I was diagnosed with essential thrombocythemia in April which meant that urgently needed and planned hip replacement surgery had to be put on hold. My treatment (with aspirin and hydroxycarbamide) went well and I was cleared for surgery by my haematologist. My (private) surgery was scheduled for 11 August but was cancelled by my surgeon yesterday as he was concerned about my blood/chemo status and was consulting their own haematologist. I got this from his secretary and am waiting in desperate, painful limbo for more information and some sort of plan.
Does anyone out there have experience of joint replacement surgery with Essential thrombocythemia (ET)? How did it go? Feeling very alone just now
Dear @Prudie - a huge welcome to our forum. I’m so glad that you’ve found us.
I’m very sorry to hear about your Essential thrombocythemia (ET) diagnosis and the knock-on effect this is having with other medical needs. It’s understandable that you feel in limbo as you wait for more information and a plan. It can be very overwhelming, but let me reassure that you are definitely not alone.
I have a different blood cancer, but hope that others in similar situations will share their experiences. Here is also a link to someone with Polycythaemia vera (Polycythaemia vera (PV)), another Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)), who had a knee replacement that you might find helpful - Knee Replacement
You can also contact one of our wonderful nurses over the phone or via email on 0808 2080 888 or via support@bloodcancer.org.uk if it would be helpful to talk things through.
Take good care and do let us know how you get on. We are all here for you.
I’m pleased to say that I had a useful conversation with my surgeon yesterday and now understand and accept the reasons for delaying my surgery, though I am desperate for it to be done. He explained that my risks of clots and bleeding are “through the roof” and he has discussed my case with the haematologist at the hospital (who happens to have a special interest in MPNs). He has recommended extreme caution in assessing the right length of time to stop the hydroxycarbamide before the surgery and the effect on my platelets. Evidently, the medication can cause the skin to break down, risking wound healing and deep infection, so care has to be taken with timing. Also, especially in someone recently diagnosed, coming off the hydroxycarbamide can cause a sudden large spike in the platelet count. It all means that the perioperative care has to be very carefully planned and calibrated for the individual patient. My surgeon assured me that I would be sorted out, but that we would have to proceed very carefully and the haematologist will be part of my team.
I am feeling much more positive, in spite of the pain and immobility, and think I may also get a new haematologist, more au fait with MPNs, out of this.
My own research since this happened suggests that there are no generally agreed protocols or guidance for managing perioperative care for those of us with a Myeloproliferative neoplasms (MPN) (the surgeon agreed with this) and such guidance as there is just recommends a multidisciplinary approach and great care. I feel I am now getting this. I’ll also offer myself to the new haematologist as a case study or a guinea pig, in case he’s interested!
I’ll keep posting as I go on this voyage of discovery.
Hi @Prudie - I’m so glad that you’ve had these conversations and are clearer on the whys and the plan going forward and are feeling more positive as a result. It’s not easy but this all helps.
Please do let us know how you get on. We are all thinking of you x
Glad to see that your doctors are taking a multidisciplinary approach, with the surgeons and haematologists working together. I had knee replacement surgery after diagnosis with Essential thrombocythemia (ET) , the hospital (UCH London) co ordinating with the orthopaedic surgeon to agree on when my platelet levels had reached a safe level for surgery. I am on Interferon, so did not have the possible skin healing issues you face, and was able to continue, timing the weekly injections before and after the op. A nurse on the ward did my injection the day after the op, when I was on my way home, (in my arm, which I didn’t enjoy!) I had to stop the daily aspirin.
The anaesthetist was really engaged- took a great interest in the Essential thrombocythemia (ET) and in what was going on in my blood and bone marrow, put the biggest cannula I have ever seen in my forearm just in case there were any issues. The op went smoothly. I had to take a blood thinner for 10 days after the operation, as is normal with joint replacements I think.
Very best wishes with your operation when you are ready for it and a speedy recovery to improved mobility again. Fiona
Hello to Fiona and others who were kind enough to enquire about my hip replacement saga. I thought you might like an update.
I had my surgery on 10 November. It went well, though the surgeon was concerned about how easily I was bruising. I suspended the hydroxycarbamide for 5 days before the op and five days after (because of the risks of the treatment for healing). Superficial healing seems to be going well. No signs of swelling or bleeding and the dressings came off clean as a whistle after 2 weeks. I was given a Pico dressing (an electrical gizmo that applies a mild suction to the wound to help closure) and heparin for 10 days.
My platelet count bounced from 340 to 542 after the surgery, but my haemo team were not greatly concerned by that. I’m having another blood test this Tues and another two weeks later and we’ll see how the numbers are going.
I’m so relieved and delighted to be free of the dreadful pain. It’s great to be improving every day instead of deteriorating. I’m looking forward to getting on with my life and the Essential thrombocythemia (ET) just grumbling away in the backgound, where it belongs.
It is going well so far and I’m following all instructions. I am being well looked after by my haemo team, but I do have to say, it’s mainly because I have been insisting on it. Throughout this year, I have had to advocate very strongly on my own behalf and any coordination between orthopaedics and haematology has been initiated by me (not helped by the fact that my teams are in different hospitals).When my surgery was cancelled in August, I had to practically throw a tantrum to get my haematologist to actively manage and monitor me to get me fit for surgery. He understood what I needed when I pointed it out, but until then there was no p;lan for regular blood tests, medication adjustments or anything else. Post surgery, it was me, not the surgeon, who brought haematology up to date. I even arranged my own blood tests and told them about it. They were very happy to pick it up and I’ll be seen in clinic in a month, but I do wonder how long I would be waiting for the follow-up if I hadn’t sorted it myself. I have heard from others that coordination between surgical and haemo teams is crucial in perioperative care for those of us with Essential thrombocythemia (ET), but that it rarely happens unless we push for it. I am lucky in that I’m a retired Dept of Health civil servant who understands the systems and am used to working with medics (and I know all about the pressures and silo working). I can advocate for myself, but have found it exhausting and I fear for those who are unable to do that.
However, it all seems to be working out for me so far. When I’m fully fit, I might explore what I might be able to do to help improve the situation for others.