Moving on....

Chest and lungs
1

Hi... I'm a 48 year old newbie to this site. I am two and a half months on since suffering my second unprovoked pulmonary embolism. My lung is slowly improving though I have ongoing bouts of pain which I've had on and off since my first embolism. I am also anaemic which is adding to my fatigue, breathlessness and brain fog though I am being treated with iron infusions for this.

My main problem is in accepting the above. I feel angry that I have suffered a second clot and need to take medication for the rest of my life. I try to put on a brave face but tears never feel far away. I don't believe I am clinically depressed and I have a good support network but I don't want all our conversations to be about my PE!!! 

i am wondering if others felt the same way and if so how they managed to move forward.... any advice or suggestions would be greatly appreciated.

Many thanks, Catherine

 

2

Dear Catherine (it's a lovely name isn't it!)

I admire you for the courageous way in which you are facing this serious condition.  You are very perceptive to know that you are finding it difficult to accept the pain and anaemia which are symptoms of a life-long illness.  I'm not much older than you at 52 but serious health problems do seem to hit post 40 don't they are I personally wasn't prepared for mine which also involves a life long medication.  With mine, which by the way today is BiPolar Awareness Day, the minute I talk to anyone about it, sometimes even those with the same condition, I feel totally paranoid and I imagine that they are thinking worse of me and judging me when in reality I think that they are simply trying to process the information.  What has helped me is knowing that I don't have to talk about my illness to anyone except doctors and psychologists.  I do feel dependent on others but have found that by accepting taking life a little more easily, other avenues open up and I don't need to feel I have got to conform to a group all the time.  PS: I looked up PE because my dear old Mum had a PE post op which I thought must have been caused by lack of DVT socks but am reliably informed that this wasn't necessarily the case.  

My thoguhts are with you, CV

3

Hi Catherine,

I know exactly how you feel. I suffered clots in my lungs and heart at the end of last year and due to an initial misdiagnosis on my first hospital stay (I have a problem with one of the valves in my heart and so they were blinkered by that despite my gp sending me there with a letter suggesting a pe.) I spent Christmas in hospital. 

I am still trying to come to terms with everything that has happened and the implications that it has had on my life. Like you, I always feel that tears are never far away although I try and put on a 'happy face' when I'm around family and friends. I also felt a lot of guilt for everything that I put my mum and husband through. We had only been married for just over a year when it all happened and I just felt that his family were wondering what the hell he'd got himself in to when in reality they couldn't have been more lovely and caring.

I have recently started seeing a counsellor at my local surgery. I feel that in talking to someone about it who is completely detached from the situation I can unload how I'm feeling without feeling guilty for talking about my pe yet again. I don't want to be defined by my health issues, I want to be me and hopefully talking it through with someone is beginning to help. 

I also find this forum very helpful because there doesn't seem to be a great deal of knowledge about recovering from this condition within medical circles, only that every person is different. Being able to read other peoples experiences and relating to parts of them helps me to understand that I'm not alone with this.

Hope I haven't rambled too long and that maybe a small part of this may help.

Best wishes for your recovery,  Alison

 

4

Hi Catherine firstly may i say how amazingly brave you are being. When i was diagnosed with the unprovoked blood clot and now on daily blood thinners for the rest of my life the impact it has had on me has been massive. Depression anxiety pain fear exhaustion and dreading

a recurrence. Of late the chest pain i have suffered due to the damage from the clot has been awful and reduces me to tears. I want to tell you to take one day at a time surround yourself with people who understand do not push yourself when you need to rest and keep moving forwards. I had an amazing mental health nurse who i saw weekly and i have a lovely doctor both very important to get through this. Please keep in touch. Big hugs Deb

5

Hi Catherine

Good to hear from you I had a bilateral embolism 3 in total beg sept . I am not yet at work. I fell down the stairs s week before and gained soft tissue damage to my ankle and foot still unable to walk on my foot so using air boot and crutches. We hired a wheelchair to get out a bit I'm so breathless with my crutches iv managed to walk a couple of yards and that's it left gasping for breath. Get the occasional chest pain . It's been 5 weeks since u fell downstairs and I too am tearful sometimes I feel I will never be 100% the slightest thing and I'm in tears .its horrid the fear of another PE no real follow up. My foot taking forever to heel. I struggle with breathing if the room is particularly stuffy or too warm don't know if anyone else does I know it sounds funny but feels like not enough air in the room. I'm happy to chat anytime good to speak to someone in same position

6

Thank you to you all for replying :-)  It's nice to know I'm not alone with my feelings.

I think that I will feel better psychologically once my anaemia is sorted and I feel physically well again. In the mean time I will keep talking to my friends and know that there is support out there if I need it further down the road :-)

7

Hi Catherine

Im sorry that you have this life changing condition. I'm not in your situation but my friend is, she is in her early 40's and has a 5 year old....just so shocking! What I would like to ask you is how do I as a friend support her with this problem. She is in tears a lot of the time and has a complex personality so I just don't know what to do. I would really appreciate your view on this if you wouldn't mind.

thank you so much xx

 

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Hi Linda :-)

   I'm not sure there's a black and white answer to this question as I don't know your friend but the fact she has you is wonderful! :-)

A lot of people have said to me that " you'll be fine " or " At least you're on the right treatment now "  which, for me, were not constructive comments though I know they were said with good intentions! The reality of this is that I don't know I will be fine and I could die in the blink of an eye should I suffer another clot! I'm not sure that those thoughts will ever completely leave my side but as the symptoms subside so do my fears.

For me.... a little text... a Facebook message.... or time spent together were all reminders you are cared for and it means a lot. Listen to her if she needs to talk.... give her a hug if she needs one... and talk about other things.... not just the clot! 

Just be the great friend you obviously are and that along with time will I'm sure be great healers.

If time doesn't heal then counscelling or antidepressants are both options though I personally believe this should be further down the line as we all need time to heal our life changing events. 

It's three and a half months since my clot and it's early days. Some days are harder than others both physically and mentally, however, with each day that passes it's another day that I've lived.... that's one hell of a positive!

Feel free to private message me if it helps

Cath :-)

 

9

Hi you

thanks very much for your thoughtful reply. How do I message you privately?

thanks

Linda : ) xx

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I think if you click on my name then there's a picture of a message box you can click on to send stuff privately xo

11

Or if you're on your phone you can click on the number of members on the main page for p.e. then find me and a message box piccie that way xo

12

Hi ya Catherine

I'm in a similar situation to you. I'm a year post a biggy in the chest, and a year and half from from one in the calf.

Keep taking the meds, and relay side effects and pains, breathlessness, fatigue etc with doctor. You accept that you may have a really bad day in future. And in my case, appreciate life more than before. I took life for granted.

I lived outside of myself as a means to cope, and during the process grew disconnected (not diss associated) from my life before P.E. I've set new priorities/goals for myself which are different from before.

My disconnection is a result of not knowing what this condition is about and having to get on with life- trying ones best to tend with responsibilities, knowing the potential immediacy of this condition. And continued tippy toe healing, recovery and bumps along the way. I hope my experience helps

13

Seems we all feel the same! :-) Thanks for you reply and keep up the good work! :-)

 

14

I just wanted to reply as in quite a similar situation and just wanted to let you know you're not alone. Up until this year I hadn't been in hospital since I was a teenager, I'm now 32.

I had a hospital stay in September during which I developed a DVT in my leg then which then has also led to me developing a PE in my lung. I thought I was improving but last week after two weeks of feeling better, I've had increased pain and breathlessness which doesn't seem to be improving and can be limiting on my everyday activity. I am also struggling during the last week or so to get my INR at therapeutic range for no obvious reason.

I recognise a lot of what you say, I'm scared of the effects that the PE has had on me, am going to have an Echo as my heart rate is quite fast. I feel bad that at the moment I can't keep up with my 18 month old and recovery seems very slow and painful. I also don't really seem to have been given hardly any information about recovery from the PE and this seems really difficult to find.

I know I probably haven't really added much to this but just really wanted to say that you're not alone and really hope that you can move on. Take care everyone

15

hello everyone,

I've decided put pen to paper my experience with PE and how it went after leaving hospital. I will work as fast and concise as I can with the aim of providing an illustrated experience/model for people in my situation and the challenges I face 'moving on'...

I have spoken to a number of health care professionals and the most recent person- a mental health professional/councillor said to the effect/and I've added/generalised... "a VTE/PE talk group could be formed privately from a medical standpoint, commercially compatible with NICE guidelines. I have skills lacking and will do my best to upgrade and network.

An observation is that the NHS is a dinosaur with lots of bureaucracy, policy and administration. She also said my idea is 'grand' and not 'grandiose'; and when I speak - at times a torrent of information comes out and at times not easy to understand.

I am passionate about this and being in a sticky situation is difficult.

16

A support group would be awesome! I could find nothing when I Googled it hence wrote the post here instead! The support and topics have helped me a lot over the past few weeks! Knowing that anxiety is suffered by many of us out there helps me feel normal! :-)

17

Hello All, this is what I am passionate about and want to do and develop for a 'Moving On VTE Support Group', pls excuse spelling etc

'People with stress enter a state of fear > flight or fight

When I had DVT/PE, I entered into a so called 'primative state of being- having a wider peripheral vision and production of health sustaining hormones.

My personal VTE stress experience

At the end of this post, is a draft logic map showing my personal VTE view on stress and need for group support, i would like additions or amendments.

There maybe gaps in logic flow, interpretation with semantics, and misunderstanding of language.

English is my first language, cantonese is my second. It is possible english second language users translate core stress management concepts is incorrectly.

Here goes...

It is impossible to mentally emulate fear> flight or fight.

People with DVT/PE are not not animals nor birds. I am take daily anticoagulant medication, have human mind and body.

This is my case for a dedicated support group for a person or persons with an unknown cause leading to a lifelong potentially fatal medical condition, whilst taking, DAILY MEDICATION, EXPERIENCING SIDE EFFECTS, RESPIRATION AND CIRCULATION and appearing normal to a third person.

Emotional VTE Stress cycle

VTE Stress <> medicated side effects <> stress hormones <> old clots dissolving / breaking free <> pain hormones / stress hormones <> fatigue <> mood - anxiety or depression <> sensitive mind / delicate constitution <> heart and appetite needs and wants <> percieved self > actual self <> home <> work <> social <> antisocial > lonelieness <> anxiety hormones > VTE Stress <> medication <> social & anti social drugs & anti depressants < > Dependancy <> control & Spiral up/down > conditioned and acceptance <then> FIGHT or FLIGHT <> Social benefits and welfare state / self employment / full employment and society

Physiological reaction to VTE Stress cycle

Reaction to Unknown – alert signal explore and learn, self assessment, view of surroundings group & society, assess state of genetic maturation and ability

Curiosity – Rationalise the unknown through logic derived from learned experience - ability to bridge gap between percived self to actual self and acceptance by self, group and environment followed by environment acceptance of group an differentail groups, assessment of environment by group harmony, ability to work, happiness> work/life balance.

Mind & Body Overwhelmend -

Default to Defensive mode- Endocrine system and auto nervous system take over - hormone release accelerated biological processes –

blood circulation underprerssure

deplete energy reserves respiration underpressure & not performing

anabolic state/ catabolic state / every breath hurts / don't want to breath / don't want to move /

go back to beginning

Primative state of mind & body

Sensitive to external inputs> receptors> peripheral nervous system> instincts> mind & body chemistry altered

1. endangered state of being> Reaction, Interpretation, trauma

2. Learned instincts rationalise - go back to 1

3. Reasoning, priorites & sensibilities are formulated. Traumatic blueprints of thought scenarios and emotions logged in conciousness & sub-conciousness

4. Peripheral nervous system alerted<> Automatic Nervous System alerted< > Endocrine system alerted <>Muscular system alerted <> Skeletal system alerted <> Structural integrity>  Difficulty in finding comfort lying down, at rest, sitting up, breathing <> Instincts and learning take over <> rest with feet raise, knees bent, torso in raised position leaning to left hand side <> Continued pain breating <> Distress <> Increasesing attempts to rationalise the unknown <> more aware of environmental and internal inputs

Mind & Body

Every breath hurts, heart beating fast/slow/hard/soft/skips beat/odd patterns/ weak, fatigued, tired/ head in the clouds

Try and rationalises the unknown – belief, meaning of life, religion

1. Access life sustaining energy

2. Forage for more energy reserves, oxygen – blood – food & water

3. Regroup

4. Act on instinct-

5. go to 2, go to 6

6. Withdraw/conceal> Interpretation, traumatic?,

7. Formulation of emotional & physical triggers

8. Surrender> go to 4

10. Rationalises - learns, revert to beliefs, question meaning of life

11. Make decision

12. Defend self and heal - go to 1

13. Nurture, Sustain,

14. Voluntary, Involuntary resignation

15. Moving On!

 

18

Merry Christmas Dr Maia

all is well

19

Interesting input there!!! 

20

It is a serious condition and my mama died of it: she was ill with dvt, cancer and manic depression.  I wish I had known how to take care of her but was a gadabout teenager and mama was divorced so had no adult to support her walking around slowly enabling her to get enough post operative exercise so that she mght not have had the PE.  I used to think it was because she wasn't wearing DVT stpckings but persons on Patient have listend to me and I know that that wasn't the case.  Be positive and when depression falls do everything you can to send it on its way.