Checking in: Hello, I've been away from here for a... - MPN Voice

MPN Voice

10,445 members14,398 posts

Checking in

Chelle_ profile image
23 Replies

Hello, I've been away from here for a bit.....nothing been wrong just life has got a bit hectic and crazy. So blood; I've been reduced on the HU to 1 x 5 days a week. Ive changed hospitals from London to Bournemouth, I am still very anemic but my bloods are doing ok, so the thinking is that we reduce the mess a bit to stop the anemia and hopefully not change the blood counts so much....I'm back in on Wednesday to see what's going on.....I've had another MRI scan for the liver, I feel like a ticking time bomb at times.....what's going to go first....the liver needing to come out or will I progress to MF? Worrying about nothing I know but it's always at the back of my mind.

Am back in for more banding too, I have bleeding on my tummy so they have to snap close the blood vessels...... To not a nice procedure, my least favourite next to a BMB.....

On positives I have started my own Personal Trainers business and Sports Massage business.....things seem to be taking off well.....I don't have time to sleep in the day....oh I wish I did.

Anyway, that's all from me really.....I hope your all doing well.

Written by
Chelle_ profile image
Chelle_
To view profiles and participate in discussions please or .
Read more about...
23 Replies
JediReject profile image
JediReject

Wondered where you disappeared off to Chelle, good you're back on. . You sound like you're way too busy to be poorly I don't know where you find the energy from. Hope your banding goes ok it doesn't sound very nice I have to say. I'm glad you're cracking on and your businesses are taking off. You deserve your success. Regards Chris x

Chelle_ profile image
Chelle_ in reply to JediReject

Hi Chris, I don't have any energy.....lol boy I wish I did. I hope your doing well.......x

Polly-PV profile image
Polly-PV

Hi Chelle...not far from Bmth hospital so it's good to know you're being looked after well there. Poole hospital's my home from home tho my levels are ok at mo. Well, look after you Chelle, sending you a big hug, Poll X 

Polly-PV profile image
Polly-PV

No, that wasn't some sort of code at the end of my last message - still trying to get used to the new app!! X

Chelle_ profile image
Chelle_ in reply to Polly-PV

Lol....I've not tried the new app yet... Any good? I lived in Poole for three years when I was in the navy, was based in ha worthy. Will let you know when I'm next up we could meet for coffee.... X

Polly-PV profile image
Polly-PV in reply to Chelle_

That would be great Chelle.....just let me know when you're around next. Much love Poll x

Hi Chelle, you must be psychic, I was just wondering today how you are. Was going to pm you to see. Glad your business is taking off. I did look at your website previously and it was looking good, with that and your energy and positivity not surprised you are finding success in your new career. Your life certainly sounds very busy, like JR says I don't know where you find the energy.

Sorry to here about the bleeding, wish you good luck with the banding. I don't know what it involves, but it doesn't sound nice, so I hope its over with for you soon.

Let me know how you get on Wednesday and results of your MRI. its always a worrying time waiting for results, we all do it, bit like the medical equivalent of an occupational hazard!

Anyway lovely to have you back. Make sure you take care of you too and don't work too hard! Liz xx

Chelle_ profile image
Chelle_ in reply to

Hey Liz, the results I don't get back until April..... Unless they find something so so far no news is good news. Banding isn't nice but they sedate me so fingers crossed it'll be fine. Are you at the fund raising event in November? Xx

in reply to Chelle_

Hi Chelle, no afraid I cant do the event in Nov. Wish I could then we could meet. Are you just in London for that day? If you around for longer could meet another day for coffee or something. if not no worries I am sure I will get to meet you sometime, maybe at another event.

Fingers crossed all is all right when you get your results let me know. Let me know that the banding has gone ok too, you will be pleased when it is over I am sure.

In meantime take good care of you and speak soon Liz xx

MarkD6701 profile image
MarkD6701

Hi Chelle, how did you get liver cirrhosis? The reason I ask is that in December last year I got two blood clots, one in my mesenteric vein (part of my intestine being removed as a result) and the other in the portal vein. The docs thought I had cirrhosis due to the portal vein being blocked and my liver having a coarse texture , but since then the scans have shown my liver to be OK. All very strange.

Chelle_ profile image
Chelle_ in reply to MarkD6701

Hi mark, I got a clot in my portal vein.....apparently it was just a matter of time. My liver is holding up well, I don't drink haven't now in two years, I exercise regular and eat as clean as possible. Life is just different now. I'm pleased to see you don't have it, I'm like a ticking time bomb! Lol.

Paul42 profile image
Paul42

Hey,

Totally with you on the varices and liver, it worries me more than the PV itself at the moment because of my elevated counts and constant endoscopies.

They thought my liver was damaged but had a transjugular biopsy and all proved to be ok thankfully.

Not sure what banding is? I have had mine injected with a glue, is it similair to this or something different?

Paul

Chelle_ profile image
Chelle_ in reply to Paul42

Hi Paul.....I don't know about the glue thing,...maybe I should ask..... They go down my throat and snap a tiny elastic band over and bleeding varicies. It's quite repulsive..... Not something I'll ever elect to do.

Paul42 profile image
Paul42 in reply to Chelle_

Hi

The glue is supposed to harden the surface to stop them bleeding, they use the endoscopy camera to do the injecting.

Paul

harleydavidson profile image
harleydavidson

Hi Chelle. Well done you with your new ventures. I hope you are feeling better soon.

Love Mel x

Chelle_ profile image
Chelle_ in reply to harleydavidson

Hi Mel.mthank you. Hope ur good x

linds profile image
linds

Morning Chelle,

Wondered where you had got to and now we know jolly good luck with your business adventure. As you have moved hospitals I won't expect to bump into you at Guy's any more. Really hope all goes in the best possible way with your other health concerns, you are one gutsy lady! All the very best.

Linds

Chelle_ profile image
Chelle_ in reply to linds

Linds, I am up in London for the fund raiser if your around xx

linds profile image
linds in reply to Chelle_

Chelle, so sorry but tied up this week, what a shame. Are you coming to the MPN event in November because this time I will be there? xx

linds profile image
linds in reply to linds

Chelle, so sorry, you must think I am quite mad! I totally misunderstood you and being in London - now I realise you meant the same event I am talking about. See you there xx

Twinkly profile image
Twinkly

Good to keep in touch ..I'm really glad the training is going well ! With your good looks and personality you can make a success of whatever you decide to do with life !! Just remember only push yourself to your own energy limit ! We still think we can fly to the moon ...even at my age ..but maybe we might only get to be a star ..remember that ..keep twinkling. Xxxx

MarkD6701 profile image
MarkD6701

The thing that I find annoying, and I'm sure others do is that when you get any sort of liver damage the doctors think you have been a heavy drinker even though it wasn't in my case. They simply refuse to believe it could b e caused by any thing else.

Makes you wonder if medical training has progressed in recent years when it comes to the causes of liver damage.

Aime profile image
Aime

Hi Chelle, sorry to hear you have had problems and not been feeling great. I know from experience you don't get much rest running your own business but watch you don't overdo it and burn out! Been there and done that too, it took me years to recover, well as much as you can with PV.

Take care, hope the medics get you sorted out. Best wishes. Aime xx😺

You may also like...

Check up time again..

worsening back pain he doesnt think its the MPN or meds ! seems any symtoms i have is nothing to do...

Besremi check with RN

as: \\"let's hope all is okay with your liver and kidneys over time,\\" and \\"let's hope you also...

Importance of regular dental checks

Check up

area. I also met a lovely lady from Surrey who was there having her blood for MF and she really...

2 weeks on HU - first spot check 👀

had my first bloods taken since starting hydrea two weeks ago. All bloods in normal range and...