r/ClotSurvivors

Hi all. I have my post-hospitalization appointment tomorrow. I spent less than 24 hours in the hospital when I was diagnosed with a PE feel like I know very little about my limitations and what I should expect.

I have a list of questions (can I drink alcohol, can I go on a road trip, what are my activity restrictions, etc ).

But I’m wondering if anyone has questions they wished they’d asked sooner or that you recommend I add to my list.

Hi everyone, I was recently admitted to the hospital for a week for a pulmonary embolism and deep vein thrombosis and have been discharged for 2 weeks now? Context- left leg clots from my foot all the way up to stomach ish, plus multiple small ones in my lungs.

While in the hospital after they put in the leg catheters for medicine to be pushed throughout my leg i developed really painful spasms, even after they’ve taken those out and still healing I still have spasms but very itty bitty but noticeable to my partner laying next to me specifically when I lay down on my back even with my feet elevated or not elevated or sitting in chairs. They’re not painful anymore but it’s a weird flutter sensation and tightening if that makes sense? The doctors/surgeons never said anything about spasms in recovery or even a timeline when I had brought it up to them.

Has these ever gone away for anyone? Any advice or tips? Also is my leg permanently changed/damaged now?

The doctors were very eager of saying I’ll be fine and bounce right back to fully normal since I’m 22 but I have my doubts unfortunately.

I have a longstanding Superficial Thrombophlebitis at the Saphenopopliteal Junction. Been ongoing for 6 months, started at 124mm but down to 49mm in that time. Haven't seen much change in the last 2 months and have been referred to Vascular Surgery. Also taking Rivaroxaban (10mg) daily.

I am due to do a charity skydive in 4 weeks. Fundraising all done and ready to go. I asked the doctor if I can still do it but they were very non-commital in their answer and couldn't give me a straight one.

Has anyone got any experience or advice?

I am 61 year old male who has had two provoked clots both SVT 30 years apart. One in each of my calves after an ankle injury. My doctor has prescribed me blood thinners Rivaroxaban. I do not care for them and sometimes worry about the long term affects. I understand that after having two I have been told I must be on them permanently.
I was wondering if anyone else has had the same experience.
Thank you and be kind.

I am 72 recently diagnosed with a blood clot in the pulmonary artery of my right lung. There’s no evidence of a DVT in my leg. I am on Eliquis right now. I’ve been told it is a relatively small segmented clot, but I am wondering from those of you who have been through this process did you suffer severe fatigue and shortness of breath throughout this recovery? I am on oxygen full-time and it’s kind of hard because I don’t look sick, but I can’t do a lot of things and I feel like people don’t understand. I also have pain that radiates up my neck and behind my ear when I cough it hurts like hell I read that pain can be referred to the vagus nerve. I’m just wondering if any of you can provide some insight thanks in advance.

So I had Fresca a couple of times while I was at my daughter’s house and I didn’t think about that interaction between grapefruit and Xarelto. When we realized it, I stopped drinking it, but is there any repercussions my having drunk grapefruit sodas? How serious is the reaction or how much grapefruit do you need to cause it? Is it OK for me to occasionally have one Fresca or grapefruit soda? Do I need to be reading labels for grapefruit in other products? And are any other citrus fruits—pomelos, tangerines, lemons, etc.—potential cause for interaction/interference with Xarelto?

I did Google it, but couldn’t find anything except a warning that you shouldn’t consume any at all. It doesn’t talk about what happens if you already did it without realizing it was grapefruit.

Thank you for your help.

Posting on here because I've hit a wall and don't know what to do.

I'm not looking for direct medical advice or to freak myself out about the possibilities, just advice on where to go next. FYI I'm in Victoria, Australia as well.

I've been a medically uneventful person for my entire life until about 2 years ago. I started experiencing some pronounced hair shedding, dizziness, and fainted during a shower. My dr told me it was likely due to my dramatic weight loss caused by being on vyvanse and stress.

Then I had an unprovoked DVT in my arm and a PE (25yo at this point). They have done numerous tests and still haven't figured out the cause - I'm told this actually isn't an uncommon outcome. I have been on blood thinners ever since.

That same year, about 10 months later, I had a tonic clonic seizure. MRI, EEG, blood tests, CT scan, everything normal. I was allegedly on the waitlist for a seizure clinic and kept calling, talking to my dr who contacted them and put through a semi urgent referral - an appointment never came. 6 months after that first seizure, another tonic clonic seizure. Same ER tests all normal. No MRI or EEG yet. No seizure clinic appointment yet. Still waiting to see my haematologist again but not contacted about an appointment.

My dr seems worried and has ordered more blood tests which is great but I still haven't spoken to a single specialist about my 2 seizures and have now been referred to 2 separate hospitals as the first (same one I've been to for all previous emergencies) hasn't responded and told me over the phone "some people are on the waitlists for years, it is what it is".

I don't know what to do. I'm not able to afford full private health care. I haven't really experienced stuff like this before and don't know what my options are. I have ADHD and other mental health issues and feel so overwhelmed by all of this. I'm also working and studying. I don't have parental support, although I have a wonderful partner who also doesn't really know what to do.

I've already had to push for drs to consider a possible connection between the clots and the seizures.

I hit my head really hard during both seizures and I'm scared as I'm on blood thinners. I've been experiencing more issues since my last seizure - more easily short of breath, tinnitus, fatigue, blurry vision. All my dr can do is make referrals to hospitals that move at the pace of a snail or don't even respond to me. I don't want to/have the time to sit in the ER for non emergency symptoms only to be dismissed by hospital staff (I went once when I had similar pain in the same arm as my DVT).

How can I advocate for myself?

If anyone has experienced these symptoms together and has a diagnosis, what did you get tested for?

Tldr; I've been unable to get anywhere with medical treatment after experiencing a DVT, PE, and two tonic clonic seizures. I'm scared and can't afford fully private health care and want to know what my options are for getting help.

Fellow APS friends. How do you improve or deal with fatigue, no energy, brainfog, pain (without antiinflammatory medications) migraines, body aches and weaknesses in hands arms and legs.

Any supplements? Foods? Anything?

I'm really struggling.

Thank you.

Hi this post is about my father 68M. He had blood clots in his Lungs and one knee around June of 2024. I'm not sure what else could be the cause but he gets rashes on his legs that are VERY red, swollen, and seeping. He is diabetic, and obese (360 lbs 5'10). He has never had any leg problems like this before and it seemed to start afyer taking eliquis.

He's gone to every specialist you can think of to figure out what is the with his legs no one seems to know. He's been on antibiotics for months for it.

His cardiologist thinks it's a reaction to eliquis so he took him off of the medication and didn't put him on anything else. His reasoning was that eliquis had already done it's job. This was a few weeks ago. At the same appointment they switched his his blood pressure medication which he has been taking for years before eliquis and never had any side effects from it that I know of, definitely not this thing with his legs.

I don't remember if this happened before he got off the eliquis or after but my dad's dog killed a rabid skunk. My grandma was extemely worried about rabies since he had open sores on his legs and that there was tall grass around the skunk my dad may have gotten it's blood or something on him when he disposed of it. My dad knew he would be fine and nothing looked infected from it obviously but a few days later he took the starter rabies shot and immune globulin to give his mother and maybe himself to an extent some piece of mind.

A day after this he started saying his legs were so much better. After this he was saying he doesn't know what caused his legs to clear up, switching the BP meds, no more eliquis, or the immune globulin.

After the last dose of the rabies shot he didn't feel well so he didn't eat much for 2 days. Then Thursday morning he could feel his blood sugar dropping and went into the kitchen to eat. He passed out. He has a very bad black eye now and they are saying he has a blood clot in both lungs and his right leg. (There may have even been some speculation that the clots in his lungs were the same ones from before).

I'm here at the hospital with him and his legs look normal but they have some scabs and roughness still from when he had the rash.

Yesterday he was finally admitted to a room and saw the cardiologist.

I know he was just doing his job but he seemed to not care about the side effects that elquis may have been causing and whenever my dad was talking and telling him how he felt and how he got here he just seemed not to care and was very dismissive and condescending. That doesn't matter though. 😅

He was adamant that my dad would be taking eliquis again for the rest of his life there's no reason to try any other medications it MUST be eliquis.

I mean there have to be alternatives that work well right? I'm not saying this is an alternative but the hospital has had him heparin the entire time.

It's just weird to me that it's a one size fits all thing and it must be eliquis.

My cousin also told me she googled the rabies vaccines and that a albeit rare side effect is blood clots.

I guess we will know if eliquis is the cause of the leg swelling and rash of he goes back in it and it comes back.

I of course am not looking for medical advice just some input. Maybe anything I should know? Or any questions we should ask? Questions comments any input is welcome.

Thank you so much!

Hi all, thank you in advance for reading. I’m 29, 4 months postpartum. About 10 days ago I developed persistent right calf pain. No swelling, discoloration etc. The pain wasn’t bad, probably a 2-3 out of 10. The only other symptom with it is random feelings of heat going down my leg into my foot (I can’t feel this heat with my hand, only internally).

I had a negative ddimer drawn about 3 days after the symptoms started. I developed chest pain and SOB about a week after so I went to the ED. They also did a ddimer which was negative, and since it was negative didn’t do any imaging.

The pain is persisting and is spreading up my thigh. It’s not worse with movement or when I bear weight, it’s just a weird constant dull ache concentrated deep in my calf. I haven’t injured my leg or pulled a muscle. I’ve never felt anything like it before.

Have any of yall had something like this and it be a DVT? Should I go back to the ER and request an US? I fear they won’t do one if my ddimer is negative. My big fear is that I threw a clot when I was freshly postpartum, it’s been stagnant for a while and as a result my ddimer is showing as negative.

Hello 😊

I've got an issue recently: I got super bloated.

My face has gotten very round, my arms and wrists are filled with water, same with stomach and legs.

I've stopped taking my pill two months ago. The same time as my double pulmonary embolism.

I know that stopping the pill can lead to bloating and water retention. But I read it only goes on for two to three weeks.

I'm also on Eliquis 5mg twice a day.

Anyone else as gotten water retention after an embolism? How did you arrange it?

Sorry if this is the wrong group but I got a question.

I've been vaping a while. I recently broke my foot and was put in an aircast until I got a hard cast a week later. About a week after I had the hard cast, I got this horrific calf pain and my local ER found 2 clots in my calf. They cut the cast and now I'm in this heavy boot that I feel like is doing more damage to my broken foot but what do I know, I'm no Ortho.

Anyway, they put me on elequis and never told me to stop vaping or dabbing. This morning I went to reach for my vape and thought "could this be doing more damage?"

So I asked Gemeni, did some reddit research (just saw alot about Vaping and PE which is why I'm posting this) read that it can definitely mess with the clots.

So I stopped this morning and now I'm just curious if there's anyone else out there that's been in a similar situation with a DVT in the leg/calf. I've been on elequis for 3 days now

Did you keep vaping or did you stop? I'm trying my hardest to not want it but now that we're in the evening I'm struggling.

And for those who did stop vaping, did you start again when you were clot free?

I went to my ER yesterday after I was sitting on the couch, looked down and realized my right arm/hand looked kind of… gray. I had IV compazine and Benadryl about 2 weeks ago for a post concussion migraine and noticed around 3 days later that my bicep felt engaged even when it wasn’t. Tender from the crook of my arm up through my mid upper arm. Everyone told me it was just my anxiety, and I personally feel that was a fair assumption, because there was swelling but localized to the bicep with no redness and no obvious heat to the touch.

On and off it would feel like my hand just wouldn’t retain heat, but sometimes it was like it would randomly refill with blood and it would be warm again. If it was under blankets it would retain heat.

Anyway I went to the ER, and the doctors were ambivalent to say the least but they did do a Doppler, and sure enough I have a “nonocclusal superficial thrombosis at my antecubal fossa.” They offered anticoagulants but also said conservative care was an option; I chose conservative care (warm compresses, NSAIDs, and elevation) because blood thinners sound iffy but now I’m wondering if I made a mistake?

They want me to follow up with my GP after the holiday weekend but I live in a rural town where no doctors offices have medical imaging tech so I’m just wondering what my doctor is supposed to do when I see her.

Anyone have experience with this? They said that it’s in my cephalic vein so it’s still superficial but has the capacity to become DVT if it travels. Is that likely? I’m just a bit… confused 😅

Hello all
Got diagnosed with dvt in my left calf 3 weeks ago and was prescribed Xarelto 15mg 2x/day from the ER for 21 days. At my visit with my hematologist they then prescribed me Xarelto 20mg 1x/day to start for three months after i finish my 21 days.
I usually take my first dose at 10am and then my second dose at 9pm.
My hematologist was really quick in my appointment and kinda dismissive about genetic testing (on birth control) and there’s no way to message or call to ask how to switch over to the other dosage, and i really don’t want to pay 80$ again for a new visit just to ask.

So has anybody else had to switch from 2x to 1x/day and what’s the best timing to switch over to that without possibly messing up the dosage? This is my first dvt so im still anxious and new to it all.

i haven’t had my period in about 4 months, so my gynecologist agreed it’s time to induce it. i have a history of DVT that was prompted by estrogen when i was on combination birth control pills. obviously, i asked my doctor if this 10 day, 10mg course carried any similar blood clot risk, and she said no since there’s no estrogen involved and that i would be fine.

well, i’m a longtime hypochondriac and while it’s now under control, i googled if you can get blood clots with it, and the internet said yes and further scared me. i know i should listen to my doctor first and foremost, but this has sparked a mini panic. i’ve only taken one dose tonight, but i also just got a concussion, so i’m a mess. similarly asked the concussion specialist i saw if there’s any risk to my brain here and he had no concerns.

now i’m feeling all psychosomatic too. what have your experiences been with provera? has anyone worked through this fear before?

Hello everyone, going crazy trying to figure out the cause of my worsening symptoms. On June 6th I had a stent for an 85% iliac compression. Immediately following the stent I honestly felt on top of the world. I literally balled my eyes out because I couldn’t believe I’d finally found relief. Unfortunately, that was short lift because about a week later I developed clots and everything went downhill to say the least.

I was on vacation when that happened and thankfully found a vascular doctor in Mexico that helped detect clotting and some reflux. It’s been hard advocating for myself as doctors just don’t believe that the leg or pelvis can be the cause of so many upstream symtoms. Upon returning home I immediately saw my Interventional radiologist, he did a follow up ultrasound and venogram to ensure the stent was patent, which it is. There are some smaller clots in the stent, a small one in the calf, one above the knee, a big one around the thigh causing full occlusion there, but I have blood flow probably from collaterals. Problem is, I feel worse than before I got the stent and had the compression. So bad that I landed in the ER from a scare.

Nothing else has changed post stent other than the thrombosis with reflux and being put on Eliquis for the clots. I’ve had CTAs done which showed nothing. So the only thing that could have made things worse are the clots or the Eliquis. I decided to log everything with chatGPT and send my dr an email that could hopefully convince him to take more actionable steps than just waiting an eternity for the clots to dissolve if they even do!?

I apologize for the insanely long post, but the question is, am I looking at this the right way? Or, due to the stress am I overthinking and over analyzing the burden these clots and reflux could be causing? Is it not enough to be causing these things outlined below? To me, it makes sense that symtoms were bad prior to the stent, improved dramatically post stent, then returned with a fury upon thrombosis. ChatGPT seems to agree, although I always second guess it due to possible error and guided answers. Could it be the Eliquis side effects? I feel like I’m at a dead end with nothing left to turn to medically.

Here is the email I sent my Dr if you’re up for a read. Thank you!

On June 30th I was out walking and had an episode of extreme fatigue/lethargy, shortness of breath, tachycardia, and increased BP. Lying down felt slightly better, but getting up made it worse. Due to the blood clots I went to the ER to be safe. During this episode, ekg also detected st segment deviation which I understand simply means the heart is being stressed out by something enough to show as a change on ekg. ER did a ct of brain and chest and found no PE or brain aneurism.

I’ve been taking it a bit easier since, treating it like an orthostatic/pots like reaction and been feeling better. 
I have been trying to get to the bottom of the reason I feel so unwell and I think I may be on to something. Post stent, I felt amazing. Better than I have felt in a decade. Had no orthostatic/pots like issues at all the days immediately following the initial stent. That all turned around when thrombosis started, and since then I actually feel worse in many ways. In my opinion, that is a direct correlation.

The question is, why since the stent is patent and there is flow. Iliac flow should be better despite thrombosis. However, after researching further, trial and error with triggers that bring on symptoms, and going over the tests and imaging I’ve had done, it occurred to me that the ultrasound I had done while in Mexico showed blood flow reflux. I wonder if that was present prior to receiving my stent, or brought upon from the thrombosis? The predominant symptoms right now are orthostatic intolerance nature where lying down simply feels better than standing up. Standing up causes lightheadedness and sensations of a lack of venous return, like body circulation cannot keep up. Post stent, exertion output felt improved even, and now it is feels substantially reduced. Simple tasks feel extremely “heavy.” In my opinion, the thrombosis combined with the reflux are the cause, especially since all other imaging (ct from the ER and cta ordered by Dr reddy and my primary) are normal. 

I have been logging my reports, progress and symptoms with AI, and it seems the reflux is in significant enough veins to causing this combined with the thrombosis. I have the following please for Dr Reddy to consider;

Does the ultrasound report from Mexico show reflux?

Yes—your report actually does document reflux, and it’s one of the more important findings. The question is where the reflux is occurring.

The key sentence is this (translated):

“Existe inversión de la onda al Doppler espectral en el sistema venoso profundo, afectando la vena femoral común, vena femoral superficial en el primer y segundo tercio…”

Translation:

“There is reversal of flow on spectral Doppler in the deep venous system, affecting the common femoral vein and the superficial femoral vein…”

That sentence is describing venous reflux (backward flow).

⸻

The impression (Diagnosis #2) is even more explicit:

“Insuficiencia venosa del sistema profundo y superficial del miembro pélvico izquierdo…”

Translation:

“Venous insufficiency (reflux) of the deep and superficial venous system of the left lower extremity…”

It then lists the affected veins:

**• Common femoral vein**
**• Superficial femoral vein (first and second thirds)**
**• Great saphenous vein (upper thigh)**

So the radiologist is saying there is deep venous reflux, not just superficial varicose vein reflux.

⸻

Does it specifically say the iliac vein is refluxing?

No.

This ultrasound does not visualize the iliac vein well enough to diagnose iliac reflux directly.

Instead, it shows reflux downstream in the:

• Common femoral vein
• Femoral vein
• Great saphenous vein

The ultrasound cannot determine whether that reflux is:

• caused by valve damage from years of May-Thurner,
• caused by persistent iliac obstruction,
• caused by the recent thrombosis,
• or a combination of these.

⸻

Could the iliac vein still be the underlying cause?

Yes.

Because you had:

• 85% left common iliac vein compression
• Long-standing obstruction before the stent
• Then thrombosis after stenting

all of those can lead to elevated venous pressures and eventually damage the valves in the femoral veins, producing the reflux your ultrasound detected.

However, this ultrasound cannot prove that the iliac vein itself is currently refluxing. It only proves that reflux exists in the veins it examined.

⸻

One thing that stands out to me

The report diagnosed deep venous insufficiency only 13 days after your stent placement and at the same time it found subacute thrombosis of the superficial femoral and popliteal veins. That makes interpretation more difficult, because an acute or subacute DVT can itself cause abnormal flow patterns and temporary reflux. Some of the reflux may improve after the clot resolves, while some may persist if the valves were damaged.

The next study that answers your question

The best test to determine whether the iliac vein is still contributing is not another leg ultrasound. It would usually be a follow-up with your vascular specialist using:

• a dedicated iliac venous duplex (if technically feasible),
• CT or MR venography, or
• if symptoms remain significant, repeat venography with IVUS, which is considered the most definitive way to evaluate the iliac vein and stent.

Given your history, I think it’s very reasonable to ask your interventional radiologist: “Is the deep venous reflux I’m showing secondary to long-standing May-Thurner, or do you think there’s still an iliac outflow problem despite the stent?” That’s exactly the question these follow-up evaluations are meant to answer.

Can this reflux be occurring due to the clot? mainly the big clot? I felt perfectly fine before the clot. Are the veins where the reflux is occurring significant enough to be contributing to the upstream venous symtoms I’m experiencing?

This is an excellent question, and I think your timeline is actually one of the most important clues.

Based on what you’ve told me:

• **Before the clot: You had significant May-Thurner compression but were active. You were running, going to the gym, and although you had some symptoms, you did not have the profound orthostatic intolerance and weakness you’re describing now.**
**• After the stent: You initially experienced a dramatic improvement in many symptoms (head burning, tinnitus, post-meal symptoms), suggesting that improving iliac outflow had a real physiological benefit.**
**• After the thrombosis: You developed much more severe symptoms, and your ultrasound documented both subacute DVT and deep venous reflux.**

That sequence makes it very plausible that the clot changed your venous hemodynamics.

Could the clot itself cause the reflux?

Yes—absolutely.

A large clot in the femoral or popliteal veins can:

**• Prevent the vein valves from closing properly.**
**• Distort blood flow around the clot.**
**• Increase venous pressure below and above the clot.**
**• Produce temporary reflux while the clot is present.**

Sometimes the reflux improves as the clot resolves. In other cases, if the clot damages the valves, some reflux can become chronic (known as post-thrombotic syndrome).

Your ultrasound was performed while the clot was still described as subacute, so it captured the veins during an abnormal state.

Could these veins contribute to your “upstream” symptoms?

This is where it’s important to be careful.

The reflux documented involves the:

**• Common femoral vein**
**• Femoral vein**
**• Great saphenous vein**

These are major venous outflow pathways from the leg. They are certainly important enough to cause:

**• Leg heaviness**
**• Leg swelling**
**• Venous hypertension**
**• Reduced exercise tolerance**
**• A sensation of poor venous return from the affected limb**

Whether they directly explain symptoms like chest tightness, palpitations, or orthostatic intolerance is much less certain.

Deep venous obstruction or severe outflow impairment can reduce venous return from the leg, but the body usually compensates remarkably well through the opposite leg and pelvic collateral veins. So while your leg venous disease may contribute to feeling unwell, it’s difficult to attribute all of your upstream symptoms solely to the reflux seen on the ultrasound.

Your timeline is important

One aspect that supports continuing to investigate the venous system is this:

**• You improved dramatically after the iliac stent.**
**• Then worsened after developing the DVT.**
**• The ultrasound during the DVT showed reflux.**

That makes me think the clot may have either caused or unmasked the reflux.

What I’d want to know next

After you’ve been on anticoagulation long enough for the clot to organize or resolve, I’d be interested in seeing:

1. Is the clot gone?
2. Is the deep venous reflux still present?
3. Is the stent widely patent?
4. Has the reflux improved compared with the acute study?

Those answers are much more informative than the ultrasound performed during the active thrombosis.

My impression

Given your history, I think it’s more likely than not that the clot contributed to the reflux seen on this study. Whether the reflux becomes a long-term problem depends on how much the valves recover after the clot resolves. Since you felt substantially better before the thrombosis, there is reason to hope that at least some of the abnormal flow is related to the clot itself rather than permanent valve damage.

That’s a very reasonable topic to discuss with your interventional radiologist at follow-up, because repeat imaging after treatment can show whether the reflux persists or has improved.

I have APS and I am pregnant. I am on lovenox and will be throughout the pregnancy. Last week I injected myself in my right abdomen and I went a little bit faster and it hurt. Then the area bruised and I had a small bump. It's been a week and the pain is there only when I press on it and the bruising or the small bump hasn't resolved yet. I will be seeing my doc only after 15 days and I am worried about this bruising. I can see the colour is slowly changing from deep purple to bluish now. But there's a small bump at the site of injection still. Is this normal?

Hello, I'm a 31 yr old female and recently discovered I had bilateral blood clots in my lungs back in February. I've been on Eliquis since but my last appointment with my regular doctor told me to stop after the end of August. Is there any side effects I need to worry about before going cold turkey? I'm super nervous since this is a major step for me.

I’m 66 and last year I fell about 4’ and landed on my rump on concrete. Stoved me up for a couple of days due to soreness. I was expecting a large bruise back there but it never happened. About a month later we to an evening movie. Afterwards I helped a couple of friends load a tiller into the back of his truck.
A short while later, I jumped in my friends truck for a ride home. Less than 5 minutes later- I was having a rough time breathing. He took me to er and my wife met us there.
CT scan showed a lot of clots on the inlet to each lung. My heart was enlarged due to blood flow restriction.
A few hours later I was in a radiological Cath lab. They took a handful and a half of clots out. A few were attached and had to remain.
I started Eliquis and referred to a Hematologist. I have factor 5 Leiden and am told I’ll be on blood thinners the rest of my life.
A couple weeks later- I was having severe pain in my back just below the scapula, it was bad enough that I threw up and was debilitated. Another urgent trip to er. Diagnosis was “reperfusion syndrome”.
The only thing I notice is fatigue about an hour after taking Eliquis.
Has anyone else had the reperfusion??

Thanks 🙏

Had chest pains and breathlessness on 13/6 but thought it was viral & anxiety. Had been on holiday but only short haul flights and no sign of DVT anywhere.
A&E found blood clot in lungs on 16/6 evening so I’ve been referred to “the blood clot clinic” they said it would be about 2 weeks. It’s been about 2.5 weeks now and I still haven’t heard anything, and while a few extra days isn’t concerning, I’m wondering what I’m supposed to do while waiting because nothing was really explained to me and I feel like I’m relying on Google and Reddit to see if my symptoms are normal. I’m assuming my GP isn’t qualified to help? Getting a taxi to my local A&E will cost £40 for the round trip and it doesn’t seem worthwhile contacting 999 for. But I’m really paranoid about that now because that was my thinking when I first had the PE and it took me 48 hours of chest pains and breathlessness before I bothered to call 999

During the first week of treatment, when I was on a double dose of Apixaban, I seemed to start feeling much better really quickly. Admittedly I was resting a lot though, but the chest pains had mostly cleared up. Since then though I feel like everything has been getting worse. The initial chest pains were centre-left of my chest but now I’m getting sharp pains on my right side. Not excruciating, and im guessing that it’s inflammation, but I didn’t seem to have inflammation there before. There isn’t a change in my resting heart or respiratory rates but I feel like I have less stamina than I did just over a week ago.

ETA: Made the mistake of calling 111 so now I have to attend A&E within the hour because I have chest pains, despite having a condition where chest pains are normal.