Good Morning Folks, I hope you are all doing okay and for those of us in the UK the rain ☔️ and wind of late has stopped.. 😁
I’m South West and the Sun is shining at long last..
Well my MPN Family I seldom post at present, but I do keep up to date with you good folk & PM some good friends that I have made on this wonderful forum of ours.
I still miss Lesley Sand Dancer 💃🏻 hugely, and would love to discuss my present predicament with her, Bless Her ❤️🌹💃🏻 A much missed ray of Sunshine to many🌞
Just to recap I am ET JAK 2 +, MF, PV, AXSL1 mutation, at present I appear to be Intermediate 1 —2 on the DIPPS Scoring System with the MF diagnosed April 2018 after BMB, I had already found you good people in the March when I was first diagnosed with ET, from there I have found our forum to be quite unique with a font of knowledge between all of us, I have also made good friendships on Steve ‘s MPN Mates Australia including Magenta -Jaqi who is new amongst us , Welcome!
I take 20 mgs of Ruxolitinib daily
I have been unwell these past 5/6 months Platelets much too high at times etc, then PV entered the arena and so far I have only needed Venesection on two (2) occasions, darn it all, I felt I had enough with the ET & MF hey ho it’s how it goes.
After sharing about Lesley in January 2020 and the April of 2020 when I should have been in a hotel in Portugal for the month having fun & laughter with Lesley, I have been rather silent here...
Now I need to ask for any welcome feedback etc from whomever...
Ruxolitinib sorted out my Bone Pain 90% of the time and I have wonderful Clinicians including my local Haematologist and I attend Guy’s occasionally to see the good Professor Harrison, C-19 permitting of course...
Overnight some 20 weeks ago, I awoke one morning with dreadful pain in my Left Leg from Hip to my knee..
I was completely hobbling around my home, sought advice from my GP and saw a Physio at my Surgery.
I was referred to Physio at the Hospital, but like many other’s it hasn’t happened due to COVID-19 precautions...
I exercised and gradually the Pain eased in the leg, I specifically do core strengthening exercises on the leg & Hips etc...
I knew my walk had changed and I have a tendency to limp on occasion my body was trying to compensate for the weakness in the leg /hip...
I requested a Dexa Scan 9 month’s prior to this episode as overdue knowing I have Osteoporosis in L 1 -2 & 3 due to early Menopause & many years of lifting patients during my Nursing Career prior to the obligatory hoists used nowadays...
None of which I regret, I loved my profession and would do it all again hoists or no hoists...
Dexa Scan was delayed due to C-19 but after persistence with my Haematologist ( poor chap) I got the Scan done early January 2021...
Moderate change in Vertebrae & Hips reasonably okay 👍
Just gone through 4 weeks of dreadful pain in leg, didn’t know what to do with myself, I have continued the leg exercises for fear of losing the use of my leg..
Asked for X Ray & Orthopaedic Referral, X RAY done on the 15 May, results obtained yesterday, I need Hip Replacement Surgery...😬
I have been very worried that this was the actual cause of my pain, it all fitted like a jigsaw and I have nursed and seen far too many patients Prior & After Hip Replacement Surgery...
Machinery saying one thing
(Dexa Scan ) my body saying differently...
Now the question is, Hip Surgery with my MPN’s etc...???????
I have gained 16 lbs since starting Ruxolitinib last August and of course shielding, zero swimming everywhere Closed for Lockdowns...
I need to lose that weight ASAP, there will be enough Red markers against me for Hip Surgery primarily MF etc...
Platelets are presently sat just under the 5,000 marker...
Ladies, has anyone had Hip Replacement with my MPN diagnosis please ? .....
Currently I have a 22 week wait before I get to the Skeletal Clinic, from there you are referred to an Orthopaedic Consultant, arghhh 😬
Today I will be researching Consultants to see privately, for assessment I cannot wait over 5 months to get to the Skeletal Clinic then get referred to a Orthopaedic Surgeon!
I’m thinking, pay to see one ASAP & go from there..
On principle I will not have Surgery done Privately, I have put 44 years service into the NHS from training to retirement and cost implications..
Plus we are in temporary accommodation with our daughter as we Sold our house 31 March..
We have purchased a Bungalow just waiting for Conveyancing...
Then we have work planned for the Bungalow the usual stuff, Kitchen, Bathroom, new Heating system and decor yay !!!
Laughable part of this saga is, we Sold the house last November in order to live on one level for my hubby who is Ex Military a Paratrooper who broke his back in three (3) places on a night exercise and was lucky to survive the fall after his chute didn’t deploy correctly...
So we decided to have a Bungalow essentially for hubby not to have stairs to climb in our later years etc..
It is myself that needs the Bungalow at present or permanently who knows ??
Here at the daughters we are on one level once you get through the door.
Sarah has an apartment on the Second Floor and no lift/ elevator.
There are 40 steps to the second floor, on a good day I only stop 2/3 times..
Bad day it’s purgatory and I stop 4/6 times with the Leg, Sod’s law comes to mind....
So I thank you in advance for taking the time to read this long post, apologies friends...
Any feedback will be welcome especially from a post surgery Hip Replacement patient with MPN’s...
Wherever you are situated on our planet, stay safe have a good day and I hope you are all doing okay with our mate MPN...
All the Very Best to All 😊
Maria 😘