2 years on and still struggling

[Banter4life]

I had a very awful PE August of 2018 from Birth control use and have never fully recovered and very tired of crying to my GP what feels like round the clock.

First I was told recovery would be quick once I went on treatment after being hospitalised , resuscitated and treated for heart attack until extensive PE picked up 4 days later.

Then I could not walk anywhere further than the bathroom and with extreme difficulty due to dizziness and shortness of breath and chest pain, I self discharged 8 days later as it was horrific being in hospital and just laying there unable to move around I wanted to lay in my own bed. Reluctantly hospital agreed but I had to attend 3 times a week for blood tests and everytime they wanted to readmit me and this went on for 4 months.

8 months on I had recurring excruciating right sided chest pain that woke me up in my sleep and rushed to hospital several times, but told it was in my head cos PE tests and heart traces were clear and heart scan 3 months after had shown full recovery of my right artery which a clot had damaged. I took pain meds for long time after that until a CT scan 8 months later showed swelling to right lung.

But I eventually went back to work as my mobility improved and I was getting used to the constricted chest feeling which meant coming home shattered and going straight to bed, and zero house chores. I lived with poisoned feeling from warfarin , cold all the time, shortness of breath and fatigue and inability to exert and pain.

Then 15 months later switched to Edoxaban, helped a lot in the poisonous feeling department and almost weekly clinic visits. I could by then climb a single flight of stairs and walk with more ease. But By December last year I had random bleeding in my urine, bowels and teeth, heavy periods, on and off excruciating pelvic pain, chronic bloating, constipation and continued fatigue and pain that flares up in my right lung whenever I try to exert, nausea and severe headaches on and off and constant muscle pain in my legs.

I tried to get used to my new normal but it's hard because it's two years on and I have made no further improvements. Now I also get random body swelling (feet ankles, legs, breasts, face, fingers) when it gets warm or I try to exercise (I'm still hopeful) and it takes hours sometimes days to subside and it hurts to stand on my feet when this happens. I still get pain in my right chest when I try to exercise i.e walk fast on a treadmill so I quit. My weight yoyo's by as much as 5kg as a result of this swelling.

I have to force myself to do some of the chores around my home and its tough, but I force it to stay active, also get frequent chest infections when it's cold and often my fingers and toes feel icy even though other people say it's not cold. It makes me cry and my question is will I ever be normal again, is there anything I can do to get a semblance of normalcy which everyone else with PE seem to be experiencing?

Sorry its long but if you can relate or advise I really would love to hear it because my GP makes me feel like I should have been over all this by now and I haven't seen GP since February when I was referred for colonoscopy which was cancelled due to pandemic and the fact that I had an ongoing chest infection. Thank you for reading my essay.

[Hidden]

Huge hugs - you are going through it! Are you under the care of a haematology team at your local hospital? If not, maybe you should ask for a referral. And whoever told you it's a quick recovery should be shot - usually it's a good two years, if not longer. It does sound as though your current anticoagulants don't suit you very well - again, maybe you could ask for a rethink, although sometimes they don't prescribe (e.g.) rivaroxaban or apixiban if they think you might be allergic to it. The practice nurse told me they are getting better at knowing who would probably be allergic, and not prescribing it to them.

[Banter4life in reply to Hidden]

I cannot thank you enough for your response my anti coagulation clinic told me it would take time as I had pulmonary hypertension too, but GP kept telling me I would be fine in 4 weeks and every 4 weeks I was filling in leave of absence forms for work which made me feel terrible and frustrated as I kept expecting a quick recovery.

A&E on my numerous visits said nothing out of the ordinary and I was probably over thinking things due to the shock from the experience I had and it did not make sense to them that I claimed the paracetamol and codiene they gave me was not really helping. It was ibuprofen that actually allowed me to sleep so that's what I started taking. So I too began to think it was all in my head.

I took the pain medication and agreed to be discharged from the Respiratory Department who said that since cardiology were also happy to discharge me and I had made remarkable progress in my mobility, it was the logical move and they did not expect the CT scan I had had a week prior to show up anything when results were due. Then only for them to write a month later and say I did have swelling on my right lung, the one I had been complaining about but since I was coping they would discharge me anyway and back to my GP and me fed up of hospitals agreed.

At the same time I was taken off birth control methods and told I cannot have my tubes tied as no anaesthesiologist would agree to touch me. So I had a new horror of pregnancy to deal with on top of everything else so after months of back and forth with gynaecologists I got the we are very sorry but good luck phone call. It took a year for my period to resume again after not having them for 6 years. In the same period my smear tests were coming back abnormal, I even had an attempted utrine biopsy without anaesthitic it was awful and I went alone.

I had so many interventions at a point my practice nurse said try praying there is too much going on and I should try self help too, I cannot be calling crying every week. On referral my family planning clinic said if I agreed they could put me back on the birth control I was on initially as it was the safest and that made no sense to me so I declined. Being married have used barrier methods which sometimes fail and I drive myself crazy waiting for end of month as no after morning pill for me.

But you are right I should ask to be referred back to my anticoag clinic who also discharged me into the care of my GP end of last year and said to give it time for things to settle down and GP would take over from there. It's been more than 6 months and no mention of review from GP who wanted to take me off Edoxaban and back to warfirin when I have had two prolonged bleeding episodes from my urinary tract and GI, but then I was dealing with the chest infections too which she was treating me for and multiple pelvic ultrasounds.

This is the first time I have verbalised/ written down all that I have been through after the PE and seeing the journey still ahead, I got tired of feeling so alone and broken, I guess it's all just come tumbling out. I have been feeling very ashamed by my slow recovery, complications, time off work, inability to fully support my family, but now you say it can take time to get there and so maybe I'm not a crazy attention seeking hypochondriac who sits around inventing things wrong with her body. Even to my family I sometimes pretend I am better than I actually am, I generally refuse to talk about my health with them and blame my age except when I can't hide the swelling and because I feel ashamed being so weak and struggling with simple things.

I will now at least ask my GP to refer me back to anticoag and take it from there. Thank you again I truly appreciate your comments and advice and I now have a clear starting point for action and feel less alone. I wish I had used this platform sooner.

[Hidden in reply to Banter4life]

What I sometimes think even the anticoagulation people don't realise is how much anxiety impacts us PE survivors; many of your symptoms may well be caused by anxiety, which doesn't mean they aren't very real indeed! Hang in there, and take it one day at a time (and incidentally, properly used, barrier methods are fine - it's only when you decide you can't be bothered to put in your cap, or put spermicide on it, or he runs out of condoms that problems arise).

[Banter4life in reply to Hidden]

Thank you again, this is very reassuring, I am actually smiling now and carrying less tension which I'm certain has not been helping.

[Jomomo in reply to Banter4life]

PLEASE, DON'T GET BACK ON WARFARIN. It's funny how we feel like we have to apologize and feel guilty for our slow recoveries. Why is it a big secret when you leave the hospital? Get well soon they say. All the while knowing it takes years! I know how you feel. I cry and cry and cry, why me? I'm isolated and alone. It's miserable.

[Hidden in reply to Hidden]

That's the thing everyone recovers at their own pace when they are good and ready.

[motorbike in reply to Hidden]

I agree , I’m still having pain in my left side of chest, sometimes in the middle. Ankle and leg swell up, since DVT, so I suppose the Pulmonary Embolism Mass , May have caused pain. I’ve never been to another Scan, to see if it’s still there. Never seen a Haematologist. Great isn’t it

[bookish]

Hi, just wondered if you have been checked for Antiphospholipid Antibody Syndrome (or Sjogren's come to that). Best wishes to you.

[tracey13]

Sounds like you've had an hurrendous time.

I've had three DVTs the last one was hurrendous I got post thrombotic syndrome the pain was terrible in my leg .

I've since had three separate visits to hospital thinking I had another clot it really makes you paranoid when you get symptoms.

I was on warfarin omg I felt so ill 10mg some days I was on I was telling the nurse I felt so sick she was surprised !! Side effects says sickness.

I'm now on rivoxaban for life I've been fine on this tablet.

I hope you get some answers don't back down you know your own body .

Tracey

[Brookiebiceps in reply to tracey13]

Hi Tracey, how are u now? I'm also on xarelto. How long have u been on it

[Gingerapple]

Hello Banter, I am so so sad to read this and I feel for you enormously! There is nothing worse than feeling like this!!

I've just had a PE and I really can't advise just wanted to tell you how I am in spirit with you! And if you ever want to chat with me, just vent and rant, please message me and I'll lend my ear wholeheartedly!

I send you healing vibes and prayers for a change in your circumstances !

I hope someone here CD an advise what you can do.

All my love, Bev xxx 🤗❤❤😘💐

[Brookiebiceps in reply to Gingerapple]

Bev, are u still on treatment? How are u now?

[Gingerapple in reply to Brookiebiceps]

Hiya, I'm still on blood thinners....I start radiotherapy on 24th.....how are you? 😊

[Brookiebiceps in reply to Gingerapple]

Radiotherapy?? I was diagnosed with PE in both lungs and 1 in my ivc vein at the end if august. It's a fresh wound so its rough. I'm on xarelto and question every little pain. I'm 40 and was really active. Now I'm weak, sad, scared and anxious

[Gingerapple in reply to Brookiebiceps]

Good morning 🎈

I'm sad that you are anxious and scared, that's a horrendous situation to be in. Have you spoken to anyone, a GP? You can't live like that for long, it'll cause you far too much stress! You don't need stress. I'm having radiotherapy because I have lung and breast cancer and had the PE because of the lung tumour, that's why I was asking about blood clots, because that was my first. The battle is just beginning. You need to see so.eone who can help you. I was scared at first but I just can't live being scared. Let me know what you find out, keep me informed. Until then I wish you some peace and light! 🌟🎈♥️💐

[Brookiebiceps in reply to Gingerapple]

Same to you! May God heal you and anoint you! I'm sorry you have so much going on.. you sound like a strong woman. I'm trying to find peace but some days I'm just so weak. It's only been 3 weeks on xarelto so I hope I adapt mentally and physically..

[Motty]

Hi, I had a PE in both of my lungs three years ago. It came out of the blue, but found out I have Lupus Anticoagulant , which basically means my blood is way too thick. I’m on Rivaroxaban for life now. It took me well over two years to recovery fully, kept getting chest infections, tired all the time. It was a long recovery and now Im nearly back to “normal “.

[Hidden in reply to Motty]

I had a pe in 2017 as well just before Christmas as well!

[Brookiebiceps in reply to Motty]

Mott, how are you doing in xarelto? What mg are you on?

[Motty in reply to Brookiebiceps]

Hi, I’m fine now, have to take 20mg every day for life . Never had any problems with the medication at all.

[Brookiebiceps]

Motty how old are you if you dont mind? Do you get bloods done often?

[Clotinthedark]

Hi B4L, how are you doing? DVT/PE affects us all in a different manner. You have obviously had a tough time with it. Hope things get better for you. H.😀

[teaship]

Hi sorry to here about your poor health but your not alone. I had a massive bilateral PE in 2014 and still have many of the symptoms you have to this day. I was put on rivaroxaban for life and have wondered if this courses some of the problems. I am now 55 be feel more like 75, before the PE I was cycling 10 miles a day and was fit for a man of my age. Sorry I cant give you any good news but I have come to terms with it now and say to myself a least I survived it. My GP is a waste of time on this subject and thinks I should have recovered years ago, to be honest I don’t think they know enough about the damage PE does to the body. Good luck for the future and I hope you improve regards Richard.

[Brookiebiceps]

Teaship, what mg of rivaroxaban are you on? Have you been on this med since 2014? I've been on it for 4.5 months and will be on it indefinitely.. as long as my insurance covers the cost. I'm on 20mg once daily but told I can eventually go to 10mg.. let me know your thoughts.

[Jomomo]

OH MY GOD! Everything you say is EXACTLY what I'm going through. I am so tired all the time and can barely walk 10 feet. I have had 5 blood clots in my lungs in the past 2 years. In Dec. 2021 I had surgery to remove 3 clots! Doctors don't discuss recovery time with you. It takes 2 to 3 years to recover. I had a cardiologist that did nothing to help me the first year. I was on Elliquis for one year nothing else. I switched cardiologists and this one is hit and miss. Try this, stop taking this and try that, try this instead of that. I feel like I will die from the meds before my heart gives out. Two weeks ago almost bled to death internally with warfarin. Taking warfarin was eating rat poison everyday. Because thats what it is... its used in rat poison. II was literally poisoning myself for two months then almost bled to death. I moved in a new home last March, 2021. I still haven't unpacked all my boxes. I haven't decorated the walls. I literally can't do it. I don't cook, mostly order deliveries. I don't clean house or do laundry, my husband does. People don't understand when I say I can't do it. I look healthy. But inside is a volcano ready to explode. I feel like a train tuns over me everyday. No one, unless you have this disease knows what its like. I cry and I cry. And I wonder, is this it?? Just day to day existence, living in pain, no mobility. My old life is gone and I'm stuck with this. I feel like I'm just not getting the best healthcare that I should be. I feel like there is much more that could happen to treat me. But it doesn't happen. This is a disease not many people are aware of. You may get over the blood clot. I may dissolve or you have surgery. But the after effects are what kills you.