Anyone had pea like lumps appeared on calf? I was frightened that I had another clot or DVT. Already had a stroke too. So I dialed 111 uk. And they sent me up to A&E. Then same old story, the docs or nurses didn’t know What anti phospholipid syndrome was. Sad thing is I had my rheumatology appointment two days before, I am seen every 6 months, 1 x consultant, then a nurse practitioner. This nurse I saw, she could not pronounce it, never had heard of it, she had a scrap of paper next to her with 5 questions to ask? Stupid ones. Took my blood pressure, that’s it....I asked her a question about eye sight, she actually went on Google, So I still don’t know what the pea lump is, and another one smaller behind it, on my artery? On my calf. It’s not hot, or hurting like when I had a DVT on the same left leg.
Sorry but I couldn’t understand how the A&E Doc spoke, they did all normal tests like bloods, pulse, ECG. Then said I could go after hours in there. Early hours 5.ooam. Just said to speak to GP and that report will be sent, as they didn’t under Stand apixaban and my condition?? The only appointment I can get is in 3 weeks. It’s a hard pea lump, getting bigger?
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mariamoo1
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Keep a very close eye and if you develop any pain at all, or any changes with lungs or chest or breathing in any way you must return.
My mother also experienced nausea and vomiting and fainting with her VTE’s ( from leg - always from legs) because they Entered part of the heart before lodging in lung.
As you know, we are not doctors, so we cannot give advice. Only your doctor can / should give you advice.
Please call for an appointment with your GP right away, and in the mean time return to ED/ A&E should you feel any change for the worse.
You really need go back as this is apalling treatment and you shouldn't have 2 suffer with this. I have no idea what is wrong but clearly worrying you and you need answers and some reassurance.... I don't know what suggest.. How did you get diagnosed is there any way you can get referred to this dr or go ur gp and explain situation and they can shed light or speed up some diagnosis 4 you., sorry not good with words and not much help. Hope you get answer and begin feeling better soon, x
That’s par for the course for a UK A&E in my experience.
I was admitted with INR if 12 because I had chest pains. Eventually put in a bed on a pain drip. At 3am I was woken And disconnected from the drip. Told it was now 9.8 under 10 so I could go (an hour away from home) then told to return at 9am.
The next week I was 13.9 sent straight home no concerns???
Yes ridiculous I went into shock when my INR dropped from 13.9 - 2.5 in 24 hours. I was shaking had a raging temperature, felt so ill. mum came down to see me and she put me to bed even undressing me as I was ‘out of it’
I was told I should have gone to A&E but my experiences there meant I’d rather die at home than spend eight hours on a wooden bench feeling as I’ll as I was!!! (Posted my experience in detail last year).
Our NHS is converted by the rest of the world - truth is they don’t have the resources or staff to adequately deal with the patients they have. Staff are amazing but the situation and conditions are dire.
I went through exactly the same as you. They took blood tests INR daily it was a yo yo situation. It took around 15 hours for the results to pass through the labs, then they sent an emergency ambulance out. It went to the wrong address. They said they were phoning, knocking on our door, blue lights the lot! We had a dog next to the door. No disturbance, or barking. Happened on three or more occasions. Then when I did end up I’ll, on the trolly or bench I’ll in A&E waiting, waiting. The vitamin k, made me really worse. But like you as soon as it dropped to 9, at 02.30am go home. I am no longer on warfarin. It was to dangerous my bloods were going crazy 1 to 14 in up to 48 hours, or the other way. I am now on Apixiban. Not perfect. But they tell me stable! I have been on it now for 2 years. I have had to prove stable, so I could have major surgery. Now I have had the op, thankfully successfully. I want to tell them that I feel Apixiban is not brilliant, example nose bleeds which last for around 3 hours for days, it pours and pours,
That I call my thin blood days! No clotting. Then other days I can hardly move , thick blood days? And now the lumps in calf.. A&E were terrible to be honest. My daughter had to spend 4 hours last night helping me with blood just pouring out of me, flooding the bathroom floor. She was stuffing my nose with sanitary products, she had to bath me like a child. She was only visiting to see us. I felt so ashamed, no daughter should have to do that, see that. My husband has had to do the same tonight. 4 hours of pouring blood. Stuffing and packing my nose with everything absorbent. I feel so weak. But I would feel worse in A&E.
Anti phospholipid syndrome “ never heard of it” that’s all you get from the doctors and nurses. I feel so run down. I have just ordered a big bouquet of flowers to be delivered to my daughter, she really did have a right bloody Valentine’s Day with me. And she works so hard, lives 3 hours away. It was a surprise visit in ruined
I am sure that your daughter was just pleased that she was able to be there for you and to do something practical to help. Often they watch us suffer and are helpless. Don’t feel guilty.
What you are going through sounds horrific and you are sure to be anaemic. This can be very serious so please talk to your GP and ask him/her to leave you a blood test form to check your iron and folic acid levels. You will probably need some pills. Please don’t go unchecked as the lower you go, the iller you will be.
I know first hand how difficult it is but I’d definitely ask for your haematology appointment to be brought forward.
Last Monday I had a blood test taken. Tuesday I was informed the sample had been left too long before testing. It was repeated Wednesday. When I rang for the results I was told it was 13 and I should go to A&E. I had a huge bruise on my arm with a ‘pea’ in the middle so I was concerned.
At A&E I was told to wait and it would be a long one! I decided to try a different tact. So said to the receptionist
“I’ve been sent coz my blood test showed my blood is 13 times thinner than yours and I’m at high risk of having a stroke or bleed at any moment. I just need some Vitamin K before it’s too late, to thicken my blood!”
She came straight out and spoke to a nurse and I was fast tracked. Better but still lots of sitting around. I had the vitamin K.
Again went into shock as my blood composition changed quickly. I began shaking and jerking my bp went up (167/93) and this time my temperature went down (35.5) half a degree away from hypothermia.
At 5pm I was told that at 1.20 the sample showed I was low so I was discharged.
I went for a check up today - a perfect 4.2. But I don’t feel as well as I usually do at this reading. Probably because I have been so high then low my body doesn’t know whether it’s coming or going!
I’m just being gentle with myself till I stabilise (for more than a day). Please be gentle with yourself too and let me know how you get on xxx
Hi, this sounds very stressful for you, please do telephone your GP and also can you get in touch with your main Hughes Syndrome/APS Consultant. In the meantime if you do have to go back, can you take somebody with you to help you, it can sometimes be difficult to fight your own corner when feeling unwell or not being listened to. Let us know what the GP has to say. I really hope you get more support today. MaryF
I appreciate your concern and agree with the others that you need your GP and your APS consultant to investigate and put your worries away.
Can you see it or are you feeling them? Can you in any way measure or picture them so you can record changes?
Make what ever appointments you can with your GP or/and consultant, (You may be able to write or have a telephone conversation)?
In the meantime, record any changes, and if they get worse, ie bigger, unable to walk, breathing difficulties, redness, hot etc please go back to A & E, (I know from experience, how frustrating this can be)!
You deserve the support and a diagnoses to relay your fears.
That not good being put out so far next appointment and agree this needs to be drought up lots sooner - I take my black shoulder bag with me when ever i go to Doc's {actually every day it goes with me when i leave the apartment } inside is material of APS What it is , my meds -All other Doc's and specialists i see with phone and Fax numbers .Plus medical alerts , necklaces and in my bill fold is a med card . The only thing is on my med list i don't list amounts of any one med as they change BUT the Doc's names and phone numbers they can get even my every three day INR's of my Warfarin- dosages. This has proven to be a huge help .and if i was brought in unconscious , the info speaks for me.when i had my big cot in the popliteal vein left leg , i had no swelling , wasn't hot , nor any discoloration . Called DVT for a reason i guess.Also groin left axillia and neck had none of the 3 things they look for either . Bet to you and lets hope they get this next appointment moved up and you should check into Warfarin Sulfate as your Anticoag for your clotting in my opinion . Best to you
I have random bruises appear usually my lower legs. They have a hard pea shaped lump in the centre. They feel a bit tender but although they stay for ages they don’t seem to cause any other problem. Eventually they disappear.
I have shown my haematologist and my Anti Coag nurse none of them seem concerned so I just keep an eye on them.
I would love to know what they are and why they arrive there.
Also... I’ve noticed that as the bruise fades the middle bit (where the pea is) fades completely- ages before the outside bit. So I end up with a doughnut shaped bruise. Very strange.
I’ll try and get a photo of it next time! I’ll see if I have one already. I do try to keep a visual record of them.
I posted one of my tummy after Clexane last month. You may have seen it (Haematologist said I can’t use it any more after such a severe reaction)
I have experienced this pea sized lump in my calf. For me it was uncomfortable, which is why I noticed it. I went to the GP, who said it was a superficial clot. He sent me for an ultrasound, which confirmed it.
I also want to mention that I am doing very well on apixiban for over 2 years. Triple positive with high titres. It's not for everyone, but it has been very good for me.
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