Too often the psychological impact of blood clots is overlooked.
After a delayed diagnosis John was admitted to hospital with large bilateral PE’s. His medical care on the ward was excellent, but John explains how the impact of blood clots and the ongoing exhaustion left him feeling alone and isolated.
As a perspective new volunteer for Thrombosis UK, I was asked to share my own personal experience of contracting blood clots. Jo the CEO stated that it is especially important for men to share details of their health as many men find talking about this subject difficult and subsequently feel alone and isolated.
alone and isolated - for that has been my overriding feeling
Well for me the content of the last sentence hits home hard - alone and isolated - for that has been my overriding feeling both in the lead up to diagnosis and the subsequent period post diagnosis. Note I have not stated recovery as I am still very much at the mercy of the original clots.
I am guessing that by the time anyone reads my testimony they will have undergone the initial diagnosis of DVT/PE.
In many ways I think the lead up to the confirmation of blood clots is one of the most distressing periods. I for one was only diagnosed with large Bi Lateral PE’s when I took myself to A&E early one morning having woken up in excruciating pain. Prior to that I had had two months of people telling me that I had Phlebitis and that a scan on my thigh had shown no clot. Indeed, on one visit I was advised that I was fixated on the problem and should see a mental health nurse and less than 24 hrs before admission to hospital I was informed I had irritable bowel syndrome.
It was from this point that the feeling of being alone and isolated started as I could not convince anyone to take my concerns and feelings seriously!
Since finding the Thrombosis website two or three months ago (why is it not signposted on leaving hospital?) it appears that many people have similar issues of mis diagnosis and I think that this leaves sufferers of Thrombosis mentally weakened even before they come to terms with their actual condition as they have consistently fought to get their opinion of their OWN health recognised and taken seriously.
the knowledge I was suffering from Pulmonary Embolisms was strangely a relief
I would therefore say that for me the knowledge I was suffering from Pulmonary Embolisms was strangely a relief, even though I was seriously ill, I was not imagining things and what I was experiencing was real.
Personally, I spent seven days in an acute cardiac ward and I could not fault my care from the nursing staff. Over the course of these seven days I was gradually allowed some freedom of movement and on the 7th day the coronary consultant that had looked after me said that I was free to go and to carry on living my old life. I was prescribed anticoagulants (Apixaban) and informed about the risks and told that I would be on them for the rest of my life!
That for me was the day when I truly felt alone and isolated. I was in lots of pain, felt absolutely shattered and scared that at any minute I could have a repeat episode and die!
There was no follow up with the consultant, no information about this life changing event, just the additional worry that at any moment I could cut myself or bang my head and then suffer another traumatic and potentially fatal incident.
In the first three or four weeks I got accustomed to the pain and tiredness and thoughts of death diminished quickly. Friends and family were all super supportive and attentive but over time this concern naturally diminishes as people think that you are getting better, you are out of hospital so obviously on the road to recovery!
The thing is for me this was not the case (I have subsequently learned that this is not the case for many sufferers) the pain was still acute and the tiredness overwhelming.
Having changed doctors (due to the events leading up to the actual diagnosis – only some of which I have mentioned previously) I visited my new practice.
I mentioned to the doctor that I was not getting better and that the pain and fatigue continued. The response was that it can take time possibly 6- 8 weeks, just be patient. However, eight weeks came and went and still nothing, now the doctor stated that in some unlucky cases this can be three to four months – hang in there!
As soon as I came out of hospital I did the normal thing these days and googled PE’s and was expecting to find loads of information and support but alas no. I found the number for the Lung Foundation and called their support line. A lovely nurse called me back and I explained my condition. She stated that they really do not cover clots! She was amazed that there was no support group for sufferers of PE’s but she too looked up on the web and concurred that she found nothing! Hence the growing feeling of abandonment.
However, there was a glimmer of light when on my third visit to the doctors (some 4 and half months after diagnosis), they recognised that something might be amiss and I was referred on to a respiratory consultant.
That is when Covid intervened as all respiratory clinics were cancelled due to the 2nd wave. When I called in January, I was advised that even though it stated my referral was marked urgent no appointment would be forthcoming until the covid situation improved. It was at this point that my wife took the opportunity to visit the matron of the acute cardiac ward I was on when I was first admitted. The matron did remember me and was surprised that I was still suffering and said that she would mention it to a respiratory consultant given that I had been referred by my doctor.
Out of the blue I was contacted by phone by the consultant who after I explained the timeline and symptoms said that he needed to investigate further and set me up with several tests including another Cat scan.
About a month after all the tests were done, I was again called by the consultant who stated that all the test results were normal. However, he had yet to look at the Cat scan but suggested that we touch base again in another two months. Wow, that really knocked the wind out of my sails, again it seemed that I was abandoned and left to my own devises without no one wanting to help me understand why I still felt so ill and more importantly help me get better.
Then about 1 week later I received a call from the consultant whilst I was driving; he stated that he has finally reviewed the Cat scan and it showed that whilst the main clots had dispersed there are a number of clots in the peripheral arteries of both lungs. He then went through the potential options; referral to specialist in London or potential operation but that I should wait and see if these clots resolve themselves and to touch base in a couple of months.
As I was driving, I could not take all this in but as soon as I got home I looked up the phrase that he used for these smaller clots – Chronic PE’s – and what I read was not cheerful reading to say the least. I was even more stunned and bewildered and again my wife went and saw the Matron who again relayed our concerns to the consultant and to our great delight I received an appointment for a face-to-face consultation.
At the appointment I got a chance to express my concerns about the potential consequences of Chronic PE’s but was relieved to learn that apparently there are several causes to my ongoing ailments. The first call to action is to rule out options such as persistent inflammation or rheumatoid based conditions, then there was the option to be referred to specialist centres in London.
at least I do not feel as if my wife and I are facing this alone and somebody believes that I am still unwell
As I write some of the tests have been completed and I have an appointment to review at the end of June. Whilst I still have no specific diagnosis and subsequently no prescribed treatment plan at least I do not feel as if my wife and I are facing this alone and somebody believes that I am still unwell.
What I would say to anyone that has just been diagnosed with PE’s is that you might be fortunate and be one of the 50% (made up figure not factual) who recovers quickly and if so well done, crack on and enjoy life and do not let the experience cloud your future.
I want to stress that you are not alone, the symptoms you are feeling are real and many other clot victims suffer these problems
To the other 50% I want to stress that you are not alone, the symptoms you are feeling are real and many other clot victims suffer these problems.
Time may well be a healer so do not expect to be anywhere near fully functional in three or four weeks. If you are still unwell after four months and are not being regularly monitored by health professionals then please push for referral to a consultant or specialist unit.
by Andrew Kennedy
