Looking for advice

[viviargi]

Hi everyone,

Hope you are all ok and keeping safe.

Two weeks ago I was diagnosed with Pulmonary Embolism. I'll be under blood thinners for 6months. Even though my left leg is not completely swollen anymore and it's less painful, I have to say that I'm starting to run out of air again. Seems like I was doing good but now this is happening again. So I would like you to give me advice of what kind of specialist I should visit since I'm thinking to book an appointment with a private doctor. This is all new for me and have no idea what kind of doctor I should look for. Anyone who can help me with that?really appreciate it.

Best wishes

Vivi

[cheritorrox]

Have you been in contact with your current doctor? It may just be a need to change dosage of anticoagulent? Sorry can't really help as I "only" had a DVT!

[viviargi in reply to cheritorrox]

Thanks for your message Cheritorrox. Actually the anticoagulation team will call me in one week time. They will adjust the blood thinners dose. By then I will ask them a million questions. I don't know how to handle and manage this new situation. I know I should be seen again by the vascular team but with all this virus situation things have changed. Seems like they won't see me any time soon.

I appreciate your help

Vivi

X

[cheritorrox in reply to viviargi]

You make a good point about questions - jot them down when you think of them then structure a list before you talk to specialist ... and leave space under each for replies then you can see you've covered everything

[viviargi in reply to cheritorrox]

Thanks

XX

[amhayllar in reply to cheritorrox]

I love your 'only had a DVT' , do did I 13 years ago. Be prepared for some fighting to be heard, it took a long time for someone to listen. I only had two DVT'S and I never got and never will get all the answers. Take care people x

[viviargi in reply to amhayllar]

Thanks for your sharing your experience. Xx

[Hidden in reply to amhayllar]

It's frustrating though nor getting answers!

[AlisonClark]

It's very early days since your diagnosis. I had a PE, and it took months to start to feel better. You need to get your warfarin balance with your needs. Listen to your body and ask your gp or anti coag clinic your questions.

[viviargi in reply to AlisonClark]

Will do! Thanks XX

[Mallard]

Hello Vivi - so sorry you are going through this it’s not a pleasant experience. I had a bilateral PE and parts of my lungs have necrotised (according to the A&E sister) I found the aftercare pretty non existent I’m afraid- I took Warfarin for 6 months and am now on daily aspirin. It was a big deal to me but didn’t seem to be to my GP or the hospital, maybe that’s just my experience. It took at least a year for me to feel normal again - I still get breathless, I’m definitely not as fit as I was but I can’t complain and just get on with it. I hope you find yourself in a good place soon x

[viviargi in reply to Mallard]

Thanks for your reply and sharibg your experience.

Sending you all my best wishes. X

[SpeedyH]

Hi Vivi. There isn’t one specific type of doctor whom I would recommend you see but there a couple of things that should ideally happen once hospitals are making outpatient appointments once again. Firstly, your blood should be tested to see if there is an obvious reason why it clotted. This might be through an appointment with a haematologist. You should also have an ultrasound scan if they didn’t do one, to check that there has been no damage to your heart or residual pulmonary hypotension. They should also do a scan of your abdomen to make sure that there is no cancer as clots can very rarely be caused by that. If they cannot find a reason for your blot clotting you may be on anticoagulants for life.

With regards to the breathing difficulties you are having, they do take many months to improve and even then, I find I am now more susceptible to pollution, pollen, stress and have breathless periods which come and go. The professional I saw who was the most helpful in this regard was a respiratory physiotherapist. It might be worth asking to be referred to one. When we have a serious lung condition like PE we tend to alter the way we breath to compensate for it and when the clots have gone, we tend not to revert back to a good normal breathing technique. The physiotherapist will be able to give you exercises and tips to help get your breathing back to normal. Hope this helps.

[viviargi in reply to SpeedyH]

Thanks for your advice! Definetely will ask for that referral once we are back to normal.

Keep safe!XX

[amhayllar]

I will tell you that the road is long to recovery but with everyone's help you will make it. I get tired still and will continue to. I have post thrombotic syndrome and it is moderate. At some point it was mild but after the original DVT'S I didn't get any follow ups or scans, just the standard take warfarin for 6 months and wear the compression socks. For years I had problems with my leg but I was told I was a worrier by hospitals and drs. It turned out I was not and I only found this out when someone told me on this unlocked site about Guys and St Thomas's Hospital and their vascular unit for the whole country. All it took was a GP referral and when I had my first appointment, I didn't have to explain, the consultant looked at leg through the compression sock and said I can see you have a problem, let's see if we can help you. I came out of that appointment feeling so much better, someone had listened to me, I wasnt going mad but unfortunately because no one had listened from 2007 to 2018 the damage to my leg inside and out, and now my other leg is irreversible and I have a long term medical condition and I am a lifer on Apixaban but finally I am under the care of the specialists, the hospital does research on DVT's and PE's and they are making waves. So stay strong, mentally it's tough but we are all here with you. Take care and good luck x

[gazaeee in reply to amhayllar]

Hiya.

I'm keen to get the best care possible and would love to ask if they have something at Guys and St Thomas's Hospital not available elsewhere?

[amhayllar in reply to gazaeee]

It's a vascular specialist centre and it's the only one on the UK. They also research vascular conditions with a keen interest in DVT'S and PE's and their effects. You only need a doctor's referral.

[viviargi]

I'm so sorry to hear that amhayllar. I wish you all the best in your recovery.

Yesterday I ended up in A&E cause of my breathless. They did a few tests again. The good news is that my lung and chest clots have dissapeared in these two weeks under apixaban. Still have a big clot by my pelvis. Regards to my breathless the dtr told me to rest and take it easy cause my heart rate goes higher and that's why i can't breath. So I spent my day just resting and kind of managed it. At the same time the nurse from St Thomas Hospital told me to move as much as I could cause of my leg. So just trying to do gentle movements and slow walk.

Hope we all can make it and get every day better.

Thank you all XXX