Scuba & MF while on Jakafi?

[socrates_8]

Hey guys...

Here's an interesting question for some of you to ponder...

I have decided that life might be even shorter than I had originally perceived , due to my MF diagnosis of course.

Since having commenced my new fitness regime, my endurance levels have become somewhat better, however, in all honesty, I do tire quickly thereafter.

However, diving, is largely a serene sport that does not require the same types of physical exertion as cycling, for example. Yes, that is obviously a generality...

I am considering trying to do my Open Water Dive Certificate, and I was wondering if anyone here has ever attempted to do so... Or should I just give on that notion altogether as being far too adventurous...?

Life seems ever more shorter, and in many ways I have been more fortunate than many. As I once learned to free-fall skydiving (amazing experience), I have surfed, sailed, dived, and absolutely have always been at home in the ocean...

I am reading up and seeking advice from many quarters, however, MPN Voice, seemed like a very good place to start this next research project...

Thanks guys...

Steve

(Sydney

[Aime]

Sorry my water ability is restricted to Pilates in a hydrotherapy pool and I can swim breaststroke but prefer to stay above the water! Maybe a good idea to check with your medics first but otherwise go for it!! None of us (MPNs) or not know how long we have on this earth, so follow your heart ❤️ and do what you want to do!! Kindest regards Aime xx😺😺

[socrates_8 in reply to Aime]

Hi Aime...

Thank you for your reply.

Yes, I will not be irresponsible, however, if it is possible to find something that I can get into and really enjoy participating in... then why not? It would of course be more of a seasonal pursuit.

Thus far, I have read a few things about 'Absolute & Relative' Contraindications concerning scuba diving and my condition (MF). At the present, my high blood pressure does not exist, and I have not suffered any bleeding gums or blood in the back of my nose for quite some time now...

However, ephemeral the experience might ultimately prove to be... I would still at least like to try before I totally give up on the idea altogether.

Thanks again Aime. I hope all is well in your world.

Steve xo

(Sydney)

[Ebot]

Have no useful advice to give whatsoever but really hope you find the advice and reassurance you seek and realise your ambition!

[socrates_8 in reply to Ebot]

Cheers Ebot... thank you for your moral support... Cool.

Steve

[scousesbird]

Hi Steve, I love your attitude to get out there and do everything you want to do.

My husband has PV and has a very negative approach. He is a Divemaster/Master Scuba Diver. He has been told he cannot ever dive again which is has been hard for him to grasp.

He wants to do one last dive........

Have you spoken to your consultant about this?

You may be able to do perhaps do open water because you only go to about 9 metres I think.

Good luck with your quest!

[socrates_8 in reply to scousesbird]

Hey Scousebird...

Thank you for your message. I do understand your hubby's predicament...

12m I believe it is for one's Open Water Certification.

No I have not spoken w/ my consultant at this stage. I merely started out by doing some research, and it seems depending on my own overall level of health & fitness... It might just be possible... However, early days thus far, and a tad more research before I will begin seriously considering it...

If I can... I will!

Cheers

Steve

[lizzziep]

I hope you can go ahead with your dreams. Me - I don't even get my face wet when I go swimming!

Lizzie

[socrates_8]

Heheeee...

Thanks Lizzie

Steve

[TrickyDicky]

Hi Steve, I looked into doing scuba while on my hols a few weeks ago. When I looked into the details there a medical checklist which included having any blood disorder or taking medication for circulation. The guidance said I'd need a doctors approval to be able to do it as I would be ticking yes for these items.

I haven't looked into any further. Did the PADI intro to scuba course years ago and can see the appeal for wanting to do it. Hope you get the positive outcome you're looking for.

Richard

[socrates_8 in reply to TrickyDicky]

Hi Richard,

Yes, I am in possession of a dive clearance medical check-list, and if I was to answer completely honestly... I believe my quest might be ended before it has even begun.

I have also completed a couple of Intro' Scuba dives, and the last was in Vanuatu in 2006. Where even though my certificate states a depth of 12m, we actually went to 20m. However, there were no problems at all, and just for safe measures we waited and decompressed a little longer, just to be safe etc...

In some ways I am fitter now than I was in those days... However, I possibly also had this condition at that time too, and I was just unaware of its existence. I believe that many of us here were all walking around blissfully unaware of our MPNs for years before receiving our diagnosis. That statement is certainly factual in my own instance in any event.

Like Chris has reiterated below, we all need some sort of pursuit to engage ourselves in because otherwise it becomes increasingly difficult to thwart chronic bouts of depression.

Nevertheless, I am not mindless suggesting that we should all just say: "...damn the torpedoes & full steam ahead..."

All of life is about creating some notion of a calculated risk.

Even when I was doing my skydiving free-fall (FF) course all those years ago... I did so knowing that as a 'Tandem' jumper I am hooked up to an instructor w/ one main & one reserve shoot. However, as a FF student, I have two shoots, plus two instructors who accompany me that also have two shoots each. Hence, my safety factor was increased some 200%.

In this instance, (scuba), first I will make sure I am as fit as I can possibly make myself. Second, I will practice snorkelling & shallow diving for a month or two before hand. Before finally endeavouring to undertake my Open Water...

Well... this is my plan thus far in any event...

If after all of that I find that for any reason I am physically not able to manage any type of adverse experience/symptom or side-effect, I shall cease my attempt at undertaking the Open Water Dive ticket.

In many ways, diving is like a form of the most serene form of meditation. It really is quite an amazing world down there...

Best wishes Richard and thank you for your input.

Steve

[JediReject]

Hi Steve my Antipodean friend, you hide your light under a bushel it seems, mind you its just what I'd expect from an Aussoie so I shouldn't be surprised at your list of talents. The thing is in spite of your MF and Jakafi you are starting from a point that it would take me months or years to get anywhere near.

You know that you ought to run with it as not only is it something you want to achieve it will give you a focus and drive you forward. We need these milestones in our lives . By coincidence I'm actually lacking one at present and it feels like I'm drifting along without purpose , only hospital visits, shopping and sleep.

Do all you can to make it happen Steve. And good luck.

Cheers Chris

[JediReject in reply to JediReject]

Should read 'Aussie' obviously, Aussole sounds like a posh insult !!

[socrates_8 in reply to JediReject]

Are you a posh pom then? I had no idea...

Cheers mate.

[socrates_8 in reply to JediReject]

Hey Chris...

Great to hear from you too my Antipodean friend.

You have hit the nail on the head, metaphorically of course...

I too feel like its impossible to do almost anything. My diagnosis prevented me from being posted abroad, (as you might recall), to commence a new career after five solid years of study at university... I was so incredibly depressed for so long after that.

I do try to study whatever I can, whenever I can because learning anything really helps to occupy my mind. And helps me too w/ my failing memory. However, I definitely need to cultivate other pursuits too...

I shall not be too rash in this pursuit, as I have reiterated above to Richard. If after all my preparation I find that I might be placing myself, and even others at risk... Then of course I shall reluctantly withdraw from my quest. Perhaps, snorkelling will have to be as far as I can manage... (?) We shall see...

I shall keep you posted as to how I manage to progress...

Thank you to everyone for your moral support and advice.

I am most grateful of course.

Best wishes to all...

Talk again soon Chris

[Stevesmum42 in reply to socrates_8]

Hi Steve.

i do so hope you are able to go ahead with your diving dream,( safely of course).

From reading your posts over time you have been thwarted by your condition, re your plans and hopes. So I really hope that you are able to pursue something that will give you much pleasure and fulfilment .I can see the allure of the beauty of the depths.Maybe a bit like swimming with dolphins ?

Your posts are always interesting and informative and so well articulated . So please keep us up to date and very good luck . Best wishes Sandy x

[socrates_8 in reply to Stevesmum42]

Cheers & thanks for your support Sandy...

I'll keep you all appraised of course.

Steve

[linds in reply to JediReject]

Hello Jedi, just had to reply to your comment so please excuse Steve. Don't ever think you are without purpose. Whereas I know what you mean and it is how you feel, you have provided so much humour and support to all of us out here over the many months if not years, we would have been the poorer without you. Your time of fulfillment will come again but you are still climbing that proverbial hill. I don't know where I would have been in my early days without your fun. It was so uplifting.

Linda x

[JediReject in reply to linds]

Thanks Linda I take heart from your kind words that in itself spurs me on. Dont get me wrong Linda I'm just happy to be here after a tricky time, just that I need things to cling on to now that I'm feeling a bit better . But I need to temper it with caution as tidied shed out over last few weeks and after lifting a couple of my heavy toolboxes I tore muscle tissue in right hand side of chest which struggling to heal. Consultant advised my bones still very weak so not to overdo it.

Linda I'm slowly getting my mojo back and with that my sense of humour is evident once more.

Cheers for lifting me up

Chris x

[socrates_8 in reply to linds]

Naturally, I too echo those sentiments from Linds above Chris... hopefully you already know that you have always been a huge inspiration to me personally in my journey.

Interestingly, I also have a 20mm tear extending from the rotor cup of my right shoulder. The physio' said possibly a three (3) month remediation if I consistently undertake the rubber-band exercises, which I am of course.

Are you also undertaking some sort of physio' regime Chris?

Be well my friend...

Steve

[mhos61]

Hope that you're able to achieve this Steve. 👍

Mary x

[socrates_8 in reply to mhos61]

Hey Mary...

Thanks. Me too...

Best wishes

Steve

[Pkm52]

Hi Steve,

I was diagnosed with ET a few months ago and am taking Hydroxyurea. I am sorry your condition has become more complicated.

I'm a nearly retired Nurse Practitioner. Your Hematologist would most likely give you an opinion about scuba diving. If he/she was unsure a Hyperbaric Medicine Physician would most likely comment.

I live in WA State where the water is always around 48 degrees. I got certified in cold water. Cold water dives would be more stressful physiologically. The rest of my dives were made in the Caribbean. Shallow warm water dives were non-exertional, beautiful and serene. Listening to the sound of my breathing was hypnotic. Your physicians have your labs and oxygen saturation levels. There is the "right" answer for you.

I wish you well. Remember, we don't have expiration dates. I have 37 years of seeing cases that were deemed nearly hopeless change on a dime. Your body is full of miracles.

Patty

[socrates_8 in reply to Pkm52]

Hey Patty...

Thank you for your knowledge & advice.

I have completed a couple of dives. Last was in 2006 in Vanuatu. Hence, I am not a complete stranger to the experience. I agree with your descriptions also. Diving can be a most meditative experience indeed. That is precisely one of the reasons that I am hopeful of taking it up again... It is truly a sensational experience is it not...?

As I stated earlier. I am in possession of a 'Dive Medical Application' form, and therefore I am aware that aspects of my MPN condition have 'Contraindications' that would most likely preclude me from participating any further...

Nevertheless, my plan at the present is to become first more involved w/ shallow-diving just using snorkelling equipment. Then via practice, build my swimming capabilities before ever attempting to undertake my Open Water Dive Certification, and only if there are not any adverse affects that might otherwise jeopardise any such action or intent (I have no intention of putting at risk the lives of others, or myself for that matter).

I believe, however, that to volunteer any such information concerning my MPN condition would immediately prevent any such attempt before it could ever commence.

After doing some snorkelling I may well find that any further attempt at scuba is over for me, and I would therefore not pursue this desire of mine any further of course...

For the moment, however, I am treating the attempt as if I have purchased a 'lottery ticket' and I am living w/ the image as if I have already discovered that my ticket was the winning ticket...

Metaphorically of course...

I shall start the theory of the dive lessons today! Reading, videos, and answering short quizzes etc...

The water is still too cold in Sydney for any such attempt at the present. All such attempts (snorkelling) will at first take place in a 'confined' heated pool.

By the way Patty, many years ago I swam in the surf at Cable Beach in Broome (WA), just prior to the commencement of the 'Wet' season. And the ocean was estimated to have been circa 30ºC at that time. More like a hot spa bath than body-bumping in the surf... Awesome!

Thanks again

Steve

(Sydney)