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[Jomomo]

For fear of seeming ignorant,,,,,how many specialists are necessary when you have or have had DT's, Pulmonary Embolisms, and possibly heart failure. I have had PE 5 different times now. Is it important to have a hematologist if you don't need to have IRN levels checked? What role would they play? And a pulmonologist....I don't even know where to begin knowing what help I should be getting. As for the cardiologist. I have had 2 and looking for my third. I feel nothing is being done, (Take Eliquis, Lasix, and Entresto) Go in for check ups every three months. How can a doctor stay on top of your condition just every three months? Some of you may have read my post about I have no faith in doctors anymore. I feel like if I go in for a checkup with history of PE's DT's, and heart failure, and my check-up consists of reviewing my meds, stethoscope, quick talk are there any concerns, then I'm out in 10 minutes.....not to come back for 3 months follow up......How can I know that I'm ok, or I'm being paranoid thinking I should be watched more closely? I really feel abandoned, sitting at home, trying to be healthy, but no real medical support for 3 to 4 months and at the most a 10 minute checkup. Maybe I'm looking for something that I'll never get. But I don't feel just trying to be careful and healthy at home, and waiting for 3 months to see a specialist is enough. Maybe I should ask for referrals to every type of specialist there is that is linked to my conditions so I at least have somebody seeing me often and having a better chance of them catching something unusual before it turns bad.I think that just by writing this, it made a decision for me. I need more doctors, right?

[SpeedyH]

I don’t think you necessarily need more doctors. Here in the UK we have a body called the ‘National Institute for Clinical Excellence ‘ and they have produced guidance on the diagnosis and management of DVTs and PEs. Although you are not in the UK, a lot of it will be relevant to you.

nice.org.uk/guidance/ng158

In the UK, after initial diagnosis and treatment we tend to be ‘signed off’ by any consultants involved in our care and then onwards we see our local doctor once a year for blood tests to check that the medication isn’t affecting our liver or kidney function. (This is different for people on Warfarin who need regular INR tests.)

When a PE is diagnosed we tend to see a general medical consultant who starts the initial treatment regime and then refers us to a Haematologist who checks that the clots weren’t caused by a blood related disorder. We also have an abdominal scan to make sure there are no obvious cancers (which can cause clots). After a few weeks we have a heart/lung scan to check that the heart has not been damaged and that there is no Pulmonary hypertension and to see the progress of the clots. After this we go back to the consultant who refers on to a Cardiologist or Oncologist if necessary. A decision is made on ongoing treatment and we are then discharged and just see our local doctor once a year for blood tests.

The treatment for clots is medication so there is not much else any other doctors can do really.

Rather than see more doctors, you might find it helpful to ask for a referral to see a respiratory physiotherapist. This is because when we get clots sometimes we do not breath in a good way afterwards and this can cause a whole range of symptoms. Having a clot, and multiple ones in your case, is very frightening and can be life changing so you might find it useful to ask for a referral to a counsellor or psychologist who can help you work through any anxiety and PTSD you might have.

I hope you get the help you need, good luck.

[Suebo2 Moderator]

I feel for you and am sad that you do not have the answers that you are looking for. A previous reply to you is spot on with what happens in the uk.

To add:-

More emphasis is now put on the psychological aspect of having both DVTs snd PEs

thrombosisuk.org/

thrombosisuk.org/findevent/...

Please do look at the thrombosis Uk website for some further support.

I would make a list of your concerns and book an appointment with your own doctor to be able to ask the questions.

It really is not possible here to fully address your concerns, as we are not aware of your other (if any ) medical conditions etc that might impact on your VTE outcomes.

Please do look at the Thrombosis UK website.

Take care