Knee Operation

[Superwoman]

Hi folks I am due to have a total knee replacement in December and I am a tad worried about it as I have ET and take Hydroxy and Asprin . The surgeon has been in touch with the Haematology dept and they have said that I must have my bloods checked two weeks before op well I have my pre-assessment tomorrow so then it will be another five weeks before the op. What I am trying to ask has anyone else had this done and was the outcome OK. I know that this type of operation is done all the time but I can't help but worry friends and family do not understand why I am so concerned, so if one of you lovely people could cheer me up that would be great, as I don't feel much like Superwoman at the moment.

[Shelly1960]

hi sweet I understand I go in for my op on my shoulder on the 10th and like you worried but know the hospital and consultant and gp been in touch to try and minimise risks hope your goes well will be thinking of you

[Karen1970]

Hi Superwoman. I'm due knee surgery and both the surgeon and the Professor have discussed my blood results and that they must be at a certain stage but that it is safe and I have nothing to worry about. They mentioned about having Clexane injection before and after to prevent DVT. I have PV and JAK2 positive. I hope it all goes well. These guys are trained professionals and they wouldn't put you at risk my sweet xxx

[karteeka]

hi superwoman, i have prv and take daily asprin. earlier in the year i had a plate inserted in my fibula to repair a fracture near the ankle . the doctors were aware of my prv and the fact that by design i am iron deficient- a ferritin of 3 despite a hb of 160- i specifically did not consent to a blood transfusion nor fe infusion even if i was symptomatic- i was reassured that there is little bleeding in this procedure but ive seen things go wrong before. it went well and i continued on asprin and had 40mg clexane post op for 6 weeks without ill effect except for bruising around the injection site. relax, and i hope it all goes well cheers karteeka

[Twinkly]

Hi ,,I'm in the same position as you ..I need a new knee on my right leg as I have a lump comes and goes now at the back of that knee, iv been offered but turned it down ,like you I'm worried at the risks involved ,I have p.v. And I'm on ruxolitinib .im on the Majic trial and am doing very well ..I would be so grateful if you would let us know of your progress ,I really do wish you the best ,hope it's a great success !! Twinkly ..xx

[Borage]

Hi Superwoman,

Good luck with you Knee op.

From my friend's recent experience, make sure you have enough analgesia to mobilise as directed. Most importantly, do not let anyone send you to a discharge lounge to wait for pharmacy before going home. Alison was stuck there for nearly 5 hours resulting in Deep Vein Thrombosis and near fatal Pulmonary Embolism.

I printed a sheet with clear information about my ET which was put in the front of my notes. Not all the staff will be familiar with the condition and the risks associated with it.

Also I keep a laminated card with next of kin, GP details, Haematologist, investigations, medication, allergies etc. It saves a lot of questions when you are feeling stressed and helps prevent errors.

Take baby wipes and antiseptic hand gel and use them frequently, and don't hesitate to ask staff politely to wash their hands if they have not done so before giving any care involving contact.

Remember never to shake hands with a physiotherapist, they can break fingers!

Best wishes,

Borage

[light]

Hi, I have ET with JAK 2+ and had total hip replacement today 10 weeks ago. Few months prior my ops I was off Hydroxy and started on Interferon Peg, and as my haematologist said it was important that my blood/platelets were all in good level. Yes I was worried too but both my Haematologist and Ortho surgeon coordinated all. I have done it in the same hospital where I am patient with haematology and ortho as they suggested. I am doing so far so good, doing well. Now I know that it was safe procedure and nothing to worry.

Wishing you well

[Superwoman]

Hi All, thanks for your support re my knee operation. Well this morning I was at my pre-assessment, which to start with went well, then I had to see a sister who has scared the life out of me, telling me that they may not perform the op at this particular hospital as I will need extra care as I could go on to have a heart attack, also will need a blood transfusion, and will have to come home with some kind of injection to give myself!!! to keep my blood thin, also told me that I would be in huge amounts of pain, and that I would need to wear surgical stockings for at least six weeks after, but I MUST do exercise to keep the knee mobile even though I will be in pain, asked her what kind of pain relief will I be given on coming home, and she said Paracetamol. Well had to come feeling like I needed a stiff drink, which I hasten to add I did not, only a coffee and thinking that I might just cancel the operation. It strikes me that some health care professionals just do not know what an MPN is. I am not some old biddy, as this is what she made me feel like or worse a child, I am young at heart keep fit and love life to the full despite the ET which I did not ask for, I do not give in without a fight, but her attitude has knocked me sideways, would not let me ask any questions and I had loads, so now really frustrated and do not know what to do so watch this space.

Thanks for your replies, its nice to know that there are people out there that know what we have to go through, and that we are not alone. Sorry to ramble on.

[OneSoLucky]

Hi there, I have ET and have had for 12 years. I had a breast lump removed in June and whilst it was not as major surgery as a knee operation I was still being cut open and being cut open means blood. As you know when you have ET with a high platelet count our blood doesn't necessarily behave as it should. That being said my count was in the high 600's when I went under the knife. All I had to do was go off the Asprin 5 days before the operation all else was fine. Surgeons get a bit "wobbly" when you have ailments aside from what they can repair. Try not to worry to much as stress doesn't help our condition, stay positive and imagine yourself pain free and walking tall after the op. Wishing you the Best of Health Kirsty xo

[lizzziep]

Hi, I have ET and am jak 2 negative, I am on HU and aspirin, my doctor wants me to have a knee replacement but I keep refusing as I am terrified of having the operation. The specialist haematologist nurse I see said if she was in my position she wouldn't have the op!! However the pain I get in my knee is really bad, I don't know what to do. At the moment I only take paracetomol for pain relief, I have had a steroid injection in my knee which is fantastic - for about 3 weeks then the pain comes back. I am hoping stem cell treatment will become more mainstream and that I will be able to have that instead. It is a scary op anyway without having the complication of an MPN. Hope all goes well for you.

[Nickyb57]

Hi, how awful that you weren't allowed to ask questions. I'd go back to my Dr and ask her/him. I had part of my thyroid removed 3 years ago so had to stop taking warfarin and had clexane injections before and after the op. It's not so bad, I'm not wild about needles, so I got my husband to help, I think he quite enjoyed it! The surgical socks aren't so bad either, just don't let anyone else see them as the are slightly reminiscent of Norah Batty! After the op they put my legs in what looked like blood pressure sleeves, it was great, a lower leg massage all night, maybe I'm odd, but I loved it. It sounds as if your nurse has failed to give you the facts you need, from my own experience the actuality is nowhere near as bad as the anticipation of what it will be like. Stay positive, arnica helps with inflammation post op. Hope all goes well for you.

[Borage]

Hi Superwoman,

I think your nurse works on the principle that if you prepare for the worst it will be much better than you expected.

Anti- embolism stockings, not a problem. You've managed thick new tights, they are not much worse.

Heparin injections, if like me you have a bit of tummy padding it is not too sensitive. The needle is short and very fine. It smarts afterwards for a few seconds, then it is done.

Huge amounts of pain is an exaggeration, and you are given more than paracetamol if you need it.

If it was as bad as she led you to believe no one would have it done, let alone go back for the second knee.

Like childbirth, the scare stories grow with each telling, yet many women have more than one baby.

Best wishes,

Borage

[Jocro]

Hi Superwoman, I had a total knee replacement 2 years ago and all is well. The hematologist advised the surgeon that I should stop Hydrea and aspirin for 1 week before the surgery so that is what I did. No problems at all.

I had ET diagnosed 27 years ago at age 50 and am still going strong, playing tennis and skiing even after the knee surgery. My best advice is to follow the recommended physical therapy diligently. Not easy but it makes a big difference in recovery.

My very best wishes for a speedy recovery.

[StanM]

Hi

My name is Stan I have PVR JAK2 positive I an on any coagulants (similar to a asprin) and 15mins (two 50th tablets) hydroxycarbamide also medication for Heart problems and COPD I had an operation on my stomach and after a check of my bloods I was told to stop sum of the medication and take different medication for a while. I had the operation and was out of the hospital within a day. The blood was checked just to ensure I was fit for the operation. So my advice is don't worry just enjoy having a little rest after the operation with others showing concerns for you.

After all its nice to see someone cares

Take care

All the best

Stan