Spoke to soon : Back in hospital with... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Spoke to soon

amy1808 profile image

Back in hospital with internal bleeding from where I had the op . God it’s painful. Has anyone else had this problem x

38 Replies
KellyInTexas profile image
KellyInTexasAdministrator

Oh no….I’ve read a few posts on thrombosis Uk where it has.

Maybe join that group? One of the admins has APS.

Are you diagnosed with an internal haematoma? This is what happened to me after my recent surgery and I can guarantee it's very painful.

amy1808 profile image
amy1808 in reply to Ozchick

Yes , I’m waiting to go to surgery, the pain is awful 😣

How did they stop yours ?

Ozchick profile image
Ozchick in reply to amy1808

Don’t want to scare you but I ended up back in hospital and icu. I had lots of Morphine which was good until it wore off! If you click on my avatar and go back a few posts you will see my story. I’m about 90% back to my normal self but pain free now.

amy1808 profile image
amy1808 in reply to Ozchick

Sweet Jesus you had it rough 🤦‍♀️.

The pain is awful so they have just given me liquid morphine , can’t get comfy because if this bleed , ( in my breast) gone up to what feels like a triple H cup from a c cup

Ozchick profile image
Ozchick in reply to amy1808

At the time it was horrible and because it was a laparoscopic procedure I think they thought I was a whining old biddy! Hope they fix it soon and get a blood test if you’re on LMWH jabs (anti factor Xa to check) to make sure you’re at the right level and not causing the bleed to get worse due to overthinning your blood) Hope it goes well and remember- you know your own body and most of the staff know so little about APS so if you have someone in your corner to stick up for you it helps! Keep us posted and good luck.

amy1808 profile image
amy1808 in reply to Ozchick

Just on LMWH at the moment . Had last dose this morning and then supposedly to go back to normal meds . I think all 3 has been to much but they have followed the advice of my haematologist at Manchester .

KellyInTexas profile image
KellyInTexasAdministrator in reply to amy1808

Thinking of you tonight as I am going to sleep Amy… wishing you were better.

You will be soon.

Hang in there, friend…

amy1808 profile image
amy1808 in reply to Ozchick

O and urgent care have nicked my artery in my arm and it won’t stop bleeding now 🤦‍♀️🤯

Ozchick profile image
Ozchick in reply to amy1808

Wonderful-not!!

MaryF profile image
MaryFAdministrator

I hope that is sorted quickly for you, and it all calms down, let us know how you are later. MaryF

Thinking about you stay strong good luck

KellyInTexas profile image
KellyInTexasAdministrator

Checking in on your this morning… ( my morning) . Six hours earlier for me I think than where you are in Manchester.

Hoping you are resting… and being brought lovely cups of tea… ( yeah right…😩)…

amy1808 profile image
amy1808 in reply to KellyInTexas

Had a flaming awful night with the pain and a nicked artery that just wouldn’t stop bleeding . Had surgery this morning and they removed a lot of blood . Gone from a mango to a cantaloupe to a watermelon back to a large mango , sorry only way I could think to describe it . Got all sorts of tubes and drains coming out of me , not on any thinners at all but a nurse has told me they are in talks with my haematologist at Manchester

Wittycjt profile image
Wittycjt in reply to amy1808

Prayer said🙏🏻

KellyInTexas profile image
KellyInTexasAdministrator in reply to amy1808

Well, from now on we will be asking updates “from the fruit aisle…” as it is the best was to report on it I think…

Let’s hope for your sake you never go back to a watermelon… I can’t even imagine that pain.

You are on thin ice there.

Now with tubes, I hope you might have a small amount of LMWH to help your blood be a bit thinner throughout your body, especially your brain, where you need it.

Are you up and walking, to protect you from DVT’s?

amy1808 profile image
amy1808 in reply to KellyInTexas

I have these inflatable things on my legs That go up and down all day , just started me on heparin again tonight and go on two different one tomorrow. Swelling is creeping back up though 😵‍💫

Wittycjt profile image
Wittycjt in reply to amy1808

Surgical compression devices

KellyInTexas profile image
KellyInTexasAdministrator in reply to amy1808

What a nightmare…

Rest/ sleep every chance you can. You need to heal and be strong!

Adding a thought of you, know we care about how you are doing💜

amy1808 profile image
amy1808 in reply to Wittycjt

Much better today , surgeon been , the clot was a whooper 500ml plus fluid 😱. Drain in and leg massage things on my legs .liquid morphine is saving me the stress of pain , got colour in my cheeks xx

baba profile image
baba in reply to amy1808

Wishing you well..

Wow, you’ve been through the mill! Wishing you a speedy recovery xx

KellyInTexas profile image
KellyInTexasAdministrator

Checking on the melon…. How’s the fruit aisle today? Hopefully at home… and just the right size and ripeness… 🙃

Thought I’d give you an update . After removal of my massive clot 500ml 😱life has been pretty rubbish . I was kept off blood thinners if any kind for 2.5 days .god I was so worried. They eventually started me on Heparin again to bridge me , I moved about as much as possible. They let me home on Friday night as long as I promised to do nothing. I don’t have appetite or strength . My head feels woozy . My daughter said she can see a difference in my speech and movement .

District nurse came today , flipping drain leaking, she cleaned me up , there was a little clot that had got stuck and was making it leak . Felt very off today , woozy head , just not fully with it .

Can’t wait to get the drain out tomorrow and back on Warfarin. It’s been a truly awful week 😢

Stereolover profile image
Stereolover in reply to amy1808

So sorry to read of your suffering. Wishing you a full recovery.Take good care x

HollyHeski profile image
HollyHeskiAdministrator

Really wishing you a speedy recovery, look after yourself xx

KellyInTexas profile image
KellyInTexasAdministrator

You must feel horrible with no anticoagulant in your system. Awful feeling. Ugh… I hate it when we have this.

I will tell you Amy, it will take several days to get it up to level. ( like filling an empty swimming pool- will take a while.)

Can you bridge with LMWH until you are in range?

amy1808 profile image
amy1808 in reply to KellyInTexas

Hi Kelly , yes sorting it this morning with the warfarin clinic

I just hope I never have to go through this again 😭xx

KellyInTexas profile image
KellyInTexasAdministrator in reply to amy1808

I hope not either Amy. Rest up/ heal up- this will soon be behind you. xx

How are you Amy?

amy1808 profile image
amy1808 in reply to Wittycjt

Hi , it’s going slow this recovery 🤦‍♀️. Only had my drain out on Wednesday so it was in two days longer than it was supposed to be . Still on bridging injections , think he is nervous about me going back on the warfarin. I’m back in his clinic this morning so let’s see what today brings . I’m black and blue from two operations but got a support bra on now so that is helping , still in a lot of pain xx

lupus-support1 profile image
lupus-support1Administrator in reply to amy1808

I wish you a complete recovery.

Wittycjt profile image
Wittycjt in reply to amy1808

Please keep us posted- all the best with todays appointment

amy1808 profile image
amy1808 in reply to Wittycjt

Went well , he is confident the bleed has stopped and I can start warfarin tomorrow 🎉🎉and start to feel normal again

Wittycjt profile image
Wittycjt in reply to amy1808

How you doing now?

amy1808 profile image
amy1808 in reply to Wittycjt

Much better thanks . Transition back on to warfarin went well . Inr in range thank god . Healing from the op is slow but to be expected as it was pretty invasive as my surgeon keeps telling me . Hopefully the results will be ok 🤞🤞after all this x

I am happy to read this! Keep safe and enjoy !

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