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Recently diagnosed with PTE need advice

Posted , 5 users are following.

jenny2004
jenny2004

Hey everyone! I’m new to this forum. I’m 29 years old and I’ve been diagnosed with PTE my left lung has collapsed due to the clots and it’s putting strain on my heart. Apologies in advance for the vulgar information but my periods are ruining my life! I’m already exhausted 24/7 and with my monthly cycle I’m pretty much lifeless! Going through far too many sanitary towels and I’m so weak, tummy cramps too! I’m prescribed apixaban for AT LEAST a year! I’m scared, worried, stressed, exhausted and extremely emotional! Pleaseeeee can someone empathise with me? Any advice to help me! I’m miserable and moody and I feel I’m driving the love of my life away 😭

0 likes, 10 replies

10 Replies

  • jen86183
    jen86183 jenny2004

    Posted

    Hi Jenny,

    Wow, you are really going though it at the moment and at such a young age.

    How have you got the clots, at your age it is normally through the pill. I was told I had clots in the lungs, part of my lung had collapsed and there was a question mark over my heart all due to a hip replacement, I was healthy in april at pre op assessment.

    I was prescribed 3 months of apixaban, they gave me a headache, dizziness and sickness, I felt I could live with it for 3 months but, after a month I felt too ill to continue them. I told the GP I was stopping them.

    All I can really tell you is to eat well. If you can eat fresh food, cook from scratch and limit sweet things. The biggest thing to improve health is exercise, it always improves and lifts depression.

    I hope you start to feel better soon.

    • jenny2004
      jenny2004 jen86183

      Posted

      Aw thank you so much for your reply! There is no explanation to the cause of the clots! I’m not on contraception and haven’t had any recent surgery! I did have a c-section but that was 7 years ago! However the doctors seem to think it’s began a year ago when I had about 2-3 weeks on and off with fainting scenarios! Had an MRI scan, all was well! But now this devastating news has hit me like a tone of bricks! Im scared! Stressed! Im always breathless and always napping! I had my heart tested and thankfully there’s no holes or scars however there’s no improvement on my left lung so my right lung is working harder (which also has clots) so I’m really struggling! Docs aren’t telling me anything!! I’ve got an appointment for respiratory Medicine on the 16th August so I pray I hear something!! X
    • jen86183
      jen86183 jenny2004

      Posted

      I know exactly how you feel jenny, I felt the same. Like you I was told nothing apart from you have clots, given apaxiban and sent home without any follow up.

      I have had to learn about it all myself, a big fear was finding out there is no antidote to apixaban and the other new anticoagulant drugs so please be careful while using this drug.

      Keeping active keeps the blood moving so it is better if you can exercise, move around as much as possible. The more you know, the more accepting you can become and build it into your everyday life.

      Take care and let us know how you are getting on.

  • moon53540
    moon53540 jenny2004

    Posted

    Hi I am sorry to hear what you are going through. I had multiple PEs which I am halfway through treatment for. The first couple of months are the worst. I find that when I ovulate and just before my period the symptoms are worse. If the blood thinners are making you bleed more just get the overnight pads. I take multivitamins and minerals as well because I found out I was deficient in a couple of vitamins and I want to make sure I stay as healthy as I can. You can take  paracetamol and codeine for the cramps obviously you are not allowed to take ibuprofen or aspirin. At the beginning I would find putting a hot water bottle on my chest would help the pain a bit and a nice long warm bath. If you get bad side effects from the apixiban ask to change them, I had terrible headaches, a constant anxiety feeling and my PE symptoms were worse on it than other blood thinners, other people can get on well with it though. Feel free to ask questions, people may or may not know the answers but I have learned more here than I did from my doctors.

    Good luck and remember you aren’t the only one going through this, it is horrible but it gets more bearable after a couple of months. 

    • jenny2004
      jenny2004 moon53540

      Posted

      I felt really apprehensive about posting on this forum but Wow! Only 2 replies and this has been great support and advice! My friends and family don’t really seem to understand or provide that much support, i get mostly lectures about going back to work too soon, not visiting family members regularly and also not providing fun entertaining activities for my 7 year old during the summer holidays! The stress load is overwhelming and I’m taking it out on my partner so we argue ALOT! Before this diagnosis we were trying for a baby which we cannot do anymore! It’s been far too much to take in! And the docs just pawn me off anytime I pester them! I work in a pharmacy and that’s where I got most of my information from! I totally understand the nhs under a lot of pressure but a simple debrief of my condition (which is so uncommon) would maybe give me a nights sleep! Totally exhausted mentally and physically x
    • moon53540
      moon53540 jenny2004

      Posted

      It feels very scary when a vital organ or 2 have been damaged and when something you take for granted like breathing becomes a struggle, you kind of hope that you will get support by the people around you, but because people often don’t understand what you are going through, they can sometimes be insensitive or impatient with you. They just want you to be well, but they can be clumsy with what they say or how they act. Some people can avoid you because they don’t know what to say! The NHS are useless when it comes to PEs, they should offer some sort of counselling or help because it is a major lifestyle change and the anxiety can be unbearable. I was told I would have breathing physio, but I have not heard anything back about that. As far as I know there is no charity for PEs like there is other illnesses that you can communicate with other patients. Or any groups apart from this one. 

      I am terrified of catching a cold or flu because my lungs really hurt when I cough and sneeze. I have loads of cold and flu tablets and sachets just in case! I highly recommend lemsip max all in 1 the key ingredient being guaifenesin it really helps when you cough. Stock up just in case, if you haven’t already!

       

  • peter54321
    peter54321 jenny2004

    Posted

    Hi Jenny,

    Sorry to hear about your troubles. I am afraid I can’t help much with your specific issues, but can sympathise with you on the lack of information.

    Lack of information seems to be a characteristic of PEs, as is lack of appreciation that, despite looking ok, you are recovering from a serious ailment.  I personally think it is because most specialists in this area (pulmonologists) mostly see people with other lung disorders. Added to this, PEs affect lungs, heart and vascular systems, which is three different specialisations/departments. 

    Given the above, it appears no-one specialises in PEs.

    From my experience:

    - It can take a fairly long time to recover...some are lucky and get back on their feet after a few weeks, some take a lot longer. Almost certainly based on the severity of the clots.

    - You are going to need anticoagulation. Some tolerate it fine, some seem to be sensitive to one type or another. Most find one they can tolerate, even if they need to try different ones in the process. All anticoagulants except warfarin and very new (last few years). Of the new ones, apixaban is normally the best tolerated, but doesn’t mean it is the best for you....  I went from rivaroxiban to warfarin. I felt awful on rivaroxiban and bled at the slightest provocation. Massive headaches and joint pain. 2 days after switch to warfarin, side effects gone. It’s not perfect, but tolerable, so don’t be afraid to ask to switch to something else. (btw - I have a friend on rivaroxiban and he has no side effects at all).

    - Exercise is good, but don’t push it. Rest when you are tired.

    - Anxiety us common.

    Shortness of breath is very common and a collapsed lungs isn’t going to help one little bit.

    That’s all I can remember off hand, but your best bet is to fire off questions to the forum  here. Someone will likely help.

    Also, each time you go to see someone, write down any questions you have before you go - the mind has an uncanny knack of going blank in the consultation...

    HTH

    Peter

     

  • carol50155
    carol50155 jenny2004

    Posted

    Hi Jenny

    Sorry to hear what you are going through. I had PE last year and this year July marks me overcoming it. Last year this month I was hospitalised, I didn't know what was wrong. Until they found clots in my lungs. I was on treatment for 6 months warfarin.... I had depression and anxiety. I prayed a lot, I'm grateful to be alive not many make it. You are alive and have a fighting chance.... I used to enjoy going on my periods but after I got PE my hormones change. I have the same symptoms, body aches, tiredness etc but after I ovulate I'm much better. It may take some time for your hormones to balance, I'm still in the process as well. You will be ok. Just speak to your Dr about the anxiety and depression.

    • jenny2004
      jenny2004 carol50155

      Posted

      Again thank you all for your replies! Just an update on things - 

      I work in a pharmacy and after my diagnosis I was on amended duties, basically sitting down dispensing medications however we had a relief pharmacist covering my bosses day off and he didn’t know anything about my condition and delegated my tasks for the day which was work on the health care counter. This involves a lot of running about, providing advice and guidance to patients so as you can all imagine I became very lethargic, breathless and dizzy. Long story short the stand in pharmacist sent me home. With my emotions so high the now I burst out crying and went straight to the doctors. Got a sick line for 2 weeks and antidepressants. I’m needing advice though guys this is a new job and I’m on probation. My contract states I can’t be off more than 2 times or it’s a dismissal! This is now my 2nd time being off with this stupid condition! I’m so stressed out that i’ll Lose my job! A work colleague joked and said i’ll Be on disability living allowance until I’m better!! I don’t even know what that is! I just want to work! And to top things off they never payed me any sick pay! No SSP nothing!!! So my wage is literally halved and I’m at my wits end with it all! Please can anyone give me any advice! 

    • moon53540
      moon53540 jenny2004

      Posted

      I don’t know much about this sort of thing, but maybe get in touch with citizens advice. Have a look at their website on rights at work. I am sure you won’t lose your job with something as serious as a PE and collapsed lung. Good luck.
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