I would like to know from anyone else that has had a splenectomy, if they are more prone to getting ill.

[NickyD]

Some medics say it makes no difference and others say you are more likely to pick up infections. What is the experience of anyone else that has ITP and has had a splenectomy.

[Elmarie_Potgieter]

Hi NickyD

I had a splenectomy in November 2013, and since the operation my whole family had flu, the cold or brongithis, yet I have not had any of those. I test my platelet count and infection rate (CRP) every 3rd week and so far I am totally normal. I also test my blood pressure and temperature regularly. I have not been on any medication since I was released from the Hospital after the Spelenectomy. My doctor gave me antibiotics to carry with me at all times, it's the same antibiotics I received for colds and flu before I had the splenectomy thus nothing special. This is just a "In case of emergency" stash. I think because of the splenectomy I do look after myself better and have started to eat healthy and do regular exercise.

[NickyD in reply to Elmarie_Potgieter]

Thanks for coming back to me. I take penicillin twice a day since having my spleen out. I eat much more healthily than before the op but that was to get rid of the 4 stone I put on from the steroids. I do have flu jabs each year. We all react differently don't we!

[swheels]

Hi, I had my spleen out when I was very young, I was 3 yrs old. I'm 43 now. I remember having Measles really bad and Chicken Pox, The symptoms were elevated, I had measles in my eyes, which meant I had to stay in dark rooms and the Chicken pox, well I had so many spots I was almost completely covered. I also have Penicillin V to take, this is mainly a back up although the hospital would like me to take it all the time, it can give me bad bouts of thrush so I have been having breaks from it. Mainly using it when I am ill, with viruses etc. My doctor said this would be ok as long as I doubled up when I was ill. Generally I have no effects from it but I have the flu jab every winter (although I missed this one, I will be getting one this October) and the HiB jab (combats viruses), pneumonia and meningitis vaccines every few years.

[NickyD in reply to swheels]

Hi Sweels, I am like you but I do take penicillin every day. I am lucky that I do not have any side effects from the meds apart from the appalling taste! I am a priority flu jab patient and make sure I get a jab every year. Some colds seem to last much longer on my chest.

[swheels in reply to NickyD]

Yeah I agree with the taste, down the hatch as quick as poss. I am also a priority jab patient but with the recent take over of doctors I think they just fell behind and I did try and get an appointment the week of the really bad storm as I had a throat and chest virus. I couldn't get an appointment for a week so I went to the walk in centre in Solihull. I was given time off and antibiotics. Still not feeling 100% but better than I was. All colds are different and some are more chesty, it just takes you longer for the immune system to kick in. Take care and summer will be here soon, thank god I don't get hay fever lol

Sheila

[NickyD in reply to swheels]

Hi Sheila - I too am relieved not to get hay fever. I do get tired and have to rest when I can. I try and put things in place to help me when I get tired but I still have to work. The bills need to be paid some how. Cant wait for the summer. I have to be careful because the mycophenolate I am taking means I am more prone to skin cancer........

Nicky

[swheels in reply to NickyD]

Ooh, not too much sun for you then, I had to be careful when they gave me Azathioprine tablets, they had a warning about the sun too. Yeah I get tired too, I work nights and some nights can be a struggle, especially if I do not get a good sleep during the day. Looks like we will have to play the Lottery and try our luck at winning a lifetime of no longer working......I wish lol

[NickyD in reply to swheels]

I run my own business so if I don't work I don't eat. It was a challenge when I was attending hospital three or four times a week. Sleep still eludes me at times, I wonder if it form the steroids even though I have been off them for some time now.

[Orchidlily]

Hello NickyD, I had a splenectomy in 2009 and take antibiotics twice a day. I was fine til this time last year when i was hospitalised twice in a month with infections that caused a very high and unresponsive temperature with rigors a relapse of ITP and Lupus flare. Fortunately I was OK after treatment, including the dreaded steroids again, and I've been OK since. What I want to know is how did you manage to lose all that weight, well done. I can't seem to shift my steroid weight gain.

[NickyD in reply to Orchidlily]

OMG the steroids!!!! I lost the four stone in two stages. The first two went by not eating for a family of four and the second two went by going to weight watchers and being very very careful. I hope not to go back on Steroids - I become a demented madwoman with lack of sleep and being manic all the time. Your weight will go. I left it for a year before I even attempted to lose the weight.

[22-patience]

I had a spleenectomy about three years ago. Knock on wood I have been healthy except for the ITP. Just sorry I had one as it did not help with the ITP.

[NickyD in reply to 22-patience]

I am so pleased to hear that you have been well despite the splenectomy (apart from the ITP of course), long may it last.

[gordontardio]

Thanks for this info. I am having to consider spleen cut. I know Nicky you're so dead set against it. But chemo did nothing for me, and at long term 100mg Aza, + 12.5 mg pred. I only get about 12k count.

Btw, I know I keep the preds to a minimum... and have had slightly higher dose. But there are things one can do to greatly reduce the hyper tension brought on by preds, which has been very good for me.

I need ideas please. thanks.