Given up asking, nobody gives a fig

[jointpain]

Fig is a substitute word.

After trying to get my darling wife who has MF and is without a spleen, along with a portal vein thrombosis a third covid vaccination and a flu jab, I have given up. The whole system is broken, she had her flu jab by this time last year. This year the GPs are hiding away not seeing anyone, denying patients any care. The consultant did see us on Tuesday, another waste of our time. He did up the hydroxycarbamide from 3.5 a week to five a week. Yet seven months ago stopped hydroxycarbamide altogether, hence the million count platelets and the life threatening massive bleeds.

Really think he's just experimenting on my wife with very little knowledge.

Rant over today

We did find out My wife has Howell Jolly bodies, but only because he didn't smudge the test results fully. Anyone know how the body removes Howell Jolly bodies???

[piggie50]

Hi,I sorry I can’t really help, I had never heard of Howell Jolly bodies so googled it. From my limited reading it appears the spleen usually removes these, but as your wife has had a splenectomy this is probably the reason she has them. I hope someone more informed than me may be able to help.

I just wanted to say I feel for you, you are and have been a great advocate for your wife. I am so sorry you have to be fighting for everything all the time.

If it helps to rant, rant on!

Much love to you both. 💐

Judy

[jointpain in reply to piggie50]

Until I googled Howell Jolly bodies, I thought they may be related to Dom Jolly, but alas no. Because of the Splenectomy and all the basically garbage running through my wife's veins, I'm wondering if dialysis might work😉 on the Jolly bodies, the giant platelets, polychromasia, target cells, bust red cells, and the marked neutrophil leucocytosis, plus one other that is so badly smudged I can't read it.

[piggie50 in reply to jointpain]

So glad you still have a sense of humour. 😂😂

[Otterfield]

I have booked my flu jab at Boots with no problem. It's still free. That may be an option for your wife.

[hunter5582]

I would be doing a lot more ranting and not using the word fig.

What you are describing is an appalling lack of competence and basic care for the patient. This should never be tolerated. Fire this doc and find one that is competent to provide MPN care.

Here is a list of MPN Specialists. please do whatever it takes to see one.

mpnforum.com/list-hem./

This could make all the difference in receiving the quality of care your wife needs and deserves.

[piggie50 in reply to hunter5582]

Unfortunately Hunter, it’s not that easy if one lives in Wales, although part of the UK it is impossible to get a referral to England and from my understanding there are no MPN specialists in Wales.

[JP1952 in reply to piggie50]

Hi, I live in Wales. Dr Knapper at The Heath is an MPN specialist. I managed to get an appointment and although I saw his colleague it was somebody with an MPN interest. He listened to me and came up with a range of options. Long story but I am now happy with my care.

[hunter5582 in reply to JP1952]

If the hematologist you saw should be on the list, please be sure to add him.mpnforum.com/list-hem./

[hunter5582 in reply to piggie50]

As JP1952 indicates, Dr. Knapper is on the list of MPN experts.mpnforum.com/list-hem./

Do whatever it takes to get to see a MPN Specialist. It can make all the difference in your care.

[hunter5582 in reply to hunter5582]

If the hematologist you saw should be on the list, please be sure to add him.mpnforum.com/list-hem./

[AndyT]

Sorry to hear you’re having so many problems - a couple of suggestions if I may and assuming you’re in the UK:

- Get your flu jabs done at a pharmacy. You should be able to get an appointment quite easily (my wife did) and it’s free for anyone over 50 and/or vulnerable. Even if you can’t get it free it shouldn’t cost more than £15pp.

- Keep on pushing for the 3rd flu jab - my consultant requested it on a Thursday and I got a call the next day from the vaccine hub to book it

- If your consultant isn’t up to it generally, look for another who is an MPN specialist. There are plenty out there and you’re entitled to switch and/or request a 2nd opinion. Unfortunately due to the rare nature of our conditions many haematologists have little knowledge or experience of treating them.

Don’t give up!

Andy

[lhasedoglover]

Hello. May I ask is she born without spleen. Me also have no spleen. I'm interested. Have a Nice day

[jointpain in reply to lhasedoglover]

She was born with a spleen, it ruptured in 2018 when about six times normal size, after a fall while running.

[Conneryfan]

So sorry that you and your wife are going through this. As others have said it might be worth a visit to a pharmacy for the flu jab. With regard to the 3rd vaccine, after coming against brick walls I printed out the MPN voice letter and turned up at a walk in vaccination centre with proof of my condition. I had my 3rd jab within 10 mins. I wish you both well on your frustrating journey.

[Wyebird in reply to Conneryfan]

Aaaggghhhh I’m about to go to London to get a 3rd jab through my heamo clinic. I did think about doing what you’ve done but that was it - I thought🙄

[Conneryfan in reply to Wyebird]

It is so frustrating to have no clear policy in black and white. The variables are just like the ET itself.....everyone has a diffetent experience!! Good luck

[lhasedoglover]

Thank you for answering. That was a heavy period I suppose. Hope everything is better now. I was born without spleen. Haven't met someone else like that.

[Cja1956]

It sounds like this has been a really rough year for you. I don’t really know how to advise you, but I agree with Piggie that your wife is lucky to have you. I hope things improve soon.

[jointpain]

How slow the wheels turn! After sending off another barrage of polite emails with the vaccination rates for the third vaccination issued by blood cancer UK. We got a phone call a half hour ago! Now booked in for third vaccination at 3.00 today and flu jab a week tomorrow. I does pay to go on and on and on and on😁 just hope it's the right one, as the lady that phoned seems to only know about boosters.

[jointpain in reply to jointpain]

After a bit of a wait, my wife had her 3rd primary vaccination at 3.28pm so all is well for the time being. She was also told that as things currently stand, she should expect to be called for a booster in six months. But also advised that things change daily.🥰🥳

[mhos61 in reply to jointpain]

Delighted at the good news, someone somewhere finally listened. Have a relaxing weekend.xx

[Wyebird in reply to jointpain]

Really glad for you both. Your wife is so lucky to have you x

[amhann]

So pleased that finally you have been listened to - all seems a constant battle that we could really do without! I wish you and your wife all the very best - stay safe. Anne-Marie x

[jointpain in reply to amhann]

Thank you Anne-Marie, and everyone else for their replies. We will try and get a second opinion on diagnosis and treatment, though I know it will be difficult.