Spleen infarcation

[Loubprv]

Hi everyone I had 4 bouts of really agonizing pain on upper left side and round my back ( I m a hardy old bat so don't moan out loud easily) this morning, along with profuse sweating and nausea verging on vomiting. Each episode lasted 20 mins then subsides and reoccurred every hour and a half.

Now at 6 pm seems to have subsided.

I have had pv for 16 plus years, and my excellent haematologist ( by email) thinks it might possibly be spleen infarcation.

Has anyone had experience of this?

We re due to fly to Nice on Monday and I m a bit worried. Any advice please ?

I ll probably trot off to hematology daycare tomorrow to see blood nurses, but the last time I did that ( 4 hour round trip) it was rather a waste of time .......

What to do?

Thanks for all feedback

Louise

[DJK12]

I had a splenic infarction about 18 months ago. The same agonising pain as you on the left side just at bottom of the ribs and round the back which lasted about 10 minutes. I was doubled up and sick. The other clue was I also had a very bad pain in my left shoulder which was the vagus nerve and also apparently usually accompanies an infarction. The only difference from you perhaps was that I'd been feeling unwell for a few hours before - nothing obvious but had lost my appetite and my temperature had gone up above the 38' threshold when because I'm on rux I'm supposed to phone the hospital for advice. I was dithering about what to do when the pain occurred. I was told to go into the oconolgy receiving unit and was immediately rehydrated, given morphine and antibiotics. A CT scan later confirmed the infarction. My speen is quite enlarged anyway which I knew. I was in for a couple of days on intravenous antibiotics until my temperature came down and then home with oral antibiotics and strong pain relief.

At my next haematology

appointment my rux was increased to see if the spleen could be decreased. ( this was disappointing as it has aggravated my existing anaemia problem).It had come down initially when I went on rux but had been creeping up. I think I would have been put on blood thinners if I hadn't already been on apixaban. My impression was I wouldn't have been admitted if I hadn't had an infection on top of the pain.

In view of you going abroad I think its essential you follow this up tomorrow both for your own piece of mind and safety but also from your travel insurance point of view. You should check what their advice is about travelling.

It was certainly a horrid experience and I hope your pain doesn't reoccur.

[Loubprv Volunteer in reply to DJK12]

Hi Thanks so much for your response I didn't have any shoulder pain, but have made an appt for this morning at the day unit. Louise

[Loubprv Volunteer in reply to DJK12]

Me again Just wondered if the pain reoccurred on another day? Thanks so much

[DJK12 in reply to Loubprv]

No I just had one bad episode on that occasion. Possibly the blood thinners had helped? The spleen remained very sore as did the shoulder for about 10 days afterwards - I felt very knocked about. However this January the spleen and shoulder suddenly became very sore again but without the appalling pain. Yet again I ran a temperature. The usual happened - 2 days in hospital with intravenous antibiotics and strong pain relief. All very kind and efficient However they didn't want to do a scan which was disappointing. Unfortunately I had a very serious reaction to Peg 10 years ago resulting in pneumonia etc and 5 weeks on and off in hospital. My immune system has never recovered and the slightest cold tends to make me ill and now the spleen seems to have joined in.I appreciate you may not get a scan today. It took nearly 24 hours when I was actually in hospital. I wasn't allowed to eat, though didn't actually want to anyway, until it was done. However push to see a haematologist. Good luck.

[Loubprv Volunteer in reply to DJK12]

Hi thanks for your response again Strangely I too had a terrible reaction to peg interferon last year which put me in hospital for 4 days because no one knew what was wrong with me ( severe bone and muscle pain, nausea vomiting fever)

Turns out it was interferon which was slowly attacking my autoimmune system

Turned me from being slightly gluten sensitive to a full blown coeliac

Inconvenient but I can live with it.

I m with you! I go into purdah in the winter to try and avoid colds but still managed to pick one up which is still lingering after well over two months ....

I ve asked my GP 3 times for the RSV vaccine, but finally got a letter from the practice manager telling me to go away, stop bothering them, they have better things to do.

I m livid.

Hey ho!

I can feel a letter to the national press coming on.

Louise

[DJK12 in reply to Loubprv]

Yes I would have thought it cost effective to give it to those who have immune problems. I read that early statistics have shown it has already kept hospital admissions for RSV down this winter - just as well in view of all the other problems. Where I live in Scotland the GPs don't do any vaccinations - it's centralised so no point in asking them.

[Loubprv Volunteer in reply to DJK12]

Heavens It just seems common sense to me !!

[hunter5582]

Sorry to hear about this issue. It is most certainly not time to just be a "hardy old bat" and suck it up. This kind of pain is a warning that something is wrong. Going out of area without resolving this would not be prudent. Definitely get yourself seen immediately. Your body is telling you to take care of it.

Please do let us know how you get on. We will all want to know you are OK.

[Nerjalover in reply to hunter5582]

good luck at the haemos today!

[Loubprv Volunteer in reply to hunter5582]

Thanks Hunter I ve made an appt for this morning but probably won't be able to have a scan ........all very frustrating. Louise

[lizzziep]

Definitely get in touch with Haematology again, hopefully you can get sorted out and be able to enjoy your holiday.

[Loubprv Volunteer]

Thanks so much

[clematis26]

Sorry to hear this - must be distressing. All good advice from everyone.... and that you will visit the hospital... please make sure your travel insurance has ticked all the boxes .... and have a lovely holiday!

[Loubprv Volunteer]

Thanks so much

[Scaredy_cat]

i had something similar about 30 years ago. The infarction was caused by a portal vein thrombosis which in turn turned into investigations for mpns. From what I remember the pain lasted about a fortnight. I was on painkillers and had an ultrasound scan. They also did other things like a ct scan and a liver biopsy because my liver was enlarged as well

[Loubprv Volunteer]

Heavens poor you.I feel my much better today so keeping my fingers crossed it was a one off!