Following urgent X-ray on Monday, I received a call today to attend A&E urgently due to a shadow on my lung. I was petrified that I was physically sick.
I was straight through and seen by a doc within an hour and a CT scan carried out.
The results is that I have fluid in my lungs and fatty deposits near my windpipe and heart. They also commented that my kidneys are no worse?? They say it is because of my condition and APS. My INR is again extremely low. I have shortness of breath, hoarse voice and tightness in my throat.
I have just got home and really scared, frustrated and confused.
Should I be worried? I am at hospital four times a week already.
Sorry to go on but I am not sure how much more I can take, sat in tears
Linds
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LSurtees
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They have increased my warfarin for over weekend. I am on that much medication I don't know what's causing all this. My symptoms are just not getting better but feel worst and I'm so frustrated and low.
My symptoms have been on and off for past 8 weeks but have become worse since my Rituximab infusion three weeks ago. I thought I was having a reaction.
They confirmed that the shortness of breath and hoarse voice is due to fluid on lungs and that I will need some sort of treatment for it but Rheumatologist will need to decide course of action.
Ok thats good advice- if you are on your own, and your breathing gets any more uncomfortable, please just ring 999 to get an ambo. Do not attempt on your own to get to hospital any other way.
Do what they say about increasing your warfrin.
Most of all, (easier said than done!) Try to stay calm, talk to us over the weekend, look after yourself and rest.
No prob - Im ex ambulance and have APS, I totally understand your worries. On one hand just because we have aps they dismiss us on the other they think we know it all!
Try to stay calm, listen to your body and if your concerned just ring for ambo, you come first.
HI, this sounds tricky for you, when are you supposed to see somebody for more help? As knowing what is going on will reduce your anxiety, did they give you some sort of idea? Of course if you get worse you must go back to hospital. Keep an eye on that INR>
Do get your thyroid adequately tested as that can cause things like that, if under active, and unfortunately the testing on the NHS is very limited.
Mine failed the awful TSH test for over ten years, so I went and did them privately, did loads of tests and it showed up, Here the list of symptoms from Thyroid UK, a charity who we really trust on here: thyroid UK; thyroiduk.org.uk/tuk/about_...
The INR must be high enough if you still use Warfarin. Very important that you are well anticoagulated now if you have pain in your chest. As holy said, ask for Heparin-shots (if you selftest), to take if your INR is under your therapeutic level.
Please go to A & E if you are breathless as they told you before!
I do not like that your INR is very low! It should not be low now.
You should absolutely have low dose Heparin to take if the INR is too low!!
Perhaps they do not understand how important it is for us to be properly anticoaglated with lung/heart-issues! You must closely follow your INR now and do bloodtests very often, as you also as I understand it, take antibiotics which could make the INR go high up or down.
I'm into my third week on warfarin and still going for regular blood INR tests every other day but the rheumy does keep changing my meds which I don't think is helping at all.
I am back again on Mon and that's when I start Methotrexate, tho not sure whether to take this is morn or eve with all side effects.
Rhemy is doing a breathing exercise with the shortness of breath I'm experiencing as it's lasted more than four weeks and wonder if I could have early heart disease
No my breathing and tightness is still the same but no worse. They thought I could have infection but had two lots of antibiotics and still no improvement.
I will ask on Mon about the heparin and see what they say.
I would like to know if someone of those Doctors taking care of you knows HS/APS? I wonder if your Rheumatologist is a Specialist and perhaps you INR is in range even if you do not know about it.
Please ask him if the INR is high enough, otherwise he should give you a Heparin-shot to take if the INR is UNDER its therapeutic level! It could be very difficult to handle the INR when taking antibiotics and now also Methotrexate.
They are trying to help you I am sure. I am sure you are in good hands as you go to the hospital so often. Ask about the Heparin if the INR is not in range! Wish you get soon better now!
I don't think I'd be comfortable waiting til Monday, can they give you some lovenox until your INR goes up? We worry about a clot happening to you. Have you asked them about this? I don't remember, where are you located?
I can tell you that I had micro-clots or emboli and they are not seen on a Scan. But they do damage and are there so the most important thing is to be properly anticoagulated with Warfarin at a rather high INR and stable also. Then you are protected from further clots. Perhaps you do not have any clots but it is important to keep your INR steady with all your drugs now.
Talk to your Rheumatologist and see if he agrees with you. Hope so!
I did raise my INR with my rheumy but he didn't really respond or tale much notice. Said he wasn't worried about my INR but more my symptoms. I am back at warfarin clinic tomorrow so will ask the questions
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