Life w/o a Spleen

Hey everyone,

I was diag. with ITP on 06/03/2010 with a platelet count of 2k. As for treatments, nothing for ITP has worked for me expect prednisone, and even that had stopped working after being on it for 2 weeks at 80mg. At the beginning of August I was told by 2 seperate hemo's that my spleen must be removed and that was the best option for me, one of which was a UCLA doctor. I went ahead and scheduled my splenectomy for 08/16/2010, though fearful it wouldnt work ( I have been vaccinated for all the appropriate bacterial infections as well). Heck, I even called my hemo the day before surgery to ask if she was absolutley certain this was the way to go, and she replied with, "Yes it is, your in good hands. This needs to be done."

With all that said, I am now spleenless and my counts have gone from 450k on week one to 200k on week three to 44k end of week five. Though it may go up again, it may not.

I guess my question is this, for those without a spleen, how do you live your life? I has told that having a spleen was not nessicary, which it isnt, but no one ever told me that you needed to see your doctor every time you get a simple cold, fever, or sore throat until AFTER surgery.

Maybe I'm venting more than asking a question here.. I'm just afraid of dying due to and encapsulated bacteria, and now ITP again since the splenectomy seems to be failing.

(Please, no responses about how splenectomy was a bad decision.. I've been kicking myself since I found out my platelets were dropping. I don't need any negative replys at the moment.. Whats the past is the past..)

My Autoimmune Disorders:

Ulcerative Colitis (Colon removed in 05')
ITP (Spleen Removed in 10')
PSC (Liver disease, secondary to UC, diag. on 08/20/2010)

I had my spleen out 3 years ago. I have had no adverse effects. I have had two colds in that three-year period, which is about normal for me. I do make sure I keep up on the recommended immunizations, which greatly reduces the risks which used to accompany splenectomy. For me, it did fix the ITP for now.

I won't tell you that it was a bad decision, because some people find it to be necessary for their own reasons. Obviously, you did.

But I also wouldn't say that a spleen isn't necessary. Yes, you do need to be very vigilant regarding fevers and you do need the proper vaccinations recommended for those who are asplenic. Just stay on top of things, okay?

You might also want to be aware of this:

www.ncbi.nlm.nih.gov/pubmed/18334267

bloodjournal.hematologylibrary.org/cgi/content/full/114/14/2861

I'm mentioning it because it's one more thing you wouldn't want to know after the fact.

my son had a surgery in ucla as well in 14/28/10, they told me the same, so many doctors decided to remove my son's spleen , his count jumped to 600k and started dropping after 4 months , he is 17 years old , itp looks like a game , something works for some people and can't work for somebody else, what can i say,

I still have mine , so i cant give u any advise regarding that, but I'm sorry it hasn't worked for you. It is very personal decision to make and at the time u thought it was the right one, so nobody should judge your decision cause we haven't walked in your shoes. The doctors should have told u all the risks of infections and the need to see a doctor even for a simple cold before u made your final decision. One piece of advise I could give u is to always ask questions if your unsure about something or don't think they have given u all the necessary info and make sure u research things on your own as well. Having knowledge about ITP and all the treatments available give u more power to be able to make well informed decisions.

Zerroh, welcome to the "family"! Sorry you had to find us, but you'll get lots of support, advice and friendship.

Now, as to your splenectomy. I waited two years after being diagnosed before agreeing to it. I won't say my hema dr. pushed for it, but he did mention it at a few appointments. He couldn't say for sure that it was my spleen that was causing the problem, so I said no. I finally agreed because I wanted off the Pred and had tried everything available to me at the time. It didn't work. I won't say I'm upset that it didn't, but we are disappointed. I have only had one really bad cold since then. I'm not one to run to the doctor with a sore throat or fever; I just ride them out. One thing to keep doing now is getting your flu shot and pneumonia shots. There is a chance your counts will go back up, so don't get too discouraged! It will get better. Keep posting here with any questions you have. We're here for you!

I followed your path in 2001 after sitting @ 0 for weeks and being refractory to Pred and anti-d. IVIg did "work" for two weeks. In my case maintaining "awareness" of fever has been fairly easy. I was anxious for the first few years every time I had an illness but eventually it has just been a part of the process. Get ill, closely monitor my temp. I've been blessed to never have an episode so it has been a non-event for nearly 10y. I pray you will have a similar experience - yes it can be that uneventful.

My splenectomy (in 2004) didn't work either, and although I would RATHER (1) it had worked or at least (2) I still had my spleen, I haven't felt in any danger because I don't have one. I am quite careful about washing hands and using hand sanitizer and basic stuff like that. I haven't noticed any increase in illnesses of any kind.

Thanks guys for all the replies..

I guess my major issue was the fear of dying because I didnt have a spleen, (something I didn't think was possible before surgery), and also what you guys look for now that you dont have a spleen; fever, sore throat, etc. But it seems you all seem to be doing fine and the key is to just keep up on the vaccines and being aware of ones temp./throat when you get ill and go to the ER if it gets in the danger zone. I'm going to get my hemo to precribe me with antibiotics to always have on hand, if for nothing else, at least for peace of mind.

There is good news though, I just got my results from my last platelet count and its at 172k.. Why? I have no idea.. Will it stay there? Who knows.. But I have a feeling it will. The last count of 44k might have just been an error..

Anyways, I see my hemo tomorrow morning to see what to do next and to talk to her about some good old antibiotics to keep on hand at all times.

Thanks again guys, I'll keep in touch!

P.S. I have a friend of mine that had his spleen out at 5 yrs old and he is 24 yrs old now, as am I. Should really talk to him about being asplenic when I get a chance..

I am somewhat curious. Did any of your doctors explain to you that in the case of a splenectomy failure that it's the liver that starts taking over the destruction of platelets? I always wondered if they actually tell people that.

patti

yes they did patti, but my son decieded to do it because he thought it could be put him in remession even for few years, but unfortintly it didn't, he had the surgery the end of april/2010 , and jumped to 630k in 3 days , and dropped to 400k after one month, and around 350k for the next 2 month, and it dropped to 35k and then jumped up again with no treatment , to 600k , but on the labor day , i had to take him to the ER , count was 2k again, ivig, count up to 600k , but his doctor need to give him retuxmab,

I had my spleen removed 4 years ago.The antibiotics made me sick.So now I just keep them for over the winter period if I need them.I try to live a normal life just as I did before spleen removal. So don,t dwell too much on it you will be fine. good luck.

Hi,

I am spleen less now for 9 years!! Everything is good. I think you know your body best if things are bothering you then have it checked out otherwise I wouldn't worry too much about it. Also I think doctors as there job always tell you the worst case scenarios or if you read to much about it on the web that might scare you too. Its not as bad as people make it seem. Best advice is wash your hand as often as possible and live you life normal.....thats what I have done and it has worked for me.

Hi there and good that you joined us.

I have been without a spleen since 1995 - let you do the maths for the number of years that is and my story is a warning to every splenectomy patient!

I was in a good practice at first and they instructed me when I needed to come to the doctors. I was told to go at first sign of any infection and was given antibiotic cover. Whevenever I went on holiday they gave me a prescription to take with me with the promise I would use it whevenever I got an infection. They were brill.

I moved area and moved practices (am english by the way). I wasn't educated enough about life without a spleen and within five years of moving area I contracted Phuemuo (spelling) meningitis. I was on life support for 3 days and in hospital for a fortnight - (2 weeks). Sent home without any follow up. I built up my strenth only for 18 month later to contract Phuemonia which very quickly developed into Septicaemia (blood poisoning) which I had the stage worse and had septic shock. I hadn't eaten for 6 weeks and was being presribed ensure drinks without the GP asking any questions. He only did a blood test because I was insisting it was anemia.

I was taken to the hospital with half an hour left of life and although I wasn't on life support this time, I was told am very lucky to be here and the horrors of septic shock - via strong antibiotics I wont post because we are all different and wouldn't want someone to be scared. Mainly hullcinations at times. Though was so weak afterwards.


Septic shock was from the Meningitis. All of which may have been easier if I was given proper long term after care. That GP claimed he didn't know I didn't have a spleen. No one had told me to say so, every single visit. It was on my notes so thought that is enough. No. One has to say so at every single visit to be properly treated.

I am now on lifelong Penicillan which has its own issues. If I start to shiver and feel unwell I to ring an ambulance. Which has other issues at A&E whilst they sort out that yes as a splenectomy patient am meant to be there. Different doctors have different attitudes obviously.

Yes we do need our spleens. Without them we have lower immunity. We have to take extra care of infections etc. We cannot catch Malaria I was told. They can give us the treatment and we may be okay. But if they start to treat it and it affects us then they cannot do anything about it apparently but this was told to me back in 1995. Things may have moved on. There are certain occupations where we are not welcomed I believe like the army and I noticed police force etc Working in a classroom of 3 year olds be hard because colds spread like wildfire and it takes 'us' longer to get over them and the risk of infection getting into the bloodstream is higher.

The main thing to be aware of is infection. Don't hang about and get it treated straight away. If you are shivering etc due to infection dial the ambulance show them your splenectomy card. In England we are given Splenectomy cards. If haven't one then sign up to the medic alert.

life without a spleen is possible - just at more riks of infection and the dangers to infection specially Phuemoccocal infections.

Zerrohz,

I wouldn't say that having your spleen removed was a bad decision. Given you situation and the information you had there wasn't much else you could do.

Prednisone doesn't work for me and thirty pounds later I consider it a swear word! My hemo suggested a splenectomy, but after doing some research I decided to wait. If there was a 100% guarantee that it would work, I would have to give it serious consideration, but the reality is that it doesn't work for everyone (as you are well aware) and there are no long term guarantees.

My biggest issue with splenectomy is that there are certain vaccines that I will not be able to get for international travel. If I had the operation and it didn't work and it kept me from traveling to Africa I would be fuming! So, I tried Rituxan and that didn't work for me, either. Right now I'm playing "wait and see". I do respond well to IVIG, so if my counts go below 20,000 I got in for a boost.

The most frustrating thing about ITP is that there are no guarantees; everything is trial and error. Unfortunately some treatments (i.e. splenectomy) are not reversable when you discover they're not working.

Just remember you're not alone in this. We're all weighing decisions and learning to live with the consequences of those choices. For me that has meant learning to live with counts in the 20s for the majority of the time. That is a sacrifice I have chosen to make. Thank goodness I'm not a professional football player!

Blessings,
Hauna

Had mine removed 10 years ago. My counts have ranged between 250k - 400k ever since.

As for illness, like others have said, just bevigilant. Get your regular vaccines, get your flu shot, be aware during cold and flu season.

I work at an elementary school and for the past year have been the back up nurse in the front office. I'm around a LOT of germs. My doctor has a fit every time we talk, but I haven't been seriously ill in years. When I do get sick I head to the doc at the first sign of a fever. It does take me a little longer to beat a cold or the flu, and it takes a bigger toll on my body, but its not so bad.

Lisa

I had ITP in 1984 at age 23, and back then, if the prednisone didn't work, they took out your spleen. As there were no alternatives, I didn't give it much thought. Went on to live my life and have had no major health problems for all these years. I am careful to keep up on my vaccines, and can be sure to get whatever bad cold is going around, but I am now almost 50, have had a child and work around children (and in a hospital environment) and have never felt "fragile".

The only odd thing is that I was recently diagnosed with erythromelalgia, where my toes get purple and painful -- I have been told that they don't understand it well, but that they think it's related to either the ITP itself or the lack of spleen. I actually came to this site to find out if anyone else has had this problem. So I guess I will post that question somewhere else!

Rhiannon, just curious if you got all of your vaccines before taking your spleen out? I have read about those diseases you got and they are pretty rare. Either way hope everything has worked out for you.

I used to post on the old forum with a different login, but it no longer works for me and I'm going to be posting here for the first time in a while.

I had my spleen out in August 2009 when I was 20 and my platelets have been high ever since. I was put on baby aspirin for a few months and that brought my platelets down to high-normal levels, but I haven't been taking them for a long time now and my platelets are still fine (although a little lower than they were). I only had ITP for a few months before getting a splenectomy, but it was recommended as the next course of action after prednisone and Decadron by both of my hematologists. One of the additional reasons I got the splenectomy before my junior year in college was because I planned to study abroad and engage in various other activities. Treatments like Rituxan weren't recommended for me, but I also didn't want to be tied to a weekly treatment with a relatively low chance of success right before a semester abroad in Europe.

After I got my spleen out, it took me a long time to recover because of blood loss during the surgery (I had taken steroids right before but there were still some complications), and I had to do most of the recovery during my first semester of junior year. I was absolutely paranoid about getting sick during this time, especially because I spend one night of every week sleeping on filthy dorm room floors for debate tournaments at schools around the country. This was also right at the height of the swine flu scare and my roommate wasn't careful at all about maintaining her health (she ended up getting swine flu and I left our room for four days and didn't come back). I wasn't prepared to give up debating or to switch rooms, but I brought hand sanitizer EVERYWHERE, was more careful than ever about keeping my pillowcases and laundry clean, carried a thermometer with me to make sure I wouldn't get a fever unawares, etc. I also became way more about vigilant eating well, getting a full night's sleep during the week and avoiding schoolwork-related all-nighters and I also completely quit drinking for a time (although I'd never been much of a drinker anyway). Surprisingly, I didn't get sick during that semester even though I had typically gotten colds every single other year during November or December. I then went abroad to Germany (with just-in-case antibiotics in tow for my periods of travel to other parts of Europe) and was also healthy, but I did struggle more than ever with seasonal allergies and also got my first sinus infection. I've gotten my allergies under control since then after two recurrent infections, and other than that, I have not been sick or even feeling bad much at all since the surgery.

I do think about getting sick a lot and I'm still extremely cautious in most ways, but I've found that committing to a healthier lifestyle has really helped me. I keep my allergies under control, exercise and eat well, and avoid getting sick as much as possible. I've made some changes, such as getting my flu shots and studying in my room instead of the library full of coughing college students, but they've been minor and easy to deal with. I do occasionally have health questions that may be related to ITP (such as a strange and small rash I've been sporting for a week now), but on the whole, I'm healthy and I had a fantastic semester abroad and I don't regret getting my spleen out at all.

I hope this helps! I'm now 22 and I've been without a spleen for almost two years now - here's hoping for many more healthy years without any relapses.

I had my splenectomy almost a year ago and just got my first cold. Although I went to my doctor right away, he wouldn't give me antibiotics. It took another week to get them from my hematologist. They waited till I was coughing up green stuff. I'm curious to see how this cold will be different from all the others before this. I was hoping that getting my spleen removed would nip the ITP problem, but it did not. I also did not understand the implications of not having a spleen, but I don't regret having it removed because if it had worked then That would've been the end of it. I would have always wondered if that would've been the way to go had I not had it done. I had a friend that it worked for, so I was optimistic. C'est la vie. Anyway, I have changed my lifestyle for the better. My husband did a lot of research and it turns out that eating better and taking good care of yourself go along way when it comes to ITP Management. There are some natural remedies when it comes to Supporting your immune system, and I am very tired of all the pharmaceuticals that the doctors are pushing down our throats. I just switched doctors and I'm happy to have found a wonderful dr that really cares about the amount of medication I am receiving. My other doctor just pumped me with medications in order to get my numbers up, but it's not about getting my numbers up, it's about finding a balance. I have been on prednisone for year and a half and absolutely must get off of it. I am on 20 mg now, and our plan is to lower it extremely, extremely slowly. We are going to reduce it by 2.5 mg every four weeks. (My numbers bounce between 2,000 and 115,000 - very refractory.) If I find that something is working well I will post it here, but other than that, we are all on this journey together. I wish us all good luck and peace! Kara Ps – Be optimistic, it's most of the battle!