Newly diagnosed with Lupus Anticoag - can I still go diving (Have PADI diving qualification and only go to 18 metres)?

[chrissybell]

I am aware I am going to have trouble getting travel insurance anyway - but if I can I wanted to know whether I can or not?

[MaryF Administrator]

Hi there, you need to bring this up with your medical consultant and GP, who can ascertain how stable you are on your medication and health in general, I can't answer that question for you, however lots of us on here live our lives to the full, despite the various challenges. Let us know that you are advised, as it is useful to know for all of us. Best wishes. MaryF

[chrissybell in reply to MaryF]

Will do.

[Manofmendip]

As my colleague, Mary, said you must take this up with your consultant, as we are not medical professionals on here.

Dave

[chrissybell in reply to Manofmendip]

My GPs are professionals (the 6 I work with) but it seems there are not many specialists! - I have a reasonable link with London Bridge Hospital so may look into getting a referral - I'm more concerned re my 3 kids - is it genetic? - one of my GPs says blame your parents. My daughter already has ME/CFS - is this related? etc etc. I will write all down. I shall let you know any pertinent replies and I will seek a specialist if I need to! So far my consultant has been hit and miss (the haematologist) the PE clinic consultant has been fab - but obviously not really now a chest physician issue! Will update as I find answers! Been on Dabigatran for a year and no health issues to speak of so hopefully will continue as is and keep taking the pills to keep me alive!

[Suzypawz]

Yes it is something you will have to talk with your consultants about...many of us still try to carry on with our 'normal' lives doing what we love, I know some that still work as before...that's not an easy task in itself!! I myself am self employed so I can work around good days bad days.

Some go walking, still climb, ride bikes.....I'm a strong believer in staying as active as is possible for the individual is better for them anyway mentally & physically.

All the best, hope you get the answers you want from gp's

[chrissybell in reply to Suzypawz]

Thanks Suzypaws - I'm not contemplating leaving my FT job - and I assume I've had this for a while. I just want to continue as was (maybe lose a bit of weight - as that would be beneficial!) and 'carry on'. Saying that I must get away from work now as I have an 'improv' class to attend. But thanks for the positiveness!

[brewdude6]

I became PADI certified while being positive for LA. If you already have the certification you just need to talk to the people caring for you to clear the activity. I completed my PADI paper work health questionnaire with the dreaded "have you had clotting disorders" question. I had to do the same and have my Dr. sign off on me diving. I can't think of a good reason not to dive while being LA positive especially if you are therapeutic on medication.

[Lure2 in reply to brewdude6]

My question/reply 2 min ago was meant for you. Sorry!

Kerstin

[Lure2]

Did this Dr know about APS? I mean was it an APS-doctor? Who diagnosed you?

I have APS and Lupus Anticoagulant and my heart/lung are affected from APS. .

This is a tricky illness that can sometimes hide away Hope someone else on this site can answer you also.

Best wishes for a good solution from Kerstin in Stockholm

[brewdude6 in reply to Lure2]

Hi Kerstin - I intended to respond to chrissybell in my post but I clicked the wrong reply button. When you say your lung is affected I'm assuming you mean that you have a chronic clot? I do as well..I have also had 2 PE events. LA was diagnosed by a top hematologist in my area. I don't let it stop me and have been assured by him that I shouldn't let the condition define me. Compared to other activities I do I consider scuba to be very low risk.

[tim47]

As well as talking to the professionals as everyone advises, you might also discuss whether you might be one of the 20% of the population who are thought to have a hole in the heart. I have Hughes (and am LA+) and it transpired my stroke and TIAs were probably, in a significant part, down to having a hole in the heart (patent foramen ovale/PFO) which has subsequently been closed. I also had a history of PEs. I mention this because I was told that normally a PFO doesn't impact on people's lives, unless they may have Hughes or be divers! It isn't easily diagnosed- may need a TOE exam, but depending on your circumstances, it may be as well to raise the question.

Isn't the jury still out on the heriditary question?

[chrissybell in reply to tim47]

Cheers tim47 - I've had loads of echocardiograms - would this not show it up - have always been pretty healthy and was still at work the day I was diagnosed with the multiple PE's on both lungs and the pleurisy (Did stagger into hospital once one of my GPs said I had to go!) Will speak to consultant and see what happens - not going to Spain until end August so (cross fingers) and see.

[aamon in reply to tim47]

Why does a PFO affect you if you are a diver? I have both a PFO and Hughes and am keen to dive!

[chrissybell]

I was put on dabigatran - and do know it's unlicenced (the rep for the drug keeps telling me) as I was very unstable on warfarin. I'm far likely to stay well on it than warfarin. It's taken 18 months with the GPs I work with pushing for me to have the thrombophilia testing done, if not I wouldn't even know I had APS. I see the haematologist next Monday and will see what he says - he's the one who wasn't keen on even doing the testing! - and then will discuss with my own GP whether he'll refer me to a specialist (working in the game is where I already know a lot of the London Bridge Hospital staff), so may be able to get a referral there! - I take each day at a time and if I have to give up diving - well so be it. I will ask about the heart - BUT I have had 4 x echocardiograms - and all have been perfect - due another in November - and as I had 3 kids etc with no issues I feel it's probably not an issue, but will ask. Thanks for all the replies. Will update once I've had some answers.

[Whaam68]

After an unprovoked PE 3 and a half years ago & subsequent Antiphospholipid diagnosis I was eventually put on warfarin for life. Being an active technical diver I took advice from a diving doc & was told that if I chose to continue my diving would be severely limited. It's the anticoagulation medication that is the problem as it's contraindicated with DCS (the bends). Even a mild bend is more likely to end in a bleed & paralysis...at least that's what I was told. Insurance might also be an issue. As virtually all of my diving was deep I had no choice but to sell my closed circuit rebreather & a ton of kit. A very sad day for me. I would consult a specialist diving physician & see what they say.

Mike

[tim47]

I cannot give a definitive answer on such a question. All I can tell you is that I was told that most people can live a normal life with a PFO and never know they have such a problem. The exceptions, that I took notice of the mention of, were divers and those with Hughes. As I understand it diving puts extra pressures on your heart.

I had countless heart exams before a stroke doctor arranged for me to have a TOE in 2009. I can recall vaguely, many years before having the inspection where they pop a camera in and have a look around the heart etc. The radiographer was a pal of mine but I declined his invitation to watch his probings on a TV. Despite all the tests he and others did, and they were many, a PFO went undiagnosed for decades (well sixty odd years). Thankfully the equipment moves on and sees what was not visible in the past. I was sedated for the TOE (Trans Osophageal Exam?)

What whaam68 makes sense to me.#

Best wishes