Awaiting surgery with PV : Hi everyone I have... - MPN Voice

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Awaiting surgery with PV

Dianne-Guisborough
Dianne-Guisborough

Hi everyone

I have Polycythemia diagnosed for just over 3 years and now am well controlled on Ruxoilitinib 15mgs bd and warfarin ( due to DVT and PE prior to my MPN diagnosis).

I am awaiting an urgent right sided Hemi-colectomy with maybe chemotherapy follow up after my operation . The surgery is due to be done in the next couple of weeks . I am very positive because the bowel cancer was detected early via the bowel screening programme ( so please everyone always take part in all the various screening programmes you are offered - I had no symptoms so would have had no idea without the screening) .

My question is - has anyone had similar major surgery with PV or other MPN . The Colerectal Surgeon is liaising with my Haematologist re my PV but I just wondered if any one of our lovely forum members has any advice or tips if you have experienced a similar surgery .

Thank you and hope everyone is keeping well !

love Dianne

xxxx

29 Replies
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Keep talking to all the doctors and nurses about your PV, medications, and symptoms. This will ensure you get the best care and you'll probably be providing the medics with some much needed training on MPNs!

I hope it goes well.

Thank you so much

love Dianne

xxxx

Hi Dianne, meant to say I’ve had a lot of ops and every time the haem team and surgeon have always discussed my issues and appropriate advice has always been sought. This has meant I’ve had no trouble with dvts or other issues and recovered well. I’m sure both teams will do the same for you.

I’ve always had blood thinning jabs into tum and last time had to continue them at home for another 3 weeks post op but worth it to avoid any problems.

E hugs flying to you and will think about you when you go for your op.

Kindest regards Aime xx😻😻💐💐

Thank you so much Aime

Lots of love

Dianne xx

Hello Dianne - sorry cannot help with what you are facing (my operation was only minor, though I made sure that everyone know exactly what my mpn was)! - you sound as if you have a good team round you and just wanted to send all best wishes and good luck for the very best outcome. Stay positive and hit each day as it comes. Anne-Marie. xx

Thank you Anne-Marie

Love Dianne

xxx

Hi Dianne.

Best of luck.I’d take lots of copies of your current medication list, because you’ll be asked repeatedly which meds you are on.

Maybe an information sheet about MPNs and PV, too: it all helps. It isn’t safe to assume that info gets passed round the team. Even if it’s in your notes.

I had a bowel cancer screening kit sent recently too, and was surprisingly relieved when the answer came back, within a week, of no evidence of bowel cancer. So I’d echo your - do get it done- comment.

All the best.

Thanks Rachael

You are so right about ensuring everyone is aware of my PV .

I must admit that constantly having to explain to most health care professionals I come into contact with, what MPNs are and PV in particular, is a part of the MPN experience that I find quite draining and at times stressful - particularly if you're already not feeling so good. I do think that goes for all rare medical conditions though .

I'm lucky that I have my lovely family who are well read up and on the ball re my condition - just in case I'm not 'with it' for any length of time !!

Having a history of DVT and PE I just want to get my operation over with asap and then concentrate on getting back up and about playing with my gorgeous little grandchildren and taking Barney 🐾🐾 our cheeky little woof out on the beach asap !!🤣😂🏃‍♀️💃🏃‍♀️

Once again , Thank you for your support and advice Rachael

Love Di

xxxx

Hi Dianne,

So sorry you have another worry to contend with,P V is more than enough without other conditions. Like Aime I have had several surgical procedures over the years since P V,had a stent put in also,I have been absolutely fine,blood thinners are stopped a few days before,but not the Rux or any other ,Hydrea ,etc. The team who operate should be well aware of your P V or anything else,sure they will be,here in France they liaise with my P V consultant for everything,even a dentist or optician.

Sending you very best of luck and good wishes,e hugs and 'Bisous'.

Sally(know your area well,had a college friend who lived there,love North Yorkshire was born there) Northern grit will get you thru!had my P V 12 yrs now.

Hi Inca

Thabk you so much for your lovely message and I am so pleased you are keeling well after your stent - as a Cardiac nurse all my working life - you are talking "my language" 🤣❤😂❤

My op is scheduled for March 24th so not long now . Getting lots of fresh air walking Barney our lovely puppy, up in our beautiful forestry commission which we are lucky to have literally on our doorstep .

Once again, Thank you so much for yoir message Inca and keep well

As you say, Northern Grit will get me thru !! 💪❤😂❤💪

Lots of love

Di xxxx

Oh ,that s really interesting,you being 'au fait' with cardio!

I had my stent done years ago when diagnosed with P V. I remember the surgeon chatting away about the then U K Olympics as I watched the procedure on the screen! It was here in Fr but he spoke good English,we had a horse competing dressage ,he was horrified I wanted to ride ...I didn't of course.

North Yorks is lovely Dianne,We had many happy years there,we were between Stokesley & Helmsley,rode and walked the moors & forestry. Would really like to be back there.

Very best for your op,friend of mine has just had similar surgery ,is absolutely fine,is old lady like me !!Will think of you on 24th.

E hugs ,Bisous,Sally.

Hi Sally

We live in Guisborough which is just a few miles from Stokesely . Our little pup Barney's vet is at Stokesely - not far at all

Yes we are blessed where we live with the lovely hills, moors and forestry on our doorstep and having the beach just 10 miles away is lovely too. We obviously don't get the French sunshine and cuisine 🤣😂 but you can't have everything! 🤣

Keep well

lots of love Dianne

xxxx

Hi Dianne, I have not had surgery with my diagnosis of PV. I am also controlled and in a good spot at the moment. Stay positive as you have and your procedure will go just fine. Regards

Thank you so much for your kind wishes

Lots of love

Di

xxxx

Hi Dianne ,

My husband ( aged 61 now ) with a very similar history as your own, PV, 2 PE and several DVTs).He is Warfarin resistance so is now on Rivaroxaban and veno sections.

He had a ruptured bowel and had emergency surgery and ended up with a colostomy after a bowel abscess.Because of the abdominal infectiona few weeks later he had to then have his gallbladder removed .A year later he had a the colostomy reversed .

He is fine and had no problems with either bleeding or clots in all 3 surgeries .

Just make sure that your surgeon is talking to the haem team.

I hope all goes well for you .

Hi KeithGW

Thank you so much for your kind words and encouragement - it means a lot.

I am so pleased that all is well for your husband now .

My op is scheduled for March 24th so not long now ! I will keep everyone updated on my progress . In the meantime ,

Keep well and Kind regards

Love Di

xxx

I have had three surgeries in the last couple of years while also managing PV: craniotomy-resection of brain tumor, catheter ablation of the heart for atrial tachycardia, and a Green Laser PVP/TURP. For the brain and heart surgeries the surgeons did a good job consulting with hematology and a terrific job with the pre-surgical counseling and education - including discussing the implications of the PV. I learned the hard way with the GL-PVP/TURP that not all doctors bother with either accurate pre-surgical counseling nor do some bother with consulting with related treatment providers. What I thought would be a very minor procedure with minimal tissue damage and bleeding was anything but that. The degree of reactive thrombocytosis forced me to go back on chemotherapy, which was not anticipated. I did have some minor reactive thrombocytosis with the other two surgeries but this was anticipated and was easily managed. The neurology residents who followed my case after the brain surgery had little knowledge regarding the PV, but that was OK because the MPN Specialist was available if needed.

You have already said that the docs are consulting, which is really important both before and after the surgery. Given that you have had DVTs, I would think that your team would be watching for reactive thrombocytosis following the surgery. This is a normal response to bleeding and tissue damage, so it should be anticipated. The docs will likely have you discontinue all blood thinning meds/supplements prior to the surgery. Post-surgery, you may get a dose(s) of heparin to prevent thrombosis. The really big deal is to get the docs to talk to each other before and after the surgery. Also to get them to talk to you.

Based on what I experienced, this is what I advise for all surgeries:

1. Insist on a full and accurate explanation of what the surgery will involve, including all possible adverse effects - even those with low probability. Include an explanation of variations on what may be needed during the surgery. A qualified/ethical surgeon will gladly do this with you and answer all of your questions. He/she will also review your treatment options as there is often more than one way to approach the surgery.

2. Review your treatment goals and priorities with all of the involved providers, including the surgeon who will actually do the procedure. Do not assume that doctors share your goals and values regarding your treatment. This is best done in writing as well as verbally.

3. Insist on collaboration between your hematology team and the surgical team before and after the surgery. Stay aware of the recommendations being made regarding your care.

4. Get a copy of the Consent for Treatment prior to the surgery. Do not wait until you are in pre-op to read this as you will be under duress at that point. Do not sign the consent until you are comfortable will all of its terms. Modify/add to the consent if needed.

5. Have a personal support team available for you during and after the surgery. Having a care-buddy with you in the hospital is really important. Your quality of care will be much better if someone is there to monitor and advocate for you until you are up to speed and can do this for yourself. It is also really important for the emotional support.

6. Remember that assertive patients receive higher quality care. Passive patients do not. You and your personal support team need to be prepared to ensure you receive the quality of care that you deserve. Most providers and care facilities really will try to do their best, but the reality is that those willing to suffer in silence will often do just that. Be willing to work with your treatment team collaboratively, but assertively.

7. Give yourself time to recover and heal from the surgery. Follow the instructions and be patient. Keep a positive attitude and look forward to when you will be fully recovered.

8. Finally - If you have not already done this - have the documentation of your Advanced Directive, Assignment of Medical Power of Attorney , Financial POA and Will in place. There is peace of mind once all of this is done.

I hope that helps. I learned my lessons the hard way. I have learned that as patients we need to take responsibility for our own care. It is up to each of us to ensure that our providers know what our wishes are and insist that our preferences be honored. Most care providers welcome patients who are clear about their goals, preferences and expectations. Any professional who does not care about or is not willing to honor your wishes as the patient does not deserve your trust. I have found that all of the physicians/professionals I employ in my care actually like it when I am clear with them, ask questions, and seek to be active in my own care planning. I certainly believe that this approach improves my outcomes.

All the best to you. Please let us know how things go. You will be in thoughts and prayers.

Hi Hunter

Thank you so much for your kind, supportive and very well informed advice . I so appreciate you taking the time to share such a detailed and fantastic message. I will need to read and

re-read, better still print it out, in order to fully digest all of the information and advice you have so kindly sent . It is a really informative advice sheet for anyone undergoing surgery.

I am so sorry for all the complicated and serious health issues you have had and the complications you had linked to your surgery - I hope that you are now keeping well.

Once again Thank you so much for taking the time to provide such wonderful advice and information .

Kind regards

Di

xxxx

Hi,I am sure all will go well on 24 th .

After the long surgery,for about 48 hours post op , my husband had massage padding around his lower legs to keep the circulation moving ,with his history of DVTs .It was reassuring while he was stuck in bed and less active .

Maybe the same will be useful for you, if they available in the hospital?

Keep positive and good luck .

Yvonne

Thank you so much Yvonne

Kind regards

Dianne

xxxx

Thank you for your kind words. I have recovered from the previous 3 surgeries. Despite some challenges, I am doing well. The newest challenge is that I will need to have another surgery to remove a bone tumor from my mandible. I have seen a couple of different docs already and will see the maxillofacial surgeon today for initial consultation. The good news is that it looks like this surgery will not be that big of a deal as surgery goes. I will be sure to follow my own advice regarding surgery. One of the great things about posting on this forum is that it helps clarify your own thinking.

I hope your surgery goes well or if you have already had it that you are recovering well. Please do let us know how you are getting along.

Hi Hunter

I really hope that your maxillofacual surgery goes well . I am still on track for my Right-sided Hemicolectomy surgery next Tuesday on the 24th . I have been notified from our local hospital that visiting is restricted to one close relative for a maximum of 1 hr each day although this may change to no visitors by the time I go in . Although this will be hard ( I'm a very social animal!🐹🐶🐈🐱🦝 😂🤣😁) I totally get it and understand the rationale for everyone's safety and benefit. Tbh I just want to get in and although it is majorsurgery, get out asap !

As someone lucky enough to have a big group of very close family and friends, we would all normally be having a get together before something like this so it's quite alien to not be seeing each other before, during and after my operation ! 🥴

There are many people worse off than me but I will still be relieved to just get it all over and done with having PV, and asthma and being on warfarin and Ruxolitinib .

Ypu keep well Hunter and good luck with your surgery !🤞👍❤

love Di

xxxx

Thank you for the kind thoughts. Good luck to you as well. I do understand the limitations on visitors whilst in the hospital, but it is quite unfortunate. Patients who have a healthcare buddy while inpatient receive higher quality care. We are not the best advocates for ourselves when feeling poorly post-surgery. Most hospital staff do their best, but they are often understaffed and overworked. Please be sure to advocate for yourself as patients who are willing to suffer in silence will often do just that. I would note that in my last hospital stay for the brain surgery, the staff at Johns Hopkins were incredible. I was very well cared for and recovered quite rapidly as a result of the great care.

I did get some good news regarding the mass on my mandible. It does not appear to be as solidly attached as previously thought and should be relatively easy to get out. Unfortunately, the Maxillofacial surgeon identified two other masses adjacent to the teeth on the mandible. The plan is to remove the larger mass and biopsy the other two. My insurance company did not approve the repeat CT that was recommended, but oddly did approve a MRI even though it is more expensive. Decided to go with the flow on this one. I am waiting to meet with the new MPN Specialist at Johns Hopkins where the jaw surgery will be done. I definitely want a MPN specialist on the treatment team. I know that the surgery will trigger reactive thrombocytosis as all previous surgeries have done the same. We will be planning for that in my post-operative care.

I do hope you will be able to take a laptop or tablet to the hospital. In the absence of in-person visits, tele-video chats are the next best thing. You will be in my thoughts and prayers, with extra prayers on March 24. Do please let us know how it goes.

Good luck with your surgery!

Thank you so much for your good wishes xxx

Mazcd
MazcdAdministrator

Hi Dianne, just want to wish you good luck and a speedy recovery. Maz x x

Thank you so much Maz. My op is scheduled for March 24th - I will let you know how I get on. I have great confidence in both my surgeon and haematologist and am confident all will be well . What I'm finding most challenging at the moment, is curtailing my "social gadding about" so that I don't put myself at unnecessary risk of catching any unwanted bugs etc. that would then delay my surgery. Living in a rural area I am having plenty of fresh air walking Barney ( our lovely puppy ) up in our local forestry commission which we are lucky to have literally right on our doorstep . As a serial hugger I have to recondition my behaviour at the moment though !

#Feelstandoffishforme 😂 but needs must !! 😂🤣😘😘

Once again Maz Thank you for your kind wishes and all the hard work you do for us all

Love

Di

xxxxxx

I hope your surgery went well. Best wishes for a speedy recovery. Do let us know how you are getting along when you can.

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