Pulmonary Embolism, confidence somewhat shattered - LUPUS UK


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Pulmonary Embolism, confidence somewhat shattered

LupusKaren profile image

First of all Happy New Year everyone.

Since September I have been generally unwell, with a myriad of symptoms, too numerous to mention, but one problem that troubled me most, breathing problems, and the feeling of being throttled.

3 trips to A & E, had me sent away with a range of dismissive suggestions, and I continued to get worse.

My GP was becoming increasingly frustrated, as was I, so I paid to have a private thyroid scan to see if this accounted for my issues, and my GP ran a full thyroid panel. My scan showed multiple nodules, deemed non-suspicious, and thyroid panel normal.

In amongst all this, my lymph nodes in neck, armpits and groin have become enlarged, and stayed enlarged, the groin ones particularly very uncomfortable, this has been the case since September.

Fast forward to 23 December, my breathing became worse, accompanied by severe chest pain of the stabbing variety, my husband called an ambulance and I was taken in. Diagnosis pulmonary embolisms, with enlarged lymph nodes behind the heart. I was started on Heparin injections into stomach and continue this at home.

I was taken in again on Boxing Day, diagnosis pleural rub, and pleurisy, and enlarged lymph nodes.

Opinion is divided, is this Lupus or APS driving this, but in any event, I have an appt with Hematology tomorrow, which I had pre-arranged because I was concerned at my continual high Cardiolipin and Beta Glycoprotein markers, and the fact I was on no thinning medications due to them being stopped, as they were causing me stomach ulcers, and blood in my stool, so was looking for advice, irony now being of course I have had an event.

Regards the enlarged lymph nodes, my GP put me on fast track pathway to ENT to get these looked at, this is the day after my Hematology appt, so two heavy days at the hospital.

I usually take all things in my stride, and am not easily spooked, but this has shaken me up, mainly because the young A & E doctor who did bother to send me for CT with contrast, was graphic in what could have happened to me left any longer, and I am now struggling that I have been suffering for weeks, and simply was not taken seriously. I know these things happen, they shouldn't, but I now find myself totally lacking in confidence in the very people who are supposed to help us.

I am naturally concerned about the lymph gland issue, Lymphoma is swirling around my head, not helped that I feel so absolutely wretched, my body has spectacularly crashed on me, and my mobility is seriously bad, due to pain.

I know no-one has any magic answers, for the first time since diagnosis I feel vulnerable and not going to lie, scared.

29 Replies

I can hear that you are really struggling. There is no way anyone could “take in stride” a pulmonary embolism, enlarged lymph nodes and pleurisy. Your doctors are struggling too. But they are being paid to meet the challenge. Is it possible to separate what you know now and what is okay from the future possibilities? Thyroid nodules are common and usually benign. Many of us have them, and yours can now be monitored. The important thing is to get clear on why the A & E did not find the pulmonary embolism when you went there with difficulty breathing. It could be many things — too early, not enough signs to warrant further investigation or missed diagnosis. CT scans have to be done with caution because of the cancer risk. You need to have faith in your doctors. Your question is not only reasonable, it is a question they will be asking themselves too. In other words, how was this missed? After you continue with the new tests, maybe you will decide to seek a specialist in lupus and APS to care for you. I am really hoping they get things sorted out soon and you get on a path to better health. K

LupusKaren profile image
LupusKaren in reply to KayHimm

Thank you KayHimm, I am already under the care of an excellent Rheumatologist at the hospital I had the dismissals from A & E in, very expert in SLE. My records clearly show what 'at risk' I am, but it was not acted on, and trust me, I am not shy of speaking up, and did so, but was on one occasion sent away with 'acid reflux as cause', hence the now lack of confidence.

I will get past this, and I will be asking if there is any safety measures that can be put in place permanently, to prevent this every happening again.,

KayHimm profile image
KayHimm in reply to LupusKaren

Good idea. It is concerning that maybe the proper tests were not conducted. You may be able to order a review. I bet your rheumatologist was not a bit happy about this.

Thank you Louise.

Oh karen: this is absolutely dreadful! Am glad you posted. Thank you for every detail. I feel you’d be a most unusual person if you didn’t feel scared right now - especially of A&E (my experience is that A&E is always a nightmare potluck thing: they’ve saved my life...but they’ve also totally mistaken serious issues). Am relieved you have a really good GP & Rheumatologist. And i hope hematology + ENT truly Step Up for you.

Gosh i am horrifed by you going through all this, but also all too aware this dire stuff does happen to complex patients like us...over & over & over again...i like to think the medical fraternity means well, but it seems to characteristically TRY IT’S BEST to always go for the simplest & most basic explanation for even the most obviously complex & least basic of combined manifestations

Am so glad you’re here...am sending you ALL my love...please keep us posted when you can XOXO Coco

LupusKaren profile image
LupusKaren in reply to Barnclown

Coco, bless you, thank you so much for the truly lovely reply. As you know, we share the same Rheumatologist and hospital, and up until recently, my faith had been 100% restored in my care, after 12 long years battling to get a diagnosis, just two flippant doctors, undid years of trust, and transported me right back to bad times, even I am shocked at how low I have become over all this. Thankful for my GP, and Lupus UK forum.

I will keep you all posted of course, as I firmly believe that sharing news, good and bad, could help someone else one day.

I am going into my hematology appointment tomorrow with an open mind, I have my husband with me, who has been, and is my rock, normally I have felt confident to go to appts on my own, but not at the moment.

I did get the last Respiratory Consultant to forward his discharge notes to my Rheumatologist, so she will at least have sight of that prior to me seeing her in Feb, and I am making it a point of asking all other disciplinary medics to copy her in as well.

Barnclown profile image
Barnclown in reply to LupusKaren


If you’re anything like me, a percentage/proportion of the distress you’re feeling is due to medicalPTSD (MPTSD) flaring due to this current ordeal...my feeling is that MPTSD is only natural in complex patients who’ve been messed around LOADS by the system...posting the way you have is GREAT therapy for MPTSD 👍👍👍👍 it REALLY works for me

In my experience, this being messed around brands one for life....XOXOXO

Hello LupusKaren

A very sorry tale, and like KayHimms says, there is no way you could be expected to just shrug this experience off as if nothing bad had happened. I hope the clinicians working with you now appreciate that they not only have to do a good job for the future, but they need to take into account how the mistakes they have made up to now will affect your trust and anxiety.

It's a scary feeling when one realises that our clinicians sometimes know a whole lot less than we ourselves do, isn't it? All good wishes for this to be resolved quickly. x

LupusKaren profile image
LupusKaren in reply to whisperit

Thank you Whisperit for your lovely supportive message. You are right, I am lurched from tears, anger and to now incredulity, that I was dismissed as I was, especially given the seriousness of my condition, it could have been fatal. I know A & E is under strain, which is why I first sought 111 advice, tried to get to a private GP, anything to stop out of A & E, but 111 called the ambulance twice, not me. The consultant who had my lungs CT scanned told me it was a good job I had gone to A & E, and it is those words that are tormenting me now. So scary, and I know I am not an isolated case countrywide either.

whisperit profile image
whisperit in reply to LupusKaren

Yes, I'm getting to think that A&E is a completely different service to all the other parts of the NHS. A&E will stop you dying overnight, but won't try to work out the underlying reason why you are there. Every other service will determine which standard treatment regime will help you go about your everyday life, but run a mile if you look like you might collapse in front of them. Inpatient care is just lying in bed long enough to get from A&E to turning up in the outpatients clinic three months later. Am I sounding too cynical !? Ah, don't let them off easily, LK. Refuse to let go of their ankles until they come up with a plan that sounds credible to you x

LupusKaren profile image
LupusKaren in reply to whisperit

Well done Whisperit you made me laugh, and I most certainly will not be leaving my hematology appt without a care plan that I agree with, how about that as a promise?

whisperit profile image
whisperit in reply to LupusKaren

sounds good x

PMRpro profile image
PMRpro in reply to LupusKaren

But it isn't a new thing - OH has been out of the NHS for 9 years and it was a bit before that that a member of his staff died after a DVT was missed (he was too young they claimed) and then it went to his lungs and he had multiple PEs that were missed. All they have to do first is a simple blood test in any breathless patient, just in case...

Blood cloy &lupus seem to go together .I’m sure haematology will get you on warfarin.i had my first blood clot at 37 I’m 65 now and am ok on it .keep your chin up.try to go on a health kick .it really will help ,really boring ,good luckxxx

Thank you Shorthouse, I am on Heparin injections, and see no reason to move me off this tbh, but of course will be guided, within reason, by Hematology. Health kick began this time last year, dairy, gluten and wheat free, and lost 2 stone, and have lost a further stone since September, don't drink, don't smoke, my only downfall, exercise atm, due to hip issue, now have mobility issues, but I do move, to keep my lungs moving.

Brilliant Karen I’ve lost about the same it’s difficult (I don’t move much with Chest probs too)I try to do small walks in beautiful places.you are just going through a bad patch .things will get better soon I hope .we all seem better in the warmer days .love Pam x

Gosh Louise, I hope my experience has not distressed your memories, I would hate to do that. You are right, the young doctor, I have his name, and plan on seeking him out to thank him, is a huge positive, he was so thorough, and told me what he suspected before he even sent me off for CT.

Hi, I have lupus and I got the pulmonary embolisms 2 Christmases back. I didn't have the rest of what you have but I am on apixaban [blood thinner] and am now ok. I do still get breathless and my GP said it is a type of scar tissue left by the clots resulting in reduced lung capacity, I only found this out recently as no one had bothered to tell me before that it could happen after the clots. heparin lovely stuff, I found it hurt less if it's injected quickly, some nurses thought they were being kind and did it slowly but this just makes it more painful. hope you are ok

Thank you Suzannah, I am sorry you have experienced PE. I am having virtually no pain on injecting the Heparin, a bit of a sting, but soon over. I was told I would probably remain breathless, just as you describe, so am prepared for that side issue.

I’m so sorry about this awful experience and the medical PTSD it has left you with.

I had a terrible year in 2015 with several potentially fatal misdiagnoses’s from A&E in a small community general hospital. I know it’s very hard to describe how much this rocks our confidence in so many ways. I’m still affected but it helps explaining it to my doctors so they know why I’m wary.

I’m just so glad they did get there in time in the end. May 2019 bring very much better things for you. 🤗

Quite an awful tale Karen and a timely reminder for all of us here. We really do have to be determined to push when we know something is very wrong.

A great idea to write to the young doctor who was correct.

A relative of mine died of haemachromotosis ( too much iron in the blood) He was at deaths door with heart and liver issues and it was all dismissed as he ran a pub ,but seldom drank more than a small glass of wine all his life. All the medics assumed the cause of his liver failure was drink due to owning a pub, despite he and his wife protesting.

By the time the young doctor decided to run the blood tests for iron overload it was too late and he died a couple of weeks later.

We cannot be too careful!!

I am recovering from a stroke just now which was missed for five weeks!

You have spurred me on to telling my tale soon, it has left me with bad eyesight problems.

I think as Coco said we all have an element of MPTSD, I know it kept me away from A and E when I should have gone.Like you I dont have much faith in A and E beyond keeping you alive for 24 hours!!

Many thanks for telling us your story and hopefully this will be a huge warning to those medics who care for you.

Hope also you begin to pick up soon but I so understand this scared feeling. Only thing is when they have made a dire mistake keep pointing it out to them so ,they never forget!!

All the best now with new treatment.xx

Cuttysark, I am so very sorry that you too have had such a terrible experience, for a stroke to be missed for 5 weeks is inexcusable, and I am so sorry you have been left with eyesight problems, I hope that this will be able to be rectified for you.

Thank you for taking the time to respond to my post Cutty, and I hope over the coming time, you can make a good recovery. Wishing you all the very best.

cuttysark profile image
cuttysark in reply to LupusKaren

Thanks so much Karen xx

Oh my.love I am so sorry...of course you are frightened but hold onto the fact that something is being done now and you are being monitored. Stay strong and let the group here support you xx

Hi, sorry to hear all your problems, I can relate to a lot of them. A few years ago my doc sent me to the hospital, he thought I had a pulmonary embolism and they x-rayed me. Consultant told me he was 90% sure it was and started me on heparin and antibiotics. I got kept in and had a scan the next day. Turned out it was pheumonia. About six months later I had problems breathing when I moved anywhere, visited the doctor who printed off leaflets on anxiety. Told him I don’t get anxious going to loo or moving about my house. My daughter phoned an ambulance because I couldn’t breath and they kept me in. Was in 11 days, again maybe pheunomia? Eventually I got a high resolution scan which finally showed pheumonitis, which they said is caused by an allergen. Got tested for the usual feathers etc, nothing could be found that caused inflammation in my lungs, that’s when they told me I had an excessively high positive RA Factor in my bloods. Referred to rheumatology and was on steroids for about a year. After many visits to her she came up with mctd. Six months ago after being ill, losing weight, night sweats, enlarged lymph nodes, my doc referred me to hospital. Turned out a had a rare form of lymphoma , not curable but hopefully controllable. Haematologist told me it was quite common with auto immune problems to get lymphoma. Fast forward six months of chemo, scans etc, I am now in remission. Have another appointment with rheumatology at end of month and for once rheumatology now taking me seriously and has discussed with haematology what course of medication to put me on. My immune system totally all over the place. She told me I probably have sjogrens now as there is a higher risk of lymphoma with it. Sorry for the rant in between but I feel I’ve been getting fobbed off for many years with lack of understanding from doctors who never seem to really know what’s wrong with me. This is why I can relate to what you have been going through. Haematology will prob organise a FNA biopsy on one of your lympnodes, this is the only way to confirm diagnosis then probably a ct scan. Take care and fingers crossed doctors get it correct this time.

LupusKaren profile image
LupusKaren in reply to Lizard28

Lizard28, thank you for sharing your very harrowing story, my heart goes out to you, it really does. Whilst your post is hard to read, as everything is still very very raw, I appreciate your being so candid, thank you. I wish you all the very best for your treatment going forward.

I was taken back in by ambulance today, severe pain. Long story short had to really fight to get taken seriously. Shockingly discovered fracture of spine, missed from ct last year, plus bone density queries. Dexa scan ordered, and other stuff ordered. Back tomorrow to ent for lymph node investigation. This on top of pe debacle, missed hematology now in Feb. I insisted my grave concerns were alerted to my lead consultant. I am absolutely devastated walking around with pe, spine fracture, and also xray today osteoporosis in hip and groin. I have no confidence anymore, and most definitely do not feel safe.

Lizard28 profile image
Lizard28 in reply to LupusKaren

Hi Karen, your experience just gets worse, how awful, I am so sorry you are going through this. I'm glad you stood your ground with them and at least got some results. The Ent doctor will put any tests forward if needed and probably refer you quicker to hematology if required. Sending you hugs 😘 Stay strong xx

This is really shocking Karen!! Thank goodness you felt able to fight to be listened to. It is seriously scarey and now you have even more complications to deal with!

Am glad your concerns have been sent on to your lead consultant.

Just shows how proactive we have to be ,even when at our most vulnerable. You would have thought after missing so much last time they would have upped their game with you by now.

Hope they start treating the osteoporosis ASAP and you get decent pain relief for the spine fracture.

Sending healing thoughts. xx

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