ET and surgery

Hi all,

I have been told that I need to have surgery to have my gallbladder removed.  I am 35 and have ET, I take aspirin daily.  My platelets tend to be somewhere between 600 and 900.  My haematologist has been quite non-committal about the risks involved with having ET and undergoing surgery.  He said that there is obviously a higher risk for me and that the bigger risk is bleeding rather than clotting [although clotting is still a risk!] but that it was up to me.  I've been advised by my GP that there is no choice about the surgery as I'm risking long term damage if I don't have it done so I'm definitely going to do it.   I was just wondering what other people's experiences are about having surgery with ET .  I'm yet to have my first appointment with the surgeon but in the meantime I was just interested in what people in similar positions have found.

Thanks,

Kat

16 Replies

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  • Don't worry about it, I have had mine remover last year, no problems, my platelet are around the same as your so I would go ahead with it.

  • I had mine removed about 8 years ago, when I was in my 30's, before I was 'officially' diagnosed with ET. It was all ok. I wouldn't worry, as long as the surgeon and nursing staff are fully aware of your condition you will be fine. I would far rather have the op than be in the pain that I was in!

  • Hi, I am an ET patient from Romania. Since I was diagnosed I've gone through 2 groin hernia surgeries, while my platelets were around 800-900 at the time. The haem did a bunch of bloodwork before each surgery, instructed me to stop aspirin 5 days before the operation, to have coagulant shots few days after the operation and then resume the aspirin. Everything went just fine both times. First one was lap surgery, second one was open cut. Good luck.

  • Hi Kat - I had my gallbladder out 12 years ago with ET and have had 3 operations since without any issues - just make sure your haem and the surgeon agree a treatment plan. Post-operatively for me it involved heparin and inflatable socks to minimise the risk of DVT - a bit weird but OK..! Hope all goes well, Andy

  • Hi Katyak, obviously everyone reacts differently but I had to have knee surgery last year and my haematologist wanted my platelets between 200-300 before she was happy. I have ET and JAK2 and am now on HU 500 mg daily + aspirin but was on a much higher dose to bring my platelets  down from 1000 to within an acceptable limit for the surgery. I didn't want the higher dose but neither did I want clotting or bleeding! It was fine. Good luck J. 

  • I need 2 knee replacements and am very worried about surgery, your post has reassured me a bit. My platelets had been steady around 350 for a while but have been climbing steadily over the last few months, I've had my hu increased so hoping that it will reduce again so I can have the operations as the pain is horrendous!

  • All the best for the operation.  Just make sure that your Haematologist and the Surgeon doing the operation decide on a plan together and then you should be fine.  Part of that will be deciding on when you stop and then restart Aspirin. Don't expect the Surgeon to necessarily know what ET is all about as it is not in his area of expertise. 

  • I have heard that platelets  can be so high they won't  clot and risk bleeding,  over million  rsnge.

  • I had tumours in my bladder removed in 2014 and my platelets sit around 600 - 800 with PV and no issues apart from the pain after my surgery with going to the toilet (but you won't have that) - I also have a friend who had gall bladder removed, no issues and probably did her a favour as now can't eat fatty greasy food :) Good luck! xxx

  • Hi Kat. I have ET too. Diagnosed last year. I am double your age, so feel lucky In that respect.  At this stage I am only  prescribed Aspirin 100mg. My recent platelet count was 750. They have been down as low as 635.

     Why I am interest in your comment is that I am booked for a approx 3 hour surgery in June. I have a pre assessment next month, which I gather will involve blood tests. I will take all my relative information to my surgeon . I gather the risk of clots is a concern. But hopefully by  waring compression  stockings during and post op, and administered a  drug called clexane, an anticoagulant, which is a step up from asprin. No doubt I will be told whether to stop my asprin pre op or not!! I do have feelings of concern about my pending op, but reading these stories gives me some reassurance.  I will be keen watch with interest Kat how it all goes for you. Thanks  Lyn

  • I hope all goes well with you Lyn,  I'll keep you posted if I hear anything useful and I'm glad that me posting this has reassured you a bit too!

  • Hello,     I'm trying to get platelets down.

    I am waiting a kidney embolisation,   don't worry,   be strong...

  • I had major surgery in February. With a lengthy history of blood clots  ( most were PE 's)  I was supposed to be returned to blood thinner ASAP after surgery. Even though I was at one of the best hospitals in the U.S .  the docs forgot. Fortunately I was paying attention.  So everyone needs to be vigilant and don't just rely on your docs. Katie 

  • How scary Katie - as you say, we have to make sure we know what is going on in case the doctors don't!

  • Hi Kat - I was diagnosed with early PMF last year and had to have my gallbladder removed at around the same time.  My platelets were consistently around the 850 mark and I had absolutely no problems.  I had an MPN expert and a surgeon who were both very happy to go ahead with the operation and although there are risks with every surgery I certainly did not feel that I was at any extreme risk at that time.  Hope it goes well.  I have never looked back since having my removed as was having real problems with it.  Lesley x

  • Thank you all so much for your replies - I do feel some reassurance hearing how other people managed surgery and having an MPN.  It seems like the most important thing is to make sure that all the medical people involved are aware of my ET so I will bear that in mind at every stage!

    Kat

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