Symptoms

Hi Debbie01,

I was diagnosed january 2016 and was only found clear in July 2016 with a follow up clear in December 2016 with further testing.

The effects of pulmonary embolism does have an effect on your body. I was in zeralta until July 2016 and then was switched to baby asprin, if which I still take today.

It takes 6 months minimum to have the medications work on your body properly and you have to keep yourself "calm" and in the mindset that you will get better. I recognize my body still reacts to stress (extra work hours, not enough sleeo, etc.) That causes me shortness of breath sometimes and chest/ soreness. Keep yourself positive, after 9 months i was allowed to go to the gym again to do light cardio and weights that does help reduce stress and anxiety. Keep your doctor posted if your conditions as they change. Others do not know what you are going through, people on this site do

Be strong and have faith.

Clots in both lungs diagnosed in August. Had no follow up appointments. Just left with apixaban blood thinners. I know what you mean. I had felt better a month or so ago. Now I am breathless again with pressure on my chest feeling. Just getting really fed up now. So many jobs to do and can't do much at all. So tired and rapid heart beats. You are amongst friends. We will have to help each other through this. I have family and friends but this makes me feel alone. xx

Hi Debby,

I am afraid that what you describe is often the case. Some people do recover quickly, some take longer. Much probably depends on the extent of the damage and the individuals' capability to heal.

I would try to correct what I think is a misconception about drug treatments (not an expert here, so if somone knows more, please jump in). It is my understanding that most of us get no treatment for the clots/damage - the anticoagulants are preventative [of further clots] not a treatment to heal exisiting clots. The body itself clears the clots away. If any remain (maybe where the blood flow is cut off??) and these can form scars. 

So, you are left in a situation where there are a number of things that can make you feel worse:

You are healing, so the body is using resources to carry this out.

Lung capacity is reduced whilst the clots are present.

The underlying cause of the PEs may still be present.

If you are still taking anticoagulants, they make you feel less than 100%

You are getting less exercise, so will get less fit.

Not trying to paint a gloomy picture, just drawing attention to the fact it will take time. I am about a year ahead of you and the people who replied above and I am a huge amount better than I was. It just took time. My memories of recovery are fading, but it was something like:

Months 1-4 I was unable to walk far and found a number if activities difficult. 

Months 5-8 I was able to walk twice as far, could do much more (although mowing the lawn was a no-no).

Months 9-12 I was back to normal on walks, many activities also back on the menu. Still got the occasional chest discomfort, but generally felt pretty good.

Months 13 to now: hit winter and found transitioning from cold to warm air was a challenge. Otherwise stayed about the same as before. With the warmer weather aches are less, so I am guessing spring will bring continued improvements and maybe summer I will be back to 100% (although as a "lifer" on warfarin, I will have to stop riding fast bikes and stay away from sharp knives.....).

I am probably at the extreme end of the problem, as I had many large clots in both lungs and I am no youngster. Most of you should see a faster recovery.

Hope that helps.

Peter

p.s. When I recently asked some questions about PEs at the warfarin clinic, I drew a blank on answers. This was because they have almost no PE patients (because it is fairly rare occurrence).

P