Hip Replacement Surgery with MPN’s essentially MF etc ?

[pontygirl]

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 😘

[Cja1956]

You poor thing, I know what you are going through. I just went through 9 days of intense pain in my lower back and leg. I couldn’t walk at all. I had cat scans, X-rays, and even an ultrasound, but nothing was found. I went to see my hematologist because my platelets were the highest they’ve ever been and she ordered an MRI of my spine. Turns out I have an inverted, protruding herniated disc. The pain has mostly subsided and I started physical therapy yesterday. Those 40 stairs sound like torture to me. The bungalow sounds like a good idea. I’m really sorry I don’t have any advice for you on hip surgery. It’s terrible that they are making you wait 5 months to get an appointment. Things are very different in the US, but that’s probably why our insurance costs are through the roof. I wish you well.

Cindy

[azaelea]

So very sorry to hear all the MPN things you are fighting and now to discover a hip replacement is needed is the final straw! I’m sorry I can’t help regarding having the hip replacement while being an MPN patient. I did have my hip replaced but this was a good few years before ET was diagnosed. I can really sympathise with you as I know the pain you are suffering and difficulty walking and ......stairs......horrendous! I did have an operation (lumpectomy) for breast cancer which was diagnosed two months after the ET was . This operation went well. Not sure how this compares with hip operation but would say my hip replacement was great and recovery very quick. Such a long time to even see the Orthopaedic surgeon though and then waiting list when yours is obviously urgent! I hope you manage to get something done quicker and all the best for the preparation of your bungalow. We live in one and I’m very grateful.

I too miss Sand Dancer on here and was very shocked and saddened by her death. I know what a really good friend she was of yours.

Take care and best wishes for a quick resolution. Fran

[Heidi-W]

Hi MariaSorry to hear you are in so much pain and struggling at the mo and you hope you manage to get your NHS appointments through quicker.

I've not go MF but have PV on rux and had a hip replacement 3 years aged 41 although was on hydroxy then. Op went fine and main concern for anaethetist was platelet level. Was put on apixaban for 6weeks post op. Healed fine and I think the only thing I found was the fatigue meant I probably did take longer than a healthy person from an energy side of thing to get feeling more back to normal.

Really hope you manage to get seen soon and can sort some analgesia out etc and good luck

Best wishes

Heidi

[hunter5582]

Sorry to hear you have yet another challenge to overcome. Hip replacement is quite a work of carpentry. Doing any major surgery can be trickier with a MPN. I hope some who have faced this particular challenge will weigh in with their experiences.

I have had four surgeries in the last couple of years, one of them a major (brain) surgery. I definitely have noticed reactive thrombocytosis after each surgery, directly in relation to the level of bleeding and inflammation. It is a thing to watch for as well as making sure your MPN Specialist weighs in on your post-op care. Lot's of docs do not understand that we can be at risk for both thrombosis and hemorrhage post-operatively. My MPN Specialist recommended monitoring for both and being prepared for either possibility.

I do hope you navigate your care system with alacrity and get your care needs met in a timely fashion. I have been tilting that windmill myself of late. Persistence overcomes resistance! 😠

All the best.

[Gaithersburg]

Hi Maria, I am very interested in your question, and replies, about MPNs and hip replacement surgery as I've been told that I need one too but was anxious about it. Good luck with it all. Lisax

[gset]

Having had hip replacement with MPN my advice is to prepare for a longer recovery time than friends who have had a hip replacement and no MPN. Make a list and ask questions about how they handle blood management during operation. They told me they would recycle my blood back into me, then didn’t. Also look at who will help you afterwards, as you can have good and bad days as with any MPN. Best of luck xx

[Arty16]

Hi. Sorry to hear you are having such a hard time. I have et diagnosed 4 years ago but prob had it for a while. On asprin and anagralide so platelets under control. I also have osteoarthritis and needed a hip replacement. Finally had it sep 2020.I was in constant pain before op. Since op no pain. My hymotoligist spoke to my orthopaedic surgeon. I took my meds as normal apart from day of surgery.

I was in for a bit longer 5 days as they checked my blood every day. I ended up needing a transfusion.

I would advise u talk to your hymotoligist and surgeon. Try and keep exercising. And exercise your upper body as u will need more strength due to crutches etc...

Do the physio they advise for after op just now. But honestly it is worth it.

If you have any further question please ask

[Minu68]

Hi, so hard for you, have been there!I’m currently recovering from a hip replacement, had it on the 20 th of April.

I have ET, and my surgery was delayed until my platelets were below 500 initially, then further delayed by covid, in the uk most such surgeries were stopped as hospitals dealt with corona pandemic overwhelming the system.

I have been fine, in that the surgery went well and I was out of hospital after a couple of days.

I live in a flat with 2 sets of stairs. I have to do stairs one at a time, so it is slow, but I can do them ok. Was using crutches the first 2 weeks, then a stick, which I now feel able to walk without, just the last couple of days.

At first I was much more invalided than before the surgery, and my recovery is slower overall. I needed support very much the first few weeks, physically fatigued very quickly constantly,

The pain is different to before, lessening, but I still have to rest mornings and afternoons. I have been on riveroxoban since the surgery, for 5 weeks, then I go back to aspirin, to reduce the risk of blood clots. Have been strict about having my legs raised when I rest to further reduce the risk after a scare. My leg has swollen since the surgery, which is normal, but it should go down after resting with it raised for an hour or two.

Initially it was harder than before but it is getting better now, after 5 weeks. Definitely prepare to be much less able than before for a while, have support needs for washing, getting dressed etc.

But I can see hope on the horizon, being able to go for a walk, being out of pain.

Take care, x

[Inca]

Hello Maria,So sorry to hear of all your awful problems. We connected ages ago after the loss of lovely Lesley. We suffer a great deal with our M P Ns,can really do without extra pain.Cannot help re hip replacement,my chronic pain from hip to ankle is osteo arthritis tho maybe I do need a hip op,just putting off going back for more scans,have enough other worries,

Just wanted to say 'Pensees Chaleureuse' to you & hope you soon have some relief from pain. All my horsy friends have had hip or knee or both replaced without any concerns ,but of course no M P N. Ihave had several fractures in the last few years ,carefully managed re blood & I also have a stent...thanks again to P V,so Plavix was stopped for pre surgery.

Very Best to you and speedy resolve of all your stress.

Yes ,I would love to talk to Lesley too.

Sally.