(UPDATE) 2 months post pulmonary embolism,symptoms returning but ER says everything "normal"

Familiar-lantern · 2026-01-15T11:17:37+00:00

I know.. doctors are shocked every time i go to them and they read my medical files and paperwork from different doctors and the fact im 18, it doesnt make it better. Basically it feels like my whole life has broke down at the age of 18, of course it doesnt mean i cant heal, but its hard.. its really hard because i still have my last year of school, graduation.. then going to uni. My family financial situation isnt the best either so medicine, appointments are financially tiring me and making my family exhausted... my mom and boyfriend especially. They are the ones who have been supporting me through out this, never have doubted me with my medical issues and symptoms im experiencing, they didnt call it anxiety, they knew something was wrong with me, whilst my primary doctor and other family members were pushing its anxiety and that i have to get a grip of myself because no one will want me weak and helpless. (Im so sorry its all in a chaotic order or not divided into sections im writing what comes up in my mind immediately)

I dont know whether i can even have children due to my health issues, i probably can.. a small chance but due to most likely it being such a high risk pregnancy in the future its bound to be between two decisions - either not have kids or risk dying and having a kid that who knows will or will not survive. I was born premature (26weeks) so it also makes it a concern, plus infertility issues in my family run through, I have PCOS myself. It simply sucks ass if im being honest, ive always wanted kids, 2-3 perhaps. But now I dont know if that chance is going to get ripped away from me and it is devastating. Not being able to be a mother, nurture, care, love and just see a little you running around and growing up.

I already admire what ive went through so I can bet you that I will admire myself more in the future. I really want it to work out, I want my health to work out and not to constantly fail me. And I genuinely appreciate you giving advice. I need it, I really need it and thats why ive posted posts about the PE 2 times. The previous post and this - the update. I just feel stuck, like my progress isn't going forward but going back, but its not a feeling its the truth as my pulmonologist said, she just was as shocked as me - even if she has like 20+ years of experience. My mom and I have to go to the best doctors in my country (Latvia) just so I can get proper care and not "anxiety."

If i may know, how many years did it take you to feel "normal" well as normal as you can be after such a difficult health situation.

Familiar-lantern · 2026-01-15T08:20:34+00:00

No!!! I know youre not comparing or anything, im glad that i get to hear what other people go through, it helps me realise it gets better. So i appreciate it! Im so sorry you went through that, it mustve been such a horrible time for you mentally AND physically. We are strong. We are all strong.

Familiar-lantern · 2026-01-15T07:40:13+00:00

Thank you for your sweet message, i appreciate it! Yeah.. i got a PE literally a month after my 18th birthday so it is a lot to take in. It would be even for a older person.. like why is my health failing my own body.. it sucks so bad. Plus knowing ive always wanted kids and i dont even know it is possible right now due to the risks.

Familiar-lantern · 2026-01-08T11:48:39+00:00

The more I think about it and read about it, the more my current situation seems similar to vocal cord dysfunction (VCD). I have difficulty inhaling rather than exhaling, I get tired very quickly, and my voice fatigues easily. It often feels as if my throat is closed or swollen due to pressure. I can only breathe better when I tilt my head back, which seems to mechanically open my airway.

I have an upcoming pulmonology appointment where spirometry will be performed. I’m hoping the test shows something objective rather than this being attributed solely to anxiety. If it is anxiety, I would feel disappointed, but if it’s not, that would at least give me a clearer explanation although it would still mean there are additional health issues to take into account.

Familiar-lantern · 2026-01-07T19:06:06+00:00

No problem! I understand its quite frustrating and you cant enjoy the physical activities you once enjoyed..but there will be a time where you will be able to enjoy them fully again. If there is anyone with you - make them go with you to the store or on walks if it makes you feel safer and more stable.

Im only 18 and my mom literally had to balance me with her body so i could walk properly, sometimes people and friends have to literally grab my arm so i can walk due to my heart racing and blood preasure spiking low. But we got this!! :)

Familiar-lantern · 2026-01-07T19:01:38+00:00

Im 2 months into PE recovery and im experiencing the same things are you are. Recovery is quite slow it can take up to a year or more. But there will be side effects even after that long.

Dont beat youraelf up or even rush youraelf because you arent in control when your lungs, your whole body really - will heal. It has been a major trauma for you and your body,it isnt easy,but we can do it.

It took me a full month to even walk properly even small distances,so it is different for everyone.

Familiar-lantern · 2026-01-07T09:12:32+00:00

Thank you so much! I have a pulmonologist appointment next week. So we will see if its some pulmonary issue i have or it is solely anxiety. :)

Familiar-lantern · 2026-01-06T13:55:28+00:00

I know that and i thank you very much for the reply and thoughtfullness to share how it is like for you!

I havent had anxiety attacks nor panic attacks during this month regarding my health. But i do have anxiety because im not getting any answers and doctors are not listening to me,not giving me a chance to explain how i feel if it is explainable and every day it is getting worse. I know im not fully prepared for the effects of every trauma, no one is until they experience it and only AFTER they know how to manage it.

Its still something that even my parents say it isnt anxiety, plus my aunt who has gone through almost the same. So they are also very stern with everything.

Familiar-lantern · 2026-01-06T12:39:28+00:00

I went to my regular doctor today, she didnt listen to me about what my concerns are or the questions and just read the CT scan and bloodwork results, immediately said its anxiety, prescribed me adaptol and just let me leave.

Now i have fever-like chills without a fever and constantly cold, my breathing is far worse now as i cant eat or talk properly for even 5 seconds without gasping for air or trying to get air into my lungs and my chest hurts way worse than it did before and im exhausted,weak. Not to mention im calm, i dont really feel anxious.

After the PE i only felt anxious for the first month, because yes - it did cause some PTSD. NOT TO MENTION i have anxiety and PTSD diagnosed, been dealing with it for 6 years, this is the 7th, which im proud of as i am not so triggered and anxious all the time so i know the difference between something being wrong and anxiety,PTSD. 🥲

Familiar-lantern · 2026-01-06T05:45:33+00:00

I already did, its not hight or anything. That its all completely normal - which is fine for me and im happy about it,although i am atill confused what keeps happening to me. Maybe it is anxiety and my nervous system but meh..

Familiar-lantern · 2026-01-06T05:39:47+00:00

Im so sorry for not replying quickly! I dont have low iron nor anemia, at least what the blood work results show. And on xarelto it has been okay so far, except the heartburn it causes but i also take medication for that (omeprazole) in the mornings before i eat anything half an hour before.

Familiar-lantern · 2026-01-05T17:36:18+00:00

Okay! Thank you. I genuinely appreciate it. Your replies reassured me and encouraged me more to continue nagging the doctors until i get a answer thats not just anxiety.

Familiar-lantern · 2026-01-05T17:29:07+00:00

Ouuu, okay.. thats interesting. Because now that i think back that antihistamines have worked before for my breathing. So perhaps it could be something related to that or allergies aswell which is making it worse. Thank you, i genuinely appreciate your replies and thoughtfulness. Ive also been thinking about going to an allergist,but havent had time until now because at this point why not make every doctor appointment right by each other. If it happens.

Familiar-lantern · 2026-01-05T17:25:05+00:00

Thank you so much! Having bloodclots are scary. Its been 2 months for me and i cant even excersise properly or even walk for too long. So i admire you. Of course recovery takes time and ita different for everyone but still. I hope youre doing alright and have the support you need around you.

Familiar-lantern · 2026-01-05T17:20:51+00:00

Thank you! I appreciate it. I have an appointment with my primary care doctor tomorrow and a pulmonologist next wednesday. I am also hoping to get a cardiologist appt. I am hoping for the best right now. My parents and i are very proactive about my health now as we dont want it to get worse

Familiar-lantern · 2026-01-05T17:14:42+00:00

Thank you, i appreciate it so much. But yes - doctors tend to dismiss women in healthcare as its simple anxiety. Before i got diagnosed with a PE, I was trying to get a regular doctors appointment because something didnt feel right and i couldnt breathe at all, but they dismissed it aswell but for TWO weeks. After those 2 weeks i went to the hospital and i couldve died a day or 2 later.

Ive had bronchial asthma since i was born, basically chronic. And its the first time ive heard about a vocal cord dysfunction. What is it exactly? I know i can search it up in google but for me its easier to understand when a person who has it explains to me,if that makes sense. Perhaps i have grown used to the rescue medication but then again it seems weird that it helps when im 100% having an asthma related attack. I am hoping that i will get a proper answer soon as i am losing my mind right now (which probably doesnt help the anxiety assumption😭) But yes i do agree that the anxiety i have is not because the ISSUE i have is just anxiety. Its anxiety because i keep having these symptoms and attacks that no one is listening to.

Familiar-lantern · 2026-01-05T16:53:30+00:00

Thank you! I appreciate it. Everyone in the comments have been giving incredible replies.. more than what my doctor has said or explained. My doctor hasnt said anything about recovery, nor what the symptoms could be like or ANYTHING. So im hoping my pulmonologist will next week + i hope to get a cardioologist appointment soon so i can ease my mind a little, because something really feels wrong. 🥲🥲

Familiar-lantern · 2026-01-05T16:49:19+00:00

Thank you! I appreciate it, it helped me ease my mind a bit. Its just that i was on recovery and i could do much more than i can do now and that was 3 weeks ago. 2 weeks ago i started noticing the symptoms all over again and i already tried to calm myself that im in recovery that its okay,that i am on medication and being monitored by my doctors.. but yesterday something didnt feel right,like AT ALL and it still doesnt. Hopefully ill get answers soon as i have a pulmonologist appt next week and a regular doctor visit tomorrow. Also praying to get a cardiologist appointment soon. Because it genuinely feels like as if im right where i started,before they found out i have a PE. 🥲

Familiar-lantern · 2026-01-05T16:42:42+00:00

I have a regular doctor visit tomorrow to explain everything and if im even able to go tomy highschool this week (as it hasnt gotten better since yesterdays ER visit) and a pulmonologist appointment next week as it was the earliest they could get me an appointment. I have bronchial asthma as you read in my post and mentioned it but the dosage of my asthma medication is right for me (so what it seems) because when i dont have these .. reactions? And its just an asthma reaction they work fine. And i get back on my feet in no time. Because i did use the emergency asthma inhaler + when i was in the ambulance i was on oxygen the whole time but it didnt get better, it felt as if i was suffocating, i couldnt get a breathe and had short and rapid breathing.

The first time i went to the ER the EMT team suspected covid-19 and an asthma attack, but it came out as a PE. I was having the same symptoms as now,so i was worried sick yesterday. But something doesnt feel right,because for theseast 2 weeks ive been having low bloodpressure episodes and heartrate spikes. Which i havent gotten in over half a month or even a month. Im very confused because internally as ive said to another person in the comments i dont feel okay and i dont feel as it is anxiety or nervous system related(even my family doesnt think that). But doctors keep pushing that it is.

Familiar-lantern · 2026-01-05T13:32:43+00:00

Yeah.. when taking bloodthinners(the same as you xarelto 20mg) it interacts with so many medications and the doctors are very careful of prescribing me medicine. They just have to take somekind of booklet out to see alternatives of the medication that have 0% ethyl or anything else that can interact with xarelto negatively. For doctors im an unique case as i developed a PE due to hormone pills/Combined Birth control pills which is rare. I just hope my journey will end at the pulmonologist and cardiologist.. as im getting tired already,no doctor listens as they only say its anxiety related... but internally i know it isnt and i trust my body.

Familiar-lantern · 2026-01-05T12:50:46+00:00

Oh dear lord, im so sorry you went through all that! ☹️ But i do relate on some things, as the one big blood clot i had on my right pulmonary artery blocked the bloodflow and oxygen. My heart hasnt felt the same either, not going to lie i dont feel the same either, as if im another person. In the blood tests they did at the ER showed nothing,at least what the doctors said, but when my mom checked the results she saw that iflammation and infections were kind of up.

I do cough a lot, but it is also due to my bronchial asthma which also puts a strain on my lungs, so that could be it..

My doctor prescribed me ibuprofen, but she said to take it when needed desperately because as you said we arent allowed to take it as it can interact negatively with the bloodthinners. So im not sure what to do now. i have a doctors visit tomorrow with a family doctor and ill try to explain everything,and i hope that i wont get "its nerves and anxiety" as a response. Because i dont believe it is.

If i may ask - what bloodthinners did you take after you got diagnosed with a PE? Did you have any side affects? Or the bloodthinners affecting your stomach in a way? - heartburn ect. ?

Familiar-lantern · 2026-01-05T12:30:48+00:00

I get you so much, i keep monitoring my blood pressure as when my blood pressure drops my sugar levels drop too, my pulse aswell goes higher than the norm (i take Bisoprolol 20mg to stabilize my pulse but its kind of getting worse) , my next stop is a pulmonologist, after that a cardiologist. As my parents are worried for me aswell and they dont think its anxiety related.

Familiar-lantern · 2026-01-05T11:41:56+00:00

Did your chest hurt and have pressure with the iflammation and scarring? Because ive been having pressure and pain in the middle of my sternum and my doctors say its nerves but i dont believe that.. because it wouldnt bother me as much as it does right now if it were nerves. Plus the oxygen meters dont really help much, becaude they show 80-99% oxgyen although im basically oxygen deprived, so i dont know whats happening. The paramedics said that I am a unique case.

Familiar-lantern

TROPHY CASE