Sunday morning update ..I'm going private to get my knee surgery .just can't wait on the NHS.. The list may take forever .will I be o,k, ???

Sunday morning update ..I'm going private to get my knee surgery .just can't wait on the NHS.. The list may take forever .will I be o,k, ???

I'm terrified of surgery knowing I have MPD , Iv been on the trial drug ruxulitnib for over 3 years .Its been so good in my case ,so I went for tummy repair and hiatus hernia surgery in March this year ..that proved such a success ,Now I'm going to Cambridge for a new knee to be fitted .. I will slowly become the bionic woman !!! Twinkly xx💜

12 Replies

  • Aw Twinkly I hope so .

    You were amazing when you had that last surgery and of course it is scary but I hope you hear soon and come through with your usual positive attitude xx

  • Hi Twinky, I'm sure you will be fine, in the private hospitals it's like being in a hotel. Also, they have specialist doctors and equipment, you won't be any worse off. With a new knee you will be able to be more active and therefore more healthy. Good luck!

  • Snap Twinkly but I am just getting half a knee tomorrow. Hope it all goes well. Aime xx 😺😺

  • Hi Twinkly, so you are going to get the new knee done at long last. Do you remember that I had mine done a year and a half ago although it was painful after op, as I could not take the strong pain killers, and had to rely on good old paracetamol and paid for private physio therapy as it was few and far between on the NHS and a complete waste of time. My physio was amazing so much so that now I can even kneel on the floor run around after my grandchild, I even invested in one of these static bikes the floor type, you can sit in an easy chair and peddle away to your hearts content that has really helped with my exercise, and or course plenty of walking.

    Make sure the doctors know about your condition, I was advised to stop my Hydroxy and Asprin a week before op, and then restarted a week later, my levels hardly altered which was good considering it was a major op, but I expect you know that after your tummy op.

    Anyway Twinkly you will be soon running around with your lovely dogs they will also keep you fit, and walking and swimming are the best form of exercise you can do, so glad to hear you are getting it done it will be worth it, just make sure they know your health history and if need be they consult with your hamematologist before the operation.

    Kind regards

    Keep Twinkling ✨🌟💫

    Jean X

  • Helllooo Twinkly, like others have said you coped very well with your previous surgery so go get that new knee it will obviously make such a difference with your busy schedule, ok you may need slow down initially after surgery. . And I happen to think you are a bionic woman already with what you achieve given your MPN status.

    I very much doubt there is anybody on our Forum who is fitter on the inside than you given your dietary regime but I can understand your concern as no one relishes surgery.😷 But you will be fighting fit in no time such is the way you deal with everything. Best of luck and love from your 'wayward son' . . X 🌻

  • You'll be great Twinkly and it will give you a great improvement in life. We'll all be thinking of you you've gone through so much so far and come through with flying colours!!!! Best of luck and best wishes.

  • Xxx

  • Hi Twinkly, hope all goes well. I need 2 new knees but I am terrified of surgery, even more so with the ET! So I am due to have some pain killing (steroid and anesthetic) injections in December, if they work I will be getting proper nerve block injections. I've been waiting since March for the appointment! I've had steroid injections before but they only last a couple of weeks. If the injections don't work I will have to go for the replacement surgery as I really can't put up with this pain much longer. So I will be watching with great interest how you go on!!

    Best wishes

    Lizzie XX

  • Hi Lizzie ,,it's been an ongoing saga this knee problem ,,been delaying it for years ,because I was on the magic trial ,,with ruxulitnib every day ,the g,p, wouldn't give me pain relief ,,I have had those injections of steroid ,,like you say ,little relief for a few weeks ,then the bakers cyst returns ,each time with agrees iv pain , I wear a sports knee support under my jeans at my dog shows ,but it's getting too much for me now ..I'm going to bite the bullet and get a bright shiney stainless steel replacement . So very pleased to hear from Jedi .warrior .again ..miss our long chats these past weeks ,I'm so proud of his determination to be well you know I'm made of broccoli and fresh fruit ..washed inside by filtered water and juice ,from a nutri bullet .im very ,very,well considering ,even more important ,I'm very positive in my life ...if I could bottle it ......I would as ever ,,twinkly ...xx💜

  • Hi Twinkly, Good luck with your knee op , your be in good hands, before op and after op post opperative care is the best when going private ! knee pain is horrid , both mine are wearing out due to Athuritis ,so i shall be going down same route one day soon . All the best ,regards Holly x

  • Hi Twinkly , yes your get good before and after care by going private , they have the time for to compared to NHS staff sadly . just stay positive like you have been , It will make a big difference to you having knee done , being that you get out and about alot with dogs etc ,good luck best wishes Holly x

  • Hospital today ( Tuesday ) , excellent bloods again ,spoke to doctor about the knee surgery ,he said I'm good to go ahead now ,,taking my ruxulitnib again all through the stay in the surgical ward , date now penciled in for November 25 th ,,So fingers crossed I will be done and dusted by Christmas .i will keep you all up to date with my progress ,,, Be well buddies. Twinkly x

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