Hip replacement surgery

[Oscarsboy]

Has anyone had hip replacement surgery with ET jak 2 , on hydroxy and aspirin? I'm due for this in a few weeks with a pre op assessment in 2 weeks time. Surgeon has been made aware of Et situation. I just wondered if anyone has encountered any problems or issues, or whether the procedure was straight forward. Any thoughts would be very welcome.

[Pounds11]

Hello. I had hip replacement surgery in Dec of 23. I’m ET JAK2 and am 78. It went extremely well. Was on blood thinner for 2 weeks after the surgery. Before the surgery my Stanford MPN specialist upped my hydroxy from 5 a week to 7 a week to get my platelets in the 300s. They usually run in low 500s which is fine but wanted them lower for surgery. Other than that nothing out of the ordinary. I’m now pain free-so glad I did it. Just do all your exercises and you’ll be up and about in no time. Good luck!!! Marti

[Oscarsboy in reply to Pounds11]

Thank you so much for your reassurance. I'm grateful for your encouraging reply.

[Mazcd Partner MPNVoice]

Hi Oscarboy, I have ET (diagnosed in 2003) and have been taking Hydroxycarbamide since 2008, and also a daily aspirin. I had a total hip replacement in May last year, such a difference now, no more pain! I would advise that you ensure that all the hospital teams (your haematologist and orthopaedic surgeon) talk to each other about the operation and your ET and medications, right from my first appointment with the orthopaedic surgeon, my ET and medications and my pre-op and post-op recovery were discussed and then followed up with my haematologist, in fact they had communicated with each other before my first appointment.

Both teams ensured that I had clear instructions pre and post-op regarding my Hydroxycarbamide and aspirin, and other blood thinners I needed to take for a couple of weeks after the op. Your orthopaedic surgeon and your haematologist should liaise with each other to advise you about your meds, pre and post-op, and advise you accordingly as to whether or not you need to make any adjustments, and whether or not you will need any blood thinners post-op. The advice I was given about stopping my Hydroxycarbamide and continuing my aspirin was specific to me, so not necessarily the right thing for someone else.

And also make sure that everyone in the hospital knows about your ET and meds, it was very clear on my notes and all the nurses on the ward, the anaesthetist and the team in the post-op recovery ward were all aware and discussed it with me, which was very reassuring.

Post-op recovery for me was fine and went very well, I was up and out of bed a few hours after the op, and walking on crutches the next morning and back home in the afternoon. Make sure you follow the advice you are given about post-op recovery, and do the exercises, they really do help such a lot. I was amazed after the op that I no longer had any pain in my hip, oh the joy, the relief really is immediate, I did have some pain and tenderness, but that was from the op and was expected, but good pain relief helped with that.

For me it was a very good experience, with a fantastic outcome, no more pain, and I hope that it will be the same for you.

Best wishes, Maz

[Oscarsboy in reply to Mazcd]

Hi Maz. Thank you so much for all your helpful advice. I have informed the Orthopaedic Consultant doing the surgery, as he said he knew a little about PV and thought sometimes that and ET crossed over. I have given them my haemo consultants email at Darent Valley whom I am under for medication and follow ups. I did see Professor Harrison last week for a review, the day before I was seeing the Orthopaedic Consultant so I was able to speak to her about it, and she said there should be no problem, again provided all obs are ok. Do you know how far before the surgery for example another blood test should be done? I am having pre op assessment on 29th april and the op is then likely within a 2 week period. Would they need to be done again, as the wait time to get them done at the hospital by appointment needs to be at least a couple of weeks ahead as they get very full up. I do have quite a bit of anxiety over how this is all going to work, and whether they will actually communicate with each other, and how I ensure that happens. I meant to ask also did you have this carried out by spinal block? Thanks so much for you help.

[Mazcd Partner MPNVoice in reply to Oscarsboy]

hi Oscarboy, you are welcome. I can understand your anxiety, but they will have your notes which will have details about your PV and MPN medications, and just keep reminding everyone that you have PV, they won't mind.

With regards to the blood tests, I had mine done at the pre-op assessment about 2 weeks before the op and then they were repeated at the hospital on the day once I arrived on the ward, they also did other did my blood pressure, so it may be that they will re-do them on the ward. I did have the spinal anaesthetic and had a very thorough and detailed discussion with the anaesthetist about it on the ward so he was able to reassure me about it, and then once down in theatre ready for him to do it I felt more at ease, it was just him and his assistant in the room and they were both great and talked through each step and made sure I was nice and calm and relaxed.

I hope that all goes well for you. Best wishes, Maz

[Oscarsboy in reply to Mazcd]

Sorry was a bit misleading there I have ET Jak 2. It was the surgeon who thought that ET and PV sometimes crossed over! Thank you Maz for all your information. x

[Oscarsboy in reply to Mazcd]

Hi Maz I just thought I would touch base again as I am now 3 weeks exactly post op surgery and things are moving along seemingly well. I did have the spinal anaesthetic too. I have a physio assessment on Thursday. However I have a query which I wonder whether you can throw any light on. I have a haemo face to face next week as part of my routine three monthly checks on Hydroxy etc . At the moment I am also having to inject with fragmin every day (leaving off aspirin) for 5 weeks and still have l0 days to go with that. I had my normal blood test at the hospital yesterday ready for my f to f next week, and have discovered that my platelet count has virtually doubled from those of my pre op assessment, and the bloods taken a week before my surgery where they were around 370. It has been a huge shock to find this out today as I have had no further symptoms. When I spoke to the unit at the hospital earlier, they did not know I was only 3 weeks today post op from major surgery, and it appears this can cause a raise in platelets due to the trauma to the body and all the healing that needs to take place. Therefore more blood checks are going to have to be done over the next few weeks to monitor it and see if they start to reduce. Do you remember whether you had this same situation occur, or whether you have come across it before. It would be interesting to know. Many thanks.

If anyone else has any experience of this occurring, I would welcome your comments.

Many thanks.

[Pounds11 in reply to Oscarsboy]

I just looked at my results from after my hip replacement. Three weeks out my platelets were 390 very low for me and then 5 weeks out on hydroxy 7 days a week they were 489. I cut back on my hydroxy to 5 days a week and stayed in the mid 500s to now. So to answer your question I didn’t have a spike. Are you taking the hydroxy?

[Oscarsboy in reply to Pounds11]

Hi, thanks s much for your reply. Yes I m on hydroxy and been on the same dose and stable for quite a while now. However this surgery has seen a huge spike rise. I had three blood tests done within two weeks of my surgery all around 370 ish, now 677 as of yesterday.

[Mazcd Partner MPNVoice in reply to Oscarsboy]

hi, glad everything has gone ok for you. Yes my platelets did rise, I am sorry but I can't remember the numbers, but my haematologist and the orthopaedic surgeon both said they probably would as it is due to having surgery and the trauma and healing, and told me not to worry, so I didn't. I hope all goes well with the physio. Best wishes, Maz

[Oscarsboy in reply to Mazcd]

Ah thank you Maz, thats very reassuring.

[K-itty]

I had hip replacement surgery in 2016 when I first was diagnosed with ET/PV. Although I was not taking anything at the time, the surgery and recovery were pretty straight foward with no complications with either.My surgeon was aware of my recent diagnosis and didn't seem there was cause for alarm. Again, this was early in my diagnosis and my numbers were fairly low.

Good luck with your surgery. I'm sure all will be well.

[Oscarsboy in reply to K-itty]

Thank you so much.