I've had a Pumonary Embolism and am looking for help and information

[Jacster]

Hi,

I had surgery on my leg at the end of May. A few weeks later I went to A and E with chest pains. I had my blood pressure taken and an ECG - I was told all was normal and sent home. Doc explained that antibiotics may have caused my diaphragm to inflame, causing the pain.

The pain eventually went away, and I felt pretty much ok. The only symptom I had was chronic fatigue. I put this down to the op and anaesthetic.

Last week I started to become breathless. Prior to my op I was pretty fit (running/cycling/swimming etc) but I could not walk up a flight of stairs without being exhausted and completely breathless.

On Thursday I had a CT scan and clots were found on my lung. It was confirmed that I had had a Pulmonary Embolism. I was given 1 heprin shot and prescribed 30mg per day of Xarelto.

Long-term effects and pulmonary hypretension were mentioned by the consultant. But little more information given.

I am somewhat in shock, realising that I was in such a dangerous, life-threatening situation. I am a mum to a 9 year old and my husband died just last October from Motor Neurone Disease.

Moreover, I am shocked to read about the possible long term effects of having clots on my lungs. I have read up on pulmonary hypretension and I have to confess it has scared me.

Naturally I have lots of questions and I'm looking for some help and advice.

I'm wondering what the likely hood of developing PH is?

What should I be asking for when I go back on Wednesday (Echocardiagraph?)

How long will I be breathless for?

Will my previous fitness ever return?

Is there anything that I should know about now? Particularly in relation to by next hospital appointment?

All help would be very gratefully received.

Thanks

[Katinka46]

Hello Jacster

Welcome to this forum. I am sorry to hear your story: to have lost your husband to MND must have been truly devastating. It is a horrible disease and then to find that you have developed PEs after an operation is very hard. I am outraged that you were not given a CTPA scan when you first went to A&E. That is truly negligent. First, I must stress 98% of patients who get PEs make a complete recovery. I was one of the few unlucky ones and I now have Chronic Thromboembolic disease. As for developing pulmonary hypertension you must have had an Echocardiograph? That’s an ultrasound on your heart and it would show evidence of PH. I think you have been shabbily treated. You must push for more answers.

Please let us know how things go.

Kate x

[Katinka46 in reply to Katinka46]

Sorry, just re-read your post and see that you may be having an echo. One of the problems with PEs is that they kind of straddle the two medical disciplines of lungs and heart. The specialist centres that deal with PH have both types of consultant.

Write down all your questions. Is there anyone who could go with you? Another pair of ears can help.

K x

[Jacster in reply to Katinka46]

Hi Kate,

Many thanks for your reply and kind words xxx I'm so sorry to hear that you have Chronic Thromboembolic disease. Very hard to cope with I'm sure.

I've been told that I should not have an echocardiograph now as it will show a positive result because right now my heart is under strain because of multiple clot in both lungs. Better, they say to wait until I have been taking anticoagulants for 3 months. Hope clots have gone...test then.

The waiting is very difficult

[Katinka46 in reply to Jacster]

Thanks for getting back to me. I do sympathise about waiting. It is very hard and impossible not to worry. I am very much a worse case scenario type of person. I think it is pointless to tell someone not to worry. Instead I like to think of possible outcomes. I am not at all negative, if you look at my posts I hope that much is evident. Once the worst has been considered then it somehow puts it in proportion. You must have had to do so much of that with your husband.

Right... if you are feeling brave read on: if the clots do not resolve and they become permanently lodged in the blood vessels in your lungs then there is an operation. It is called pulmonary endarterectomy. It is a major operation. Are you in the UK? If so you would be referred to Papworth Hospital in Cambridge which is the only place it is done in the UK. There is a very high success rate and can restore everything to normal. I was assessed for it but they said my CTED was too mild.

Meanwhile your brilliant body is beavering away at clot-busting, sending special enzymes to get rid of the emboli.

Please keep in touch. Via the PM system here if you prefer.

Kate xx

[Clamdigger]

My sister had one and she got shots to thin her blood... I forget how many weeks it was but she had to get blood work done everyday I think.. It was so long ago but she is fine now and its been years since it has happen..Take Care

[sarcoid1234]

I have sarcoidosis and unusually I have had blood clots in my lungs (I knew nothing about it). They were found on a CT scan with contrast (they inject you with something before the CT scan - harmless). I am on apixaban constant blood thinners twice a day.

I also have Pulmonary Hypertension. I expect the echocardiogram is to find out if you have PH. The echocardiogram takes about half an hour and is painless. It will show if the pressure from the right hand side of your heart to your lungs is higher than normal. You will need to see the Consultant later or the same day to discuss the result. If the pressure is higher than normal I expect you will have a right heart catheterisation at a later date to see the exact pressure and the consultant will then know if you have pulmonary hypertension. I take a tablet three times a day for the PH and my pressure has gone down. I hope this helps you.