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sudden shortness of breath? concerned about PE?


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3 nights ago I went to the ER again because my heart rate was 150+ just sitting and I had a blood pressure of 170/150 which is the highest I've seen both values at rest I think. After laying flat for a while it came down to 130 then 110 or so (but it still shoots up on standing) They did blood tests (all were okay with the exception of the d-dimer (clotting test) which came back slightly elevated.

At first they injected me with 1 dose of heparin and told me they were going to do a lung CT as my HR was still high, I was feeling very dizzy and quite short of breath. Then yesterday my shortness of breath grew worse after 2 nights of staying in the hospital. The cardiologist came in and told me they'd decided NOT to do a CT scan because I had one a couple weeks ago and he was concerned about radiation doses (I didn't even need that recent scan because I was not having breathing difficulties at that time! but the ER doctor wanted it done!) and I was upset as my shortness of breath had grown a lot worse. I told him I was worried about a clot in the lung. He didn't seem concerned and told me I could go home. I asked another junior doctor on the ward if there was a possibility of getting a CT but they said the same thing about the risks. Isn't the risk of pulmonary embolism more urgent though!!!

I am out of breath just walking to the bathroom. I had an ECG and echo yesterday which came back okay besides sinus tachycardia. But I'm so anxious about the possibility that I have a clot in my lungs. I am still feeling unwell and am considering going back to the ER today but I expect the doctor will again refuse another lung CT scan due to the fact I'm in my 20's. I do understand that CTs can cause cancer and I am young which increases my susceptibility to radiation doses. But I've never had shortness of breath like this before and am very scared. Walking around slowly is leaving me gasping. I do not currently have any chest pain (though a lot of PE sufferers said they had no chest pain) but I feel on the verge of passing out and I keep experiencing hypnic jerks and gasping for air as I'm falling asleep. I don't really have any risk factors besides that 3 day hospital stay where I was mostly bedridden and it was 2 days into my stay that the feeling like I can't breathe worsened. Deep breathing and relaxation technique isn't helping. I am in bed on the verge of tears and I feel so weak and tired despite sleeping 10 hours.

I am extremely anxious about the possibility of a blood clot and feel like no doctor is listening to me due to my prior ER visits and history of anxiety. I don't know what to do. I regret that ER visit for chest pain a couple weeks ago because if that doctor hadn't ordered a chest CT I could have had one yesterday for my actual worrisome and noticeable shortness of breath. Has anybody here had experience with PE? I know doctors usually know what they're doing but the possibility of PE scares me as they are notoriously difficult to diagnose.

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Are you able to get a full satisfying breath? I ask because that sounds like me when I first got sick. See if your regular doctor will refer you to a pulmonologist. Are they giving you inhalers or breathing treatments? Those made me feel worse because they upped my HR. Try to relax and wait to see the pulmonologist before you freak out too much. Your elevated d-dimer may not have been but a few points which is why they aren't worried. If it keeps up keep going back to the ER every few days or so. But relaxing is going to help the most. 

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Thanks for your reply. I am just concerned because shortness of breath is definitely not normal for me. I am not asthmatic or anything like that. Even when my HR is in the 150s and I'm walking around, I still never felt this short of breath before. I would like to see a pulmonologist but a referral will take months and this has come on suddenly so that's why I'm so worried. I am okay laying flat but as soon as I even sit up I feel the air hunger. My breathing is faster than usual too. I have a history of hyperventilation but usually slow breathing fixes any tingling in my hands. The tingling was continuing even when I was doing that 7/11 breathing. I think I will head back up to the ER but I'm sure they think I'm faking all my symptoms. And I expect I'll get the same answer in regards to having another CT. I'm still much dizzier than usual and weak. I keep panicking which is making it worse. I'm trying to take my mind off things but it's so hard when I feel like I'm suffocating. 

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Dysautonomia symptoms change sometimes and if it is positional it definitely seems like it could be a POTS related symptom  You doctors can advise best.  It seems they did take you seriously if they kept you overnight for 2 nights.   I agree with the other post - it would be best to try to investigate this through your doctor.  If it avoids a trip to the ER maybe the referral could be expedited.  Also your doctor could investigate other causes besides the blood clot.

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If you every find the reasoning please post it. I am 3 1/2 years of "air hunger" that is varying intensities and no answer. I have learned to deal with it but the first year and a half was really rough. My shortness of breath doesn't bother me much anymore as long as I don't fight it or do multiple things that involve breathing. Like walking, talking, and smoking at the same time. I can do one, sometimes 2 and mine is tolerable. If it gets really bad and I start hyperventilating from fighting to get a deep breath (I don't feel like I am but my fingers/ nose will go numb) then I just go to sleep. I wake up and it is usually at a better level. 

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You are lucky the doctor did not give you another CT scan so close together. Your body hasn't had enough time to heal itself from the last exposure. I had two extra CT scans and one VQ scan that was not needed and I regret getting all of that radiation now. I refuse all CT scans now. I had huge clots in my lungs and had no pain in my lungs either. There really is no way to completely know without a CT, but most people who are about to die from PE's have extremely low blood pressure. With the BP and high HR, it could mean that you have a PE big enough to cause right sided heart strain. They can see that on an echocardiogram and sometimes on an EKG. If you are really concerned it is a PE, have them do a transthoracic echocardiogram. If your heart is not dilated, it is not a PE causing the high HR and other issues. Also, a D-Dimer test is not always specific for clots. Having an infection can cause a slight rise in D-Dimer. If you had a huge increase in D-Dimer, then they would have a high suspicion of a PE. I am not a doctor, but that is all I know about blood clots. Did they give you any anti-coagulant therapy to take for a few months just to be sure. That would be the best course of action to take. If you still feel unwell, get back to the ER. There is also a VQ scan they can perform that only uses 1/3d the amount of radiation that a CT Pulmonary Angiography uses. They can still test you and rule in or out blood clots. I hope you're feeling better. 

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Do you gag and grasp for air when climbing stairs? Climb the stairs really fast and see if you gag and gasp for air. That is the only symptom I had for my PE's at the time. I just considered it being out of shape. I have been having high HR too lately and BP because I stopped using my Clonidine. This is due to being in the hospital having surgery and since I am out of work for a month and barely standing, no need to treat the orthostatic hypertension and I will not use the Clonidine until I go back to work. It could just be a POTS flare too. I went to the ER a few times because of POTS also thinking the blood clots had returned and the CT scan showed clear lungs. 

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1 hour ago, blizzard2014 said:

Do you gag and grasp for air when climbing stairs? Climb the stairs really fast and see if you gag and gasp for air. That is the only symptom I had for my PE's at the time. I just considered it being out of shape. I have been having high HR too lately and BP because I stopped using my Clonidine. This is due to being in the hospital having surgery and since I am out of work for a month and barely standing, no need to treat the orthostatic hypertension and I will not use the Clonidine until I go back to work. It could just be a POTS flare too. I went to the ER a few times because of POTS also thinking the blood clots had returned and the CT scan showed clear lungs. 

Your description is what I'm worried about. I know high heart rates will make you breathless but usually I can tolerate high heart rates pretty well without feeling too out of breath. But I currently feel winded just walking at a slowish pace. So it's weird. At this point I've consulted so many doctors and know none of them will order a CT. So what more can I do I guess? 

I'm sorry you went through such a horrible experience but you're very lucky it was found in time! Can I ask if your vitals (like your spO2 levels or BP) or your ECG at the hospital before your diagnosis showed any abnormalities? What was your PE heart rate versus your normal heart rate? The doctor told me my HR had gone back under 100 at rest so I shouldn't worry. I know most people are diagnosed with clots after the d dimer which if raised usually results in a scan. The doctor tried to reassure me that if my vitals and ECG were normal they didn't need any further investigation. I'm trying to trust my doctors. 

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3 hours ago, StayAtHomeMom said:

If you every find the reasoning please post it. I am 3 1/2 years of "air hunger" that is varying intensities and no answer. I have learned to deal with it but the first year and a half was really rough. My shortness of breath doesn't bother me much anymore as long as I don't fight it or do multiple things that involve breathing. Like walking, talking, and smoking at the same time. I can do one, sometimes 2 and mine is tolerable. If it gets really bad and I start hyperventilating from fighting to get a deep breath (I don't feel like I am but my fingers/ nose will go numb) then I just go to sleep. I wake up and it is usually at a better level.

I'm not sure. The doctor said that if my heart rate is going that high (mine is currently at 130-140 standing and at the hospital it actually went up to 193 or something) with such minimal extertion it's like running for other people, so it's no wonder I'm feeling breathless. I am also trying to ignore it and I do feel better in the mornings. It's after eating or being on my feet too long I feel terrible. And yes talking also leaves me breathless!

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1 hour ago, blizzard2014 said:

You are lucky the doctor did not give you another CT scan so close together. Your body hasn't had enough time to heal itself from the last exposure. I had two extra CT scans and one VQ scan that was not needed and I regret getting all of that radiation now. I refuse all CT scans now. I had huge clots in my lungs and had no pain in my lungs either. There really is no way to completely know without a CT, but most people who are about to die from PE's have extremely low blood pressure. With the BP and high HR, it could mean that you have a PE big enough to cause right sided heart strain. They can see that on an echocardiogram and sometimes on an EKG. If you are really concerned it is a PE, have them do a transthoracic echocardiogram. If your heart is not dilated, it is not a PE causing the high HR and other issues. Also, a D-Dimer test is not always specific for clots. Having an infection can cause a slight rise in D-Dimer. If you had a huge increase in D-Dimer, then they would have a high suspicion of a PE. I am not a doctor, but that is all I know about blood clots. Did they give you any anti-coagulant therapy to take for a few months just to be sure. That would be the best course of action to take. If you still feel unwell, get back to the ER. There is also a VQ scan they can perform that only uses 1/3d the amount of radiation that a CT Pulmonary Angiography uses. They can still test you and rule in or out blood clots. I hope you're feeling better. 

Thanks for providing all this info. I've read up quite a lot on PEs and recognise a lot of what you're saying. I don't think they'd even consider such extensive precautionary anticoagulant therapy. I was given one dose of heparin at the hospital when they said I'd be getting a CT, but the second doctor immediately cessated heparin treatment and cancelled the possibility of CT. 

I know CTs are a LOT of radiation for the body to cope with. It's just upsetting and frustrating how the doctor from weeks ago ordered a CT that I didn't even need/want. I know he was doing what he thought was best but I thought it was a little OTT at the time as my bloods were fine and my d dimer was only like 280. cut-off is 240. before the initial scan I actually said to him 'if it was a clot wouldn't my d dimer be a lot higher?' to which he seemed annoyed and said 'not necessarily'. long story short that initial CT scan that I guessed would end up showing nothing ended up showing nothing. and now that I'm much more symptomatic and would actually LIKE a scan to check for PE every doctor is telling me to get lost! I was hoping they could do another less radiation-intense test like you said. But the doctors just aren't interested at this point. 

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2 hours ago, peachychou123 said:

Your description is what I'm worried about. I know high heart rates will make you breathless but usually I can tolerate high heart rates pretty well without feeling too out of breath. But I currently feel winded just walking at a slowish pace. So it's weird. At this point I've consulted so many doctors and know none of them will order a CT. So what more can I do I guess? 

I'm sorry you went through such a horrible experience but you're very lucky it was found in time! Can I ask if your vitals (like your spO2 levels or BP) or your ECG at the hospital before your diagnosis showed any abnormalities? What was your PE heart rate versus your normal heart rate? The doctor told me my HR had gone back under 100 at rest so I shouldn't worry. I know most people are diagnosed with clots after the d dimer which if raised usually results in a scan. The doctor tried to reassure me that if my vitals and ECG were normal they didn't need any further investigation. I'm trying to trust my doctors. 

I had a normal HR, normal spo2, and normal blood pressure. All normal and I had an enlarged heart and bilateral clots in both lungs, filling every lobe. I was already admitted to the hospital because I couldn't walk due to an extensive DVT in my right leg. They didn't have to work very hard to figure out it was a DVT. They knew within 15 minutes of having my leg ultrasound. The next day I said that maybe sometimes I have shortness of breath and the doc heard decreased breath sounds in my lungs. They sent me for a CT scan and then saw the huge clots and rushed me from the regular hospital room to the ICU/Telemetry ward. They couldn't believe that I had that big of a clot and I was not in any distress vital sign wise. I guess that is a good predictor of outcome. Those who walk into the ER and still have good vitals survive better than those who come in by ambulance already in bad shape. Is there any way to get yourself to a new ER, somewhere they do not know who you are. Sometimes it is a PE and doctors misdiagnose people for months until it becomes deadly. I also know for a fact I had clots in my lungs two times in my life that were untreated. I remember struggling to breath back in 2005 just walking and talking to my teacher. In 2009, I had the same gagging and coughing while climbing the stairs that I did in 2012 when I was diagnosed with my first PE. I think I somehow survived the other clots. So, it is a crap shoot really as to what happens. If you can get to another emergency room, I would do so. 

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I had my first PE in May and a second about a month ago. Mine have been caught during admissions for severe anemia (hemoglobin 5.1 and 5.8) and so differentiating between blood loss and PE symptoms has been difficult. Since I've had many more instances of blood loss over the last 6 months I can identify some of the symptoms now. With the first PE my heart rate would not come down, even after transfusion, my blood pressure stayed pretty labile as well. The biggest signs we're they had me on 4l of oxygen because my sats kept dropping, I couldn't say 3 words without taking a breath, and I couldn't breathe deep AT ALL. The PE did not show up on X Ray as it was small so only found on day 4 of admission when they did a CTA at the behest of infectious disease, I was having fevers of unknown origin as well. On the CTA they did see that my heart was enlarged and the radiologist identified possible heart failure. I was told this was because of the PE. 

My second PE was found simply because an ER dr wasn't willing to let my symptoms slide as purely the anemia, due to the fact I had a history of PE and had stopped blood thinners 2 weeks prior. I had come in purely because I knew I was transfusion level anemic yet again... (I get chest pain, constant tachycardia, lower than my normal low BP, and SOB with hemoglobin below 7.) So the ER Dr ordered a CTA just to be sure and found I had formed 2 new clots in my right lung but this time my heart was not enlarged. To me I had little to no symptoms this go around, I probably would habe recognized them though if I wasn't also anemic. They did admit me to ICU because they wanted to treat PE with heparin but concerned bleeding would get out of hand, yet again... I started having "v tach"  in ICU which cardiologist said was because of the strain of PE AND anemia together was too much for my heart. Later they were debating if it was true Vtach or pacemaker induced, which ever it is, it resolves on its own so we don't have to worry about treating it. My cardiologist said that they do see this with PEs and more likely that's the driving factor although anemia doesn't help. 

I don't know if this is any help at all, it has been hard weeding through symptoms to know what's causing what... After initial CTAs we have not done repeats as I'm already on anti coagulation therapy so if i formed another clot we are essentially already treating it. Worthy of note is after the first PE i followed up with pulmanology who said what they saw was heart failure, not a PE, according to him. This was obviously disproved when I formed a 2nd clot just 2 weeks after stopping blood thinners. So I wouldn't say it's out of the realm of possibilities for them to miss a PE, if the circumstances are right. 

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11 hours ago, peachychou123 said:

I'm not sure. The doctor said that if my heart rate is going that high (mine is currently at 130-140 standing and at the hospital it actually went up to 193 or something) with such minimal extertion it's like running for other people, so it's no wonder I'm feeling breathless. I am also trying to ignore it and I do feel better in the mornings. It's after eating or being on my feet too long I feel terrible. And yes talking also leaves me breathless!

Yes that is how I am. I have always felt better in the morning and worse in the evenings. Originally I hesitated on POTS because it seems to be the other way around for most people. 

After you eat does your stomach feel bloated like it is pushing into your diaphragm making it harder to breathe?

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I'm sorry your feeling so sick. That is so disconcerting.

If your PE is not life threatening, then treating with anticoagulants and/or nattokynase is really all there is to do. The radiation from a CT scan is 100 times more than the recommended safe radiation exposure. Radiation does not dissipate with time. It stays with us forever so it is a big deal exposing yourself to more. When I had my first PE, they did the CT scan. The next week I either had a second PE or my dysautonomia began and I refused the CT scan because of the radiation risk...and it clearly wasn't a life threatening PE because I could walk and talk, albeit with difficulty. My heart rate went up to the 170s on standing and was 130 at rest. I was in the hospital for 3 days (the second time) and on IV heparin. I felt way better a few hours after starting the heparin which was, in hindsight, the big clue that it was dysautonomia...because it wasn't the heparin that made me feel better, it was the saline!

3 months later, I went to see my new cardiologist (Dr. Goldhaber at Brigham & Women's, the world's leading expert on clots) and he sent me to the ER because of the SOB was so bad (I told him that was normal for me...he said that's not normal!). I consented to do another CT scan and it was completely clear.  They sent me home and referred me to a pulmonologist and that (4 months later) led to the dysautonomia/POTS/small fiber neuropathy diagnosis.

So, I don't know if it's a PE or not. If you really want to get the CT scan to put your mind at ease, I agree with the other post; find a different hospital. Also, I am wondering if they can't do some kind of MRI for this? I don't know...

Also, I'm sure they checked you for clotting factors? And if you're in bed a lot, get your legs moving as much as you can to prevent more clots from inactivity. My PT told me to draw the alphabet in the air with my feet! I could only do a couple letters at a time back then but I guess every little bit helps. Let us know how it goes!

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Thank you guys so much for all your advice and support, for taking the time to reply in such detail, and for sharing your experiences. I am still extremely stressed and anxious, and still feeling lightheaded, breathless and tachy. I haven't had a d-dimer since this breathlessness started, so I went back to the ER. They did blood tests but didn't even do another d dimer even though I told them I was specifically worried about clots. Doctor was brusque and not interested. So no CT again. I'm still very symptomatic, stressed, anxious, and financially worse off thanks to the cab fare.

My grandfather is actually in hospital with a DVT, having a stubborn blood clot in his leg being operated on. He has been in an incredible amount of pain for weeks and the doctors took ages to diagnose DVT even though he was showing so many symptoms. It's possible this is what has triggered my fear of blood clots and fear of doctors misdiagnosing things. Looks like he won't be out until thursday. Even when I explained the family history, it feels like no doc is that interested. I am trying to reassure myself that my CT 10 days before this breathlessness started was normal. I'm really hoping this is just a POTS flare after all.

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Well as I was getting dressed for bed I noticed a bit of weird swelling in my leg today. Most people say their ankle or whole calf swelled up. Well, this swelling is weird, it's slightly bulgey, localized and near the surface in one patch. No pain, but there's a patch maybe 6cm long and 4cm wide, and less than 1cm raised, on the front of my left calf, that is swollen. It's hard to see from the front or just by looking, but when I look down at my legs, especially under a light, I can see the shadow where it's definitely raised. I have always had some pretty thick blue veins underneath that patch of skin, and to be honest my other leg has some mild cellulite & uneven fluid distribution too with some bumps and bulges, so I have no idea if it's just some pooling/fluid from eating lots of salt and being on my feet a lot today, or a sign of a clot. Either way I'm really worried. I'm so tired of running to the ER but I think I will need to get this checked out and make sure they run a d-dimer this time. I wonder what they can do as I've heard ultrasounds often miss DVT especially those in the thigh, pelvis, etc. A few weeks prior to this I was getting a lot of pain in my lower back/left hip. But my d dimer was only marginally elevated when this was going on (cut-off 240, mine was like 287) My anxiety is just through the roof atm :( 

At the same time I'm trying to remember that I have been having a lot of tachycardia and lightheadedness, feeling like I'm gonna faint multiple times a day, and just generally feeling awful since October 1st, and the good thing is I had a chest CAT scan that came back clear on October 20th (I started feeling short of breath on the 31st,  so technically my clear chest scan was done just 11 days before the shortness of breath started)...hmm. And the night BEFORE the shortness of breath started - Oct 30th - they'd actually given me a tummy shot of heparin as a precaution in the hospital. So I don't know what to think. The chances of developing a PE that timeframe, between the scan and right after the heparin dose, seems pretty slim. But I would hate to have something serious go undiagnosed. 3 different doctors have told me they don't think I have a clot, and that should be enough to calm me down, but my anxiety won't let my mind relax and now I'm hyperaware of every symptom. It's maddening. I have a box of low dose valium in my cupboard and I'm tempted to pop a pill or two but I know it's just going to make me even more dizzy lol. 

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This issue really needs to be evaluated by a physician. A DVT normally causes swelling that is not limited to an area but rather causes swelling of a part of the limb, as well as heat and redness. But to make sure you need to have it examined by a medical professional. 

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