Pulmonary embolism after care😢

Hi Steve. 

I was referred to Respiratory clinic appointment last week. 

9 weeks in...I wish I had been referred earlier as felt so fragile mentally. 

Consultant was very reassuring, happens to anyone. 

Referred for another chest X-ray to see if clear and ultra sound on painful leg. I get very little side pain now😐She was very thorough. 

All new anticoagulants are all quite new, dizziness, bleeding, tiredness are all classic symptoms of the pills. But I changed when symptoms of dizziness were too bad, (there are options)

Crap isn't it but I should be off them in 6 months, when on them a clot is unlikely so nervous even to come off. Exercise is good for us. Not sure how much.

I don't blame you, get stronger and get your head round it all but do it!

I have to stall my race, but like you I will do it. You are prompting me to find a challenge for this year.

I'm told 'don't fall over and/or don't bang your head'.... Do you know how much of a fall or bang can make a difference??

I do go on as normal but still think something is going to happen... Do you!

Beth

hi,

the doctors need to sort out the basics first, otherwise it might get worse, overlooked, spriral and be disconnected over time. no shame going to doctor or asking for help. we're human after all.

Hi Beth, I'm glad you had a good experience at the respitory clinic. Information is Power (plus we need a professional to take an interest in us occasionally

I didn't think I'd struggle mentally post PE but my emotions have been all over the place. One day I feel well and I'm really positive and the next it's a bit of a crash. I must be driving my family and work wild - it's even been difficult to come to a conclusion about when to start work. I'm giving it another month before I go back so I can let my body recover more.

I'm fortunate though as I don't feel physically fragile. I've seen both my sons just carry on as usual while on these anticoagulants. My eldest is in Madrid this weekend, was up in Scotland watching the rugby a couple of weeks ago and I had to tell him off for zorbing at a stag weekend last week! My youngest works as a trainee paramedic and was recently assaulted by one of his patients while he was trying to treat him. They don't seem to let their clotting issues get to them and I'm also trying not to.

It may be that actually knowing what the PE's felt like might be holding me back a bit or I may just feel closer to the line.

I'm not going to worry too much about falling over or hitting my head. It didn't happen very much pre my PE. I believe I'm in most danger sitting and not moving for long periods with my feet on the floor so I'm trying to reduce the amount of time I do that. 

I am being a bit more careful though. I plan to ski next winter instead of snowboarding and I've already agreed to be taken off front line duties at work. I also don't have to do defensive skills training as there's a high risk of being hit.

im changing to Apixiban shortly and having my nose cauterised as it keeps bleeding.

but I'm feeling ok today.

how are you? 

Hi Steve,

Unless you need it for some other reason too, I would hold off having your nose done until you have stopped taking the Rivaroxaban. I was on Rivaroxaban and had bleeding daily. When I came off it, the bleeding stopped.

Peter

Thanks Peter, I'll put the dr's appointment for my nose back a bit and see how the Apixiban goes.

thanks for your advice.

i still haven't started Apixiban yet as the label says to take two tablets two times a day for the first week and then one tablet twice a day afterwards. I'm not sure the dr has interpreted this correctly so I'm only moving over once I've checked at my appointment with the Haemotologist 

Hi Steve

I am feeling ok. 

I so know where you are coming from.  Generally I am very healthy but this did hit me hard mentally, physically I am doing good. I kept talking about it too - there is only so much anyone wants to listen to. Every chest pain I thought it was a heart attack, dizzy spells I was heading for a stroke - ridiculous.

I have taken the route of a complete career change,  I am lucky to be at a stage where I can do that.  Starting work has also helped me but not full time.

My side effect of minor dizziness is far simpler than your bloody nose.  I have chest x-rays and ultrasound tomorrow so hopefully this will show repair where I had damage.

I think I will ask for a CT scan before they take me off the tablets, just to see if the clot has gone.  I may have to pay for this but for my mental welfare it will be worth it. 

Are you still on the treadmill?  I have booked a personal trainer just for a short time, I need some guidelines but I want to feel stronger as I know it helps me.

Your sons have the right idea, life is for living but you have the added stress of worrying about them and you. 

Let me know how you are doing.

Beth

Are you back to exercising fully yet?  

 

Hi Beth

I've taken my last Rivaroxaban tablet today after just over six months on them. When I saw the consultant haematologist at the beginning of March she said that it is not usual to repeat ct scans before coming off the medication. It is more normal to take a repeat ddimer to see what the results are as you can get an accurate reading and result whilst still on rivaroxaban unlike certain other medication. I thought I'd mention it in case they say you don't need at ct. Also ct scans will still show old scarring from previous clots and you are unable to decipher what is old and new.

I admit I am very anxious for the next few days and worried what the months ahead hold and whether the clots will return. However I shall take every day as it comes.

I feel much better than I did and know that it is a slow process and I try to think on the positive.

Good luck with the docs and your tests.

Sam

Hi Beth, I'm exercising. Not as quickly as before my PE but it feels lovely to be able to do something again. I've been on some parkruns with my wife - they are a really good way to exercise as all abilities go run/walk/crawl round a local park - our one is in Maldon, Essex. Is there one near you?

i did go on the treadmill this morning. I use a heart monitor watch to make sure I don't overdo it and just jog/walk/run to how my body reacts. 

I do feel tired the next day though 

Hi Sam

Good luck with the future, not that you need it, I am told the majority of people who are unlucky enough to get a clot only have one and are not troubled again.

My clot never did show on the blood test which I believe is what you mean by the ddimer.

I will be in your shoes in three months and I know I will feel just as nervous.

i will get advice the the scan🙄

Good luck Sam, let me know how your doing and how you feel.

Hi, I am not sure if we have park runs I will make some enquiries. I am doing quite a lot already, the consultant said to carry on as normal so I am just getting on with it now the discomfort has gone.

i know I will worry once off the tablets but I have to stop worrying as pointless.  in all respects I am feeling a lot better and I hope you will soon. 

Hi Steve

i was wondering how you are doing?  Has the change of tablets improved things?

 

Hi Beth, thanks for asking. 

I haven't moved on to the new medication. My doctor prescribed the wrong dose and I questioned it with the Haemotologist I saw last week. I,have to stay on Rivaroxaban for three months post PE then move to a lower maintainance dose of Apixiban (apparently). 

Ive been referred to ENT regarding my nose bleeds.

things are ok. Not great as I haven't really improved over the last two weeks and my leg has been hurting so I feel like I've gone back a bit. I have an appointment for surgical stocking fitting this week.

But although I didn't get on well with the haematologist I did get some info from her. I looked at my CT scan (I didn't really understand it and should have asked for the CT report. I,asked why I had felt sick after every meal when I had my PE's (for a couple of months) and she explained that blood is sent to the stomach to digest a meal and I struggled to cope with the low oxygenated blood I had left. Hence the headaches and nausea. I asked why I felt sick bending over when I had the PE's and she said my lungs oils have been in trauma and the pressure of the other organs leaning on them would might have been the issue.

so I have a few more answers.

im still not back at work yet and I see my force medical officer this week to discuss going back early next month. I have to jump back on real life soon.

anyway - sorry about the long post

how are you? 

I meant lungs would have been in trauma (not lung oils) not sure how that happened😊

Hi, generally I am good however on some occasions I feel mentally unstable, inside scared and fragile... That is mainly when I feel scarily dizzy !  That makes me sound a wreck but I seriously am not and I rarely discuss it even though I have fantastic support.

I feel better now I am working regularly, medical worries disappear from the mind however I do feel extremely tired which for someone who worked long hours with call out is odd to understand.

Go back to work in slow stages, there is no hurry but I have found it has made me feel normal . My consultant said exercise is gonna be good so keep yours up.

No updates on my X-Ray or scan

good luck with recovery

 

Hi Beth, the medical officer and I agreed that I will start beck at work at the end of next month. He took a bit of convincing and is still worried about my ability to work at my previous capacity. I'm really lucky to have support at home as well as work. I've been taken off front line duties and on call duties as well. It is a double edged sword as you say. I was used to a certain level of responsibility and it's been hard to let it go but it's best for the moment and I'm only looking a month ahead work-wise at the moment. I amy be capable of more later - I still get tired not doing very much at all 

I think it's getting better though and occasionally reflect on how ill I,felt a few months ago.

i feel quite lucky and I'm enjoying a few things that I took for granted before.

Is it too early for you to start badminton again?