essential thrombocythemia and hip replacement surgery

[Duck33]

Hello everyone, I'm writing on behalf of my 75 year-old mum. She was diagnosed with ET in October and is on chemo pills for it. Her platelets have come down and she's within the top of the normal range now. Mum has a bad hip and has been recommended surgery, but she's very worried about how the ET may interact with surgery, especially how it may cause clotting problems and a DVT. Please, has anyone out there had this surgery and can share their experiences with my mum. She's in a lot of pain with her hip and would like to have the surgery. She's just very scared. Thanks so much in advance.

[hunter5582]

I have not had hip surgery, but have had four other surgeries in the last several years. I have PV with both erythrocytosis and thrombocytosis. I did fine with each of the surgeries. What is to be expected is some degree of reactive thrombocytosis post surgically. This is the body's natural response. It is normal for the body to react to injury, bleeding, and surgery by increasing platelet production. The risk may actually be for hemorrhage rather than thrombosis (people with ET are at risk for both). Post-surgically the care team will need to monitor for both.

Many doctors are not familiar with managing MPN patients post-surgically. That is why consultation and collaboration with a MPN Specialist as part of the care team is so important. The MPN Specialist can consult with the care team about how to best manage your Mother's case post-surgically.

Depending on the type of surgery, I have taken heparin post-surgically, which is a standard treatment to prevent thrombosis. The other thing to monitor for is the potential for increased risk of hemorrhage. Not all doctors know to watch for that with ET patients. Pre-surgically, I always do a CBC, CMP, and a von Willebrand panel, including prothrombin times/INR. The latter gives a measure of the time it takes for a clot to form in a blood sample.

Hopefully your mother already has a MPN Specialist on her care team rather than a regular hematologist. This consultation is really important in managing surgery for someone with a MPN. Just in case, here is a list.

mpnforum.com/list-hem./

Hope all goes well for your mum.

[Duck33 in reply to hunter5582]

Thanks so much for replying. So kind of you, and such useful information. Mum doesn't have a specialist, unfortunately. She has a regular haematologist. The list of specialists that you included is very useful, thanks. I'll take your message to her surgeon when next we see him. Thank you again. I'm so grateful. I feel the surgeon has been a little quick to say there won't be any problem for Mum to have this surgery. Hopefully he's thought through all the points you raise, but it'll be good for us to bring them up with him, nonetheless. Thank you again. I really appreciate your help. take care and all our best wishes.

[Annula in reply to Duck33]

Lots of luck to your mum-I can see myself needing hip replacement too in the future. Hunter's knowledge & advice is invaluable - thank you!If the team are on the ball things should go well..

[Paraic2021]

Hi I have PV and had a Major Bowel Operation last August. I had incredible Surgeon at Southend Hospital with no clotting issues i am on Clopidogrel also. Dont be afraid to ask as many questions to your SurgeonI know we are all different but thankfully I was ok.

[Duck33 in reply to Paraic2021]

Thanks so much for your reply. It’s really good to hear that your operation went well. I’m so glad for you and It’s very reassuring for Mum, to hear that, too. I’ll definitely make sure we ask a lot of questions. Like you say, it’s so important to feel confident in what’s happening. Thanks again for getting in touch and all the very best to you.

[Orangeboykitty]

I have PV, diagnosed in 2013. I had hip replacement surgery in 2014, a result of avascular necrosis caused by PV. The surgeon and my hematologist communicated with each other (very important!) and it was decided that at the time my platelets were too high and had to be lowered before the surgery, so I was put on Anagrelide, which worked very quickly. After the surgery I had to take blood thinners for a little while. Long story short, I'm 75 years old and can walk without pain.

[Orangeboykitty in reply to Orangeboykitty]

Forgot to say, I had no problem with clots.

[Duck33 in reply to Orangeboykitty]

Thanks so much for replying. Very reassuring to hear your positive experience. I've passed it on to Mum, who is very grateful for you taking the time and is glad to hear it went well, especially as you are the same age as Mum. Thanks so much. We're making sure the ortho consultant is in touch with her haematologist, today. As you say, that's so important. Thanks again and take care.

[ciye]

I have as 2 lung operations in the last 18 months and had no I'll effects from either. The cardiothorasic team liased with haematology.

[Duck33 in reply to ciye]

Thanks so much for getting in touch and really glad it all went well. That's great to hear. I'll pass on to Mum. Thanks again and take care.

[Arty16]

I had a hip replacement last year. I made sure my hymotoligist and the surgeon talked to each other. They were great the surgeon was very aware. He did blood counts every day after and consulted with hymotoligist. No blood clot issue for me took all meds until day of operation. Restarted next day. I did end up having a blood transfusion that was my only issue. It has really changed my life no pain and can walk easily. Just communicate with your doctors

[Duck33 in reply to Arty16]

Thanks so much. As you say, communication is so important. We're getting in touch with both consultants today to make sure they're in touch ahead of the op, and we'll check in about when to stop/re-start her meds around the op. Really glad you're walking pain-free now. I really hope Mum gets that relief soon. Thanks again for taking the trouble and take care.

[Peachjoy]

I have ET, and I’ve had 3 hip replacements. (Twice on right side, revision surgery is a very major op)My platelets throughout and since ET diagnosis have hovered between 620 and 720.

My only treatment for ET so far has been mini aspirin. I had to stop taking aspirin a few days before each surgery.

My platelets did rise to around 950 within a few hours of surgery, but each day they reduced and returned to my normal fairly quickly.

I had to self inject with Heparin daily for a month after each surgery.

There was communication between my surgeon and haematologist before and throughout (in different hospitals)

I recently asked my new MPN specialist if I would be able to have further hip revisions if I was on HU (an on going current discussion for me as I’m now 62) I’m aware that hip replacements can need re doing after 15 to 20 years. (My current hips are 7 and 8 years old).

The specialist said that it would be ok for me in the future if I was on HU.

I highly recommend seeking an MPN specialist, like Hunter has suggested. Hunter advised me on this matter a short while ago and I am now feeling very reassured by having some specialist care.

I send your mum good wishes for her hips. I know and understand the grim pain she must be in. Surgery really changed everything for the better for me. Being more active will be very beneficial to her long term.

[Duck33 in reply to Peachjoy]

Thanks so much for your reply and your kind words. I'm so grateful. I've passed on to Mum your experiences and good wishes. She'll be so pleased to hear that it all went well for you. That's very reassuring. The consultant mentioned Heparin, too, thanks, so it sounds like Mum might be having that. Also the idea of a specialist is a very good. Thanks to you, and to Hunter for sending us that list. We're in Wales, so I'm not sure whether that will be possible, though we saw one of the experts is in Cardiff, so we're looking into that now. Thanks again and take care of yourself. It's so good to know she's not alone in this.

[Heidi-W]

HI. I had a hip replacement 4 years ago aged 41 with PV.. The orthopaedic team were happy to do it once my platelets were down to a reasonable level so I was started on hydroxyurea then. Re the clotting issue usually your mum will be put on a blood thinner for 4-6 weeks after. I was put on oral apixaban which is a twice daily tablet and was absolutely fine to take. I think the fatigue from our conditions can may recovery bit slower from an energy side of things but my op went well and wound healed well so hopefully your mum will be ok.. Do send our good luck to her.

[Duck33 in reply to Heidi-W]

Thanks so much for the reply and the lovely words. Mum's very grateful. The fatigue is definitely an issue for her with ET, so I think it may have an effect on her immediate recovery. But great to hear you've come out the other side and it went well. Thanks so much for that reassurance. It means a lot. Stay well, and thank you again for replying.

[Balenciaga]

I was diagnosed with ET in 1995 & have been on Hydroxycarbamide ever since. I had my hip replaced in 1996 (aged 35) &, at that time, had to have my 'bleeding time' monitored before I had the surgery; I had it re-replaced in 2018 & 'bleeding time' was no longer a thing, but both times I had Heparin injections for a while afterwards & also was advised to stop taking Hydroxycarbamide a few days before surgery & for the hospital duration. Both times, the surgeon & haematologists spoke to each other beforehand; neither time was my surgeon (same guy for both ops) scared about my risk of bleeding/clotting.

In between those years, I have had about 9 other operations; I have always informed the surgeons about my ET &, although they have usually never heard of it, it has never fazed them & they have spoken to my haematologist if they felt they needed reasurrance about dealing with my condition.

I have always been on a high dose of Hydroxycarbamide & still always had/have a high platelet count. When I had my hip done in 1995, I was in hospital for 14 days; in 2018, I was only in for 5 days... please tell your mum that although it seems scarier for patients like us, it really isn't nowadays as hip replacement is a fairly routine operation & anaesthetics are far less debilitating than they were; she will be awake & drinking tea before she knows it & the main thing is, she needs adequate pain relief after.

I wish her all the best; it will be life-changing xx

[Duck33 in reply to Balenciaga]

Thanks so much, Balenciaga, your kind words are very reassuring. The anaesthetic is one of the worries for Mum, as she fears she won't wake up. But the surgeon says he'll probably use a spinal. Good to hear the difference in your two hip-replacement experiences, and how much the operation has moved on over the years, and as you say, has almost become routine. That's great to hear. We're trying to make sure the surgeon is in touch with Mum's haematologist - they're at two different hospitals, but hopefully it'll work out okay. In the meantime, your words are a real comfort to Mum. And if the operation relieves her pain it really will be life-changing for her, as she's pretty much immobile now. And there's so much she wants to do in life. Thanks again and stay well. All best wishes from us both.

[Fizzydog]

Hi I had hysterectomy surgery I was given extra blood thinning injections in my tummy and I had leg devices that pumped up as I wasn’t allowed out of bed after my operation. I think with a hip operation they encourage you to get up very soon afterwards as my mum had one recently. Having seen the pain my mum was in before her hip operation and the relief afterwards I would say it’s definitely worth your mum having it done. The hospital will ensure the extra measures are taken regarding her ET like mine was. Wish her good luck for the operation from me x

[Duck33 in reply to Fizzydog]

Hi Fizzydog, thank you very much for replying. So glad your op went okay. And thanks for the kind words for Mum. She really appreciates them, and so good to hear the operation has been a success for your mum. That’s very reassuring for us to hear. Thanks again and take care.