New PE diagnosis with anxiety

[Brookiebiceps]

Dx with bilateral pe's and one in inferior vena cava. I'm on xarelto for 2.5 weeks so far but may need it long term/life. I'm 40, 5 kids, unsure why/how I hot them but some people in my family has had them. I get headaches, nausea and my period is due any day and I'm scared! Anyone else live in constant anxiety? Scared to sleep, focusing on every pain, headaches, breath? I have never been so anxious! Being on meds long term scare me as well. I pray often and try not to focus on this but thats all I do! I Google, read forums, YouTube etc. Anyone?

[GillyA]

Hi, I too had a diagnosis completely out of the blue. For me it was a CVST (clot in the brain). I agree I went through a few weeks when life was awful. Not helped by this happening when I was on my own in lockdown.

Three months on, I’m stable on thinners. The clot is still there, but not growing or moving. I’ve firmly decided that the best thing I can do is get on with my life. It’s certainly not been easy, but I came to the conclusion that the alternative was to wrap myself in cotton wool and worry about something which may never happen.

I think you need to understand you are effectively going through a grief cycle. It’s fine to be upset, worried and to morn. In the end though you start to move on, get used to the situation and start to adjust.

Life will get better again.

[Brookiebiceps in reply to GillyA]

Thank u for your kind words. I have a mind full of "what if's" my heart rate goes up and my body feels so weak some days.. what thinners are u on?

[GillyA in reply to Brookiebiceps]

I’m on warfarin, which means I’ve got to be careful about what I eat and drink and have to test regularly. Unfortunately they decided the newer drugs weren’t appropriate for me. But I’ve actually coped better than I expected.

I did do a couple of sessions with a therapist to talk about my worries and not have to guard myself in the way you do with friends or family. Having structured conversations with an outsider definitely helped, but my sister was great too.

I’ve also ‘put my affairs in order’ a will, power of attorney. Surprisingly, while I hated doing it, it’s also helped. I know if something does go wrong I won’t leave the mess to sort out that it would have been otherwise.

[Bloodredroses in reply to GillyA]

It seems to take time for these clots to break down. At least the thinners control them , and at least you know about it. Probably not good to play rugby 🏉 lol yes living life seeing positives reduces their “power “ that’s for sure .

[Hidden]

It is horrible when this happens, especially unexpectedly. I had multiple bilateral PEs diagnosed quite out of the blue 3 1/2 years ago, and yes, the anxiety is horrendous. Every twinge..... and it's been worse since I had Covid-19 and, although I didn't have pneumonia, have been left with constant slight chest pain and occasional nasty ones - I've to have a CT scan asap, had the blood test for it today.

Yes, we all suffer dreadfully from anxiety, but you will find, as time goes on and your body gets used to rivaroxaban, life gradually returns to normal. You may suffer side-effects - if you can live with them, do so, but report them to your haematologist anyway, and if they are severe, ring up the clinic at once. But there is life after PEs....

[Brookiebiceps in reply to Hidden]

Hi, how old ru? Are u still on thinners? It's hard thinking so critical all of the time! I only been on meds since 8/31/20. I keep asking myself is it working??? I hope I get used to it with no real side effects.. my appetite is slightly increasing. Ty for responding. I hope you are well and recovering from covid!

[Hidden in reply to Brookiebiceps]

I'm probably a great deal older than you, as I'm nearer 70 than 60, alas! So at least I don't' have periods to worry about, or, indeed prescription charges. And yes, unless my most recent blood test shows any contra-indications, I'll probably be on thinners the rest of my life, as they said my clots were unprovoked. Actually, they were caused by a chest infection I didn't even know I had, but they still qualify as unprovoked.

[Brookiebiceps in reply to Hidden]

I'm 40, I had some issues with adrenaline rushes and high heart rate in July, they did a ct scan which showed NO CLOTS. I felt short of breath late August and had CLOTS!? I still get chest pain and short of breath. I know I need to give it time but I even get scared to sleep!

[Bloodredroses in reply to Brookiebiceps]

Must sleep ! Discuss with g p . Less sleep more anxiety .

[Suebo2 Moderator]

I’m sorry to hear that you are so anxious, but not surprised at all it is very common so I hope that it helps to know that you are not alone in this. It’s a good idea to speak to a therapist - many do, and benefit from it.

I would imagine that you are on rivaroxaban for life as no clear cause for your clots.

Thrombosis UK is a patient friendly website so you may find some help there?

You have many things to be thankful for, but also, you don’t have to take warfarin, but have a simple daily tablet with very few blood tests.

It is a worrying time, but as the others have said, things will get better. With 5 children I don’t suppose that you get much rest, but give yourself some ‘ me time’.

Take care

[Brookiebiceps in reply to Suebo2]

Thank you. I also just started my menstrual cycle and bleeding really heavy! I just want to know my clots are going away! I'm on week 3 of xarelto. I never had to take daily meds so this is upsetting for me.

[Suebo2 Moderator in reply to Brookiebiceps]

I know that one of the local Haematologist’s finds apixaban causes less menstrual bleeding in her experience. However, your dose will be reduced to 20mg once a day from now on so bleeding might getter better?

[Brookiebiceps in reply to Suebo2]

I hope so. I just bought iron today. When did u guys start to feel better? I know it's only been 3 weeks, am I rushing it? In just drained and I get headaches and cloudy brain! and still get intermittent chest pains. I'm currently wearing a cariac monitor as well! Gid give us all strength!

[Brookiebiceps in reply to Brookiebiceps]

God!

[ankaluna]

I’m not certain how much I can help you because I was in my early 70s when I got my PE. No one in my family had a history of PEs and through many blood tests after I was stabilized, no reason was found for the PE. Even at my stage of life, I didn’t want to be on meds forever. I tried to convince the doctors to drop the prescription, but finally realized that it was best to remain on Xarelto because of the damage to my lungs and heart sustained during the PE. I ended up with atrial fibrillation and sleep apnea which also needed to be addressed. The AFib is now under control and so is the sleep apnea. Were it not for my dog wanting her regular walk that afternoon, I would have slept my life away and died during the night. As tough as it is dealing with your kids, your young age and the prospect of being on the drug the rest of your life, try to remember that many people die during their first PE episode. I found out about 85% of people with my type of PE die immediately. That sobered me up right away. You’ve been given a second chance at life. Enjoy each precious extra day you have been given. I sincerely hope my words may help you.

[Brookiebiceps]

Thank you.. and may God bless you 🙏

[KaySid]

Hi! I’m 35, had an emergency PE last year whilst on labour with my second child. Got into cardiac arrest and woke up 2 weeks later in ICU, saw my baby for the first time after 12 days!

Discharged a week later and put on Xarelto for life. My risk factor was pregnancy so haven’t got around to seeing a hematologist. I have been put on Mirena so that has eased the bleeding a great lot. Before i had the Mirena insert i had to take iron supplements daily.

Not sure I have any particular side effects from Xarelto, you get used to taking it daily (you even get used to the panic attacks when you miss a dose). I’m an expert at reading medication labels now, so I can watch out for any slight Asprin or Ibuprofen!

12 months later i also still a bit worried sometimes, it’s gotten better though. At the beginning, i was just like you- couldn’t sleep, always worried about my breathing, was in the emergency room so many times because “my chest felt tight”.

It’s going to be ok dear. Keep the faith.

My doctor advised me that “there must be a reason you came back (from death); find your purpose and live”.

[Brookiebiceps in reply to KaySid]

Kay, thank u and God bless u! I'm not quite sure what caused mine but there is some family history. It's been 3 weeks for me on xarelto.. I just feel weak. I'm hoping my body adjust with no real side effects. I'm 40 with 5 kiddies.. thank u for the advice💜

[MillaZ]

I was on Xarelto for around a year and a half after a massive PE caused by a fibroid tumor in my womb. I was told I would be on Xarelto (and 3 other medications) for life, also because it was discovered during tests that I have a genetic fault in my heart, a patent foramen ovale, PFO.

That caused me a huge amount of axienty -not the tablets themselves, but the fact that I would be on medication for the rest of my life. Me, I had never even taken an aspirin before! I just could not imagine living with having to take tablets 4 times a day, and with the terrible side effects.

But things improved after a few weeks. I am lucky that I live in the mountains and I had the possibility of taking long walks in the woods, and this helped me immensely. You cannot imagine how good it was for me all the walking I did, especially mentally. Basically, forest walking is what saved my mental health.

I am a lot better now. I have resigned myself to the fact that I am on 2 medications for the rest of my life and I am OK with that. I try to live the best life I can: working, looking after family, doing things for myself like walking and reading. In the end, it is the only thing one can do.

[Brookiebiceps in reply to MillaZ]

Your not on thinners anymore?

[MillaZ in reply to Brookiebiceps]

I am not, currently. It took more than a year to resolve the PE completely. It was probably the problem in the womb that caused the massive PE and the ischemic blood clot -we solved both with surgery. After the surgeries and the 18 months of Xarelto, I did a million tests to see if I have any type of blood clotting disorders and the tests all came back negative so ,together with the doctor who was looking after me, we decided I should come off Xarelto.

I am 48 this year. I am so grateful to have reached this age! 2 years ago I wasn't even sure I would last until 47.

Be strong and be hopeful <3

[Bloodredroses in reply to MillaZ]

Brook mills had s reason for the clot , if unprovoked - no apparent reason , can happen again anytime , so life time . Take it for the period the haematologist advises , they is what they do , study blood , learn to trust them , not your anxiety . OK?

[Brookiebiceps in reply to Bloodredroses]

She said 3 months on 20mg.. then life on 10mg.. it's all so nerve racking. I have been praying and deep breathing for my anxiety.. it helps.. keep me uodated..

[Brookiebiceps]

Thank u, glad u e feeling better.. stay blessed

[Armyguy]

Hello! I am Josh 35, was Diagnosed at 33 with a PE in my right lung and they are not even sure how it happened, my factor V came back negative. I do have an Heart Arrhythmia issue called SVT where my heart can randomly take off to 250 BPM plus for no reason. When this first started, (Talking about SVT) I got to such a point I didn't even wanna leave the house, or go down unknown roads, or unfamiliar places because I wanted to know where I was at, at all times to call an Ambulance, I was afraid of everything, but then I realized that's absolutely not who I am. I snapped out of it and started living MY life again, not letting this clot or heart arrhythmia live it for me. You have to look in to CBT, Cognitive behavioral therapy, it really does help. TRUST ME. TRUST ME!!!!!! You have to change the way your mind processes this and you HAVE to live your life. Time does heal this.

[Brookiebiceps in reply to Armyguy]

Hi, what treatment are u on for svt and how was it diagnosed? I was cooking and my heart rate went up to 148, I had palpitations and was shaky.. I laid down and elevated my legs and it came down to 65-70.. I'm still quite shaky 20 mins later.. is this normal?

[Brookiebiceps]

Thank u so much.. it's a fresh wound.. end of August. It's so hard.. the anxiety and what if thoughts rack my brain! I have 5 kids.. I pray for healing.. my mind is hard wired this way.. how are u now??

[Bloodredroses]

I had one PE in lung few years ago , due to APS sticky blood condition (never knew I had ) Heparin one month the Xarelto 20 mg then 10 mg then 20 mg . Blood tests every 6 months clotting good so could come down to 10 mg . Waiting until after Covid vaccine , look at the positive beside lower risk due to age being a woman ? Bring on blood thinners are a a help to not getting Covid . My haematologist told me to take every day without fail . Thinner blood is not Covids favourite . I have felt better on Xarelto , feel better in brain, more oxygen . I stop one day before tooth extraction . By advise, as clotting stable . If you are so anxious , you can get private blood tests to see your clotting factor , My NHS blood test is once every 6 months . Take Xarelto with a meal or minimum milk . I get kidney blood tests every 3/4 months (if no lockdown ) to check all ok with Xarelto . I find sometimes with blood test pricks the bleeding is nothing even on Xarelto . I think they suit me so far . More convenient than going to clinics on warfarin . Not everybody can take the Xarelto depending clots. So I am happy about that . It’s like clots are part of blood . Just adjust it’s good you can monitor and control yours. If you are out of control anxious call your g p get a mild anti anxiety , or melatonin to get a sleep pattern . Discuss periods and Xarelto . It’s their skill they know. Learn to relax by any means you can . Look on sunny side of life . Having blood that doesn’t clot is a bigger problem .

Xarelto is a new generation drug , it’s great if one does well on it . Start looking for the positives in life . A life lived in fear, is a life half lived . 🙏🏻👍

[Brookiebiceps]

Bloodredroses so many valid points. Thank u! How long have you been on the 10 mg? I am sleeping a little better. Still have some side effects of meds I think.. I have 3 months on the 20 mg.. hope you are well!!!!

[Bloodredroses in reply to Brookiebiceps]

Can you get to your G P it sounds like your anxiety is extreme, need help With that . You need to trust your specialist will help a lot .

[Brookiebiceps]

I guess I get nervous because nothing is 100% also I get weird aches and pains that make me nervous. I know it's rare to re clot on thinners but I still think about it. I get scared when I get short of breath