my spleen out May of 2011. I have had normal counts since. Last checkup was 281,000. So all hope is not gone. I too was soooo tired of treatments that didn't work. For me, NOTHING worked. I was always going down to rock bottom, getting another treatment of something, watching it bump up to maybe 80k and then watching it sink back down to zero. I had a second opinion who also said that splenectomy was my best next step. I was told that people my age have a less than 50% chance of recovery but since I had absolutely no underlying conditions that anyone could find, it really was the next best option. I was so sick of everything by then that I decided to go with it. It was actually a relief to decide to have surgery. At that point, I felt that any time without medication would be wonderful. If it didn't work, I would try NPlate. I had all the vaccinations 30 days before surgery.

I haven't been sick at all! I'm a teacher and am around kids constantly. The other staff are always coming down with viruses, stomach flu, etc. I wash my hands religiously, keep away from those that are sick, take vitamins, GET ENOUGH SLEEP, eat very well, and have changed alot of my life to cut down on stress. I don't know if that has helped my platelets stay healthy but its worth a try.

I try to live in the present and try to be aware of how good things are going with me. That way, if things go bad (and I don't think they will) I can look back to this time as amazing.

I hope my perspective on splenectomies has helped to ease your anxiety a little. Get a second opinion. And maybe a third opinion. Hang in there.

I will keep coming on the boards to look for replies.
Terrie

I had my splenectomy in 1994 at the age of 34. I am now a 50YO male in excellent
health with a few exceptions. My case is remarkable for the fact that my spleen
was sequestering platelets, but right after the splenectomy my count quickly returned
to within normal limits. Of course I routinely get my pneumovax every few years.

Although my subsequent health events are anecdotal, I believe that they are of some
significance and I have a few theories as to why I have had several conditions
aggravated at times by the lack of a spleen.

For instance, my bilirubin levels and MCV are slightly elevated at times, but sometimes
return to the normal range. I no longer drink alcohol, and was never a regular drinker.
My liver enzymes are within normal limits AST, ALT, and GGT (slightly elevated, but non-
specific as a diagnostic indicator).

Secondly, I have had a few bouts with MRSA occuring at yearly or bi-yearly intervals.
My first bout occurred two years after the splenectomy and required IV vancomycin. I have
since had a few staph infections (not MRSA) which were quickly controlled with oral
Bactrim and Keflex. The infections occurred in my lower legs bi-laterally and the first
time caused a cellulitis which now causes me to accumulate water in my calves at days end
or prolonged stationary standing. When these infections occur, I usually have a days
warning and I can obtain the necessary antibiotics before the infections become serious.
I also have chronic venous insufficiency, either as a primary condition, or as a condition
that is secondary to vascular changes as a consequence of hyposplenism.

My cholesterol is 170 mg/dl (perfect) and my HDL/LDL ratio is ideal, although this may
be genetic because I do not eat anything special. I had a vascular catheterization study
done follow an instance of pericarditis (unknown cause), and my coronary arteries are
crystal clear, so I have no risk of CAD or PAH at this point in my life.

All in all, everything is fine and I attribute my high MCV to occasional anemia - low
hemoglobin at times, although my Hgb is now comfortable at 14 when at times it was high
10 or ll... I took daily iron and it is unclear whether this helped.

I do have psoriatic arthritis and this may be an indication that I have an overactive immune
system, although this chronic disorder was successfully treated with a short course of Enbrel
which resolved my psoriatic plaques on my skin. One should be careful and monitored if
taking any treatments that are immunosupressive.

Hope this might ring a bell for someone that has had similar issues.