My nose bleeding blood transfusion and apixaban

[mariamoo1]

Just an update about my continuous nose bleeding. (7months) for the past few weeks they went crazy, with blood streaming out, half filling a bucket. I had my blooded hands pinching my nose, used ice wadding sanitary towels (1of witch my husband accidentally stuck to my eyeball and lashes with white medical tape) & Tampax. It was impossible to get a GP appointment, then I finally got one for two weeks later. Anyhow, it got so bad that one night I flooded the bathroom with blood, it looked like the classic film “Carrie” and I got so upset that my husband mopped me and the floor. So I gave in and phoned 111. An ambulance was sent, I was taken to A&E. Bloods tests taken, also matching for a transfusion taken, hemoglobin was 68. Nose was corterized . Given liquid iron, an appointment for ENT and further blood tests in 2days time. Once home, within the hour bleeding yet again. Then ENT appointment moved to five days later. Went for blood test as planned, I was exhausted, heart pounding, could hardly breathe at the time. Bloods came back as 60. I saw my GP a few hours later. He told me straight that I needed a blood transfusion. He kept phoning the hospital lots, but never any beds available. Best he could do was get me a booked bed for 3 days later. Within half hour of leaving GP, bleeding heavy , GP phoned me and hospital. No beds. My nose was flooding heavy, it took 10 & half hours of trying everything trying to get it to stop, whilst awaiting another ambulance. They thought I was having a heart attack, I looked that bad. Anyhow, got to A&E, more blood tests, during the 7 hour wait to be admitted. Blood results shown it was down to 50. ( I weigh just under 8 st, I’m 5’55} l really and truly thought I was going to die, I honestly felt so bad, heart pounding, racing pulse, very low blood pressure, eye sight deteriorated, shivering sweats, shallow breathing. Put on saline drip. Yet again not one Doctor or nurse had ever heard of APS. Told my blood transfusions were ready, finally got a bed on a ward. They would not do the transfusion in a chair, I offered, but no, as I was too weak to sit. Next ENT Consultant arrived, my nose had been corterised in the wrong place it seemed, this time thankfully they made my nose numb, (but still it was eye watering experience, ouch like cricket ball in face/dentist hitting your nose nerve whilst injecting ) I’ve just had 4 units of blood over the past 12 hours, doctor has done my first post transfusion bloods, 107. The labs were so surprised then sent him back an hour later to re-test as they had never seen such a fast change in results. I’m feeling much better, still weak, and headache, cricket ball face.and even better no nose bleeding, for the past 24 hours. But not one medical staff knows what APS Is at all, I tried saying huges syndrome, sticky blood, told them I’d already had a stroke, DVT’s. Told them I’d need a bridging plan to stop Apixaban. They even made me take aspirin before the blood transfusion. Has any one else gone through something like this? I also have had to take my own prescription meds, as even now we’ll after 24 hours they haven’t received any from hospital pharmacy. Good job I carry spare in my handbag along with my prescription copy. Hopefully I can leave this hospital bed tomorrow. So I have had to just carry on throughout the blood transfusions taking apixaban, I don’t know if I was correct in doing that? But none of the medical staff knew either! But all I know, is that you cannot just stop, as when I had my arm operation, a bridging plan was used. Sorry if rambling, spelling Bad. I’m exhausted in my hospital bed, it a rather noisy ward.

[HollyHeski Administrator]

Hi, you really need to speak to your specialist or the doctor who prescribed your apixaban?

Maybe you will see a haematologist today at the hospital, if they don't know much about APS, maybe they can contact your specialist?

I know you cant take warfarin but maybe a trial/bridging with heparin would suit better.

Hopefully your on the road of recovery now - get well soon x

[Fra22-57]

Wow I wouldn't like to go to that hospital. They sound so ignorant.mind you seems like lot of gps and hospitals dont know about APS.You have been through hell.I have a granddaughter who'd nose used to bleed so heavily and she would pass out and knock herself unconscious. She had loads of corterisations which made her septum collapse so this has brough back memories.

HollyHeski suggestion of heparin was good.

Hope you are soon home and this does not happen again for you

[MaryF Administrator]

Hi, as advised by HollyHeski you need to get in urgent contact with your main specialist, which area are you living in, so I can copy and paste some doctors in your nearest area. This needs to be supervised. MaryF

[mariamoo1 in reply to MaryF]

I live in Norwich, I attend the NNUH

[MaryF Administrator in reply to mariamoo1]

1. Dr Chetan Mukhtar Consultant Rheumatologist Department of Rheumatology Norfolk and Norwich Hospital Colney Lane, Norwich Norfolk NR4 7UY Telephone: [phone]

2. Dr Isobel Chalmers Consultant Haematologist Department of Haematology The Ipswich Hospital Heath Road, Ipswich Suffolk IP4 5PD Telephone: [phone] MaryF

[KellyInTexas Administrator]

rheumnow.com/content/2019-e...

Can you show this to your physician?

Also, your physician can call the Hematology Dept if guys and St Thomas. Ask to be round straight through for specialized management on APS. There is very specific protocols for surgery bridging and APS .

[Wittycjt in reply to KellyInTexas]

This is great!

[Ozchick]

Where in the world do you live that medical help is so abysmal? Even the newly minted registrars at my hospital when I was last there wth suspected DVT, asked why I thought I had this and when I said I had APS he just went 'Oh, that will do it'.

BTW your pic almost need a warning for any blood phobics on here!! {the Doc Martins of the world)

I do hope you get proper help soon.

[KellyInTexas Administrator in reply to Ozchick]

“Be quiet. Quit talking.”

🤣💯

[GinaD]

My goodness! Do lean on the hospital to find and talk with docs who know what APS is! Sending happy thoughts.