Diving with a mild bleeding disorder

[1000rosie]

Hi there, I’m based in the UK and have qualified as a PADI rescue diver in the past. This involved 100+ dives on air including deeper recreational dives all completed without any problems. I’m looking to return to diving and try tec diving but am having problems with medical clearance.

I have mildly low levels of a clotting factor in my blood called VWF (Von Willebrand Factor). The levels fluctuate due to the type of factor it is, sometimes it’s been measured as normal without treatment. Other times it’s borderline low but not low enough to for me to be diagnosed with type 1 VWD (Von Willebrands disease). I’ve been told that my diving should be depth limited to 20m and also time limited!

Spinal DCS can involve bleeding into the spine and the diving doctor stated that my bleeding disorder could make this worse and increase the risk of paralysis. Their view was that if there’s a risk it’s better for me to be out of harm’s way. However, I participate in other higher risk sports like martial arts and rock climbing. My Haematologist supports me in this and would also support me skydiving as my clotting is near normal.

Therefore restricting my diving so much seems disproportionate, especially because now people with bleeding disorders are encouraged to participate in sport rather than being wrapped in cotton wool. I’ve also found a post on here from a tec instructor with type 1 VWD so opinions do vary! https://www.scubaboard.com/community/threads/diving-with-platelet-disorders.588904/

Please post on here or DM me with

• Your views and experiences of diving with a bleeding or platelet disorder
  
• Is there any research on the increased risk of complications from spinal DCS in bleeding disorders. What’s the relative/additional risk?
• Is there research on using the drugs for VWD that promote clotting either as prophylaxis when diving or to reduce bleeding in DCS/barotrauma?

Info from the UK indicates that the majority of people with mild bleeding disorders are never diagnosed (around 1% of the UK population) and around 2.5% of the population are thought to have clotting factor levels similar to mine. Blood testing isn’t a requirement for recreational diving medical. So restricting my diving just because I have a diagnosis seems unfair

What are your thoughts please? Sorry for the mammoth post!

 

[Searcaigh]

Hi Rosie,

Welcome to ScubaBoard.

While we wait for a professional medical response, are you on treatment for your disorder? i.e. transfusion of FVIII/VWF

 

[BoundForElsewhere]

While I can't offer any advice in particular, I will say that only you can make the decision as to what risks you are willing to take and the consequences with which you will live.

Follow your bliss. It belongs to you and you alone.

 

[Pearlman]

I would imagine a Dive Insurance company has to be ready to insure you for DCS or related complications - knowing your history?

 

[Duke Dive Medicine]

Hi there, I’m based in the UK and have qualified as a PADI rescue diver in the past. This involved 100+ dives on air including deeper recreational dives all completed without any problems. I’m looking to return to diving and try tec diving but am having problems with medical clearance.

I have mildly low levels of a clotting factor in my blood called VWF (Von Willebrand Factor). The levels fluctuate due to the type of factor it is, sometimes it’s been measured as normal without treatment. Other times it’s borderline low but not low enough to for me to be diagnosed with type 1 VWD (Von Willebrands disease). I’ve been told that my diving should be depth limited to 20m and also time limited!

Spinal DCS can involve bleeding into the spine and the diving doctor stated that my bleeding disorder could make this worse and increase the risk of paralysis. Their view was that if there’s a risk it’s better for me to be out of harm’s way. However, I participate in other higher risk sports like martial arts and rock climbing. My Haematologist supports me in this and would also support me skydiving as my clotting is near normal.

Therefore restricting my diving so much seems disproportionate, especially because now people with bleeding disorders are encouraged to participate in sport rather than being wrapped in cotton wool. I’ve also found a post on here from a tec instructor with type 1 VWD so opinions do vary! Diving with Platelet disorders?

Please post on here or DM me with

• Your views and experiences of diving with a bleeding or platelet disorder
  
• Is there any research on the increased risk of complications from spinal DCS in bleeding disorders. What’s the relative/additional risk?
• Is there research on using the drugs for VWD that promote clotting either as prophylaxis when diving or to reduce bleeding in DCS/barotrauma?

Info from the UK indicates that the majority of people with mild bleeding disorders are never diagnosed (around 1% of the UK population) and around 2.5% of the population are thought to have clotting factor levels similar to mine. Blood testing isn’t a requirement for recreational diving medical. So restricting my diving just because I have a diagnosis seems unfair

What are your thoughts please? Sorry for the mammoth post!

Hi @1000rosie ,

Severe spinal cord DCS can lead to punctate hemorrhages (small points of bleeding) in the spinal cord. A hypocoagulable state could theoretically make these worse, and I'm guessing this is what the diving physician who evaluated you was concerned about. However, given that your haematologist is ok with you engaging in other high-risk activities that present a higher risk of injury, it might be reasonable to seek a second opinion from a diving physician who is comfortable with a less proscriptive approach.

Best regards,
DDM

 

[BoundForElsewhere]

Hi @1000rosie ,

Severe spinal cord DCS can lead to punctate hemorrhages (small points of bleeding) in the spinal cord. A hypocoagulable state could theoretically make these worse, and I'm guessing this is what the diving physician who evaluated you was concerned about. However, given that your haematologist is ok with you engaging in other high-risk activities that present a higher risk of injury, it might be reasonable to seek a second opinion from a diving physician who is comfortable with a less proscriptive approach.

Best regards,
DDM

does skydiving count as a "high risk of injury" activity? I kind of feel like the odds of being injured are pretty low.

 

[tbone1004]

@1000rosie I was the diver you referenced from the other thread. @Duke Dive Medicine have cleared me to dive at many different points over the years and I have been involved in several of their studies. One of their snarky doctors who is now back with the Canadian Army and I have a running joke about me not being fit to dive that is shared with the guy who made the post above, but she has signed my medicals at least twice, and he has taken blood from me several times with no issues.

The risks of getting seriously cut underwater are pretty small, and if you actually get severe spinal cord DCS then IMO you have FAR bigger things to worry about that almost being diagnosed with a blood clotting disorder....

 

[1000rosie]

Thanks everyone for your replies! @tbone1004 you are my inspiration as I may not have pushed for a second opinion unless I knew it could be done. @Duke Dive Medicine I’m just trying to understand and quantify what the risks are so that I can make an informed decision. Is there any research in this area? @Searcaigh I don’t need any routine treatment just cover with Tranexamic acid +\- DDVAP for surgery or serious injuries. Yep, my driving can get a bit GTA at times @BoundForElsewhere so skydiving and maybe BASE jumping seem pretty mild by comparison....

 

[Duke Dive Medicine]

Thanks everyone for your replies! @tbone1004 you are my inspiration as I may not have pushed for a second opinion unless I knew it could be done. @Duke Dive Medicine I’m just trying to understand and quantify what the risks are so that I can make an informed decision. Is there any research in this area? @Searcaigh I don’t need any routine treatment just cover with Tranexamic acid +\- DDVAP for surgery or serious injuries. Yep, my driving can get a bit GTA at times @BoundForElsewhere so skydiving and maybe BASE jumping seem pretty mild by comparison....

Hi @1000rosie ,

It's all animal research. Here's one:

Decompression sickness in the goat: nature of brain and spinal cord lesions at 48 hours - PubMed

Note that the goats were compressed to 100 feet for 1 hour and decompressed over 2.5 minutes.

Best regards,
DDM

 

[tbone1004]

Thanks everyone for your replies! @tbone1004 you are my inspiration as I may not have pushed for a second opinion unless I knew it could be done. @Duke Dive Medicine I’m just trying to understand and quantify what the risks are so that I can make an informed decision. Is there any research in this area? @Searcaigh I don’t need any routine treatment just cover with Tranexamic acid +\- DDVAP for surgery or serious injuries. Yep, my driving can get a bit GTA at times @BoundForElsewhere so skydiving and maybe BASE jumping seem pretty mild by comparison....

I take DDVAP prior to surgeries and in respones to major injuries *which for me tend to go hand in hand*, but I do not take anything regularly. My entire family on my mothers side all have VWD so it's not like I am an isolated incident. Both brothers, mother and her 2 sisters, her mother and I think 4/7 of her siblings, etc. so we've been dealing with it for a while.
It is on all of my diving medicals and no one has ever batted an eye other than asking if I take regular medication for it.

What @Duke Dive Medicine linked is important to pay attention to, but again and it should be HEAVILY emphasized that that level of DCS is extremely rare and requires MANY things to go wrong.
Roughly speaking 100ft for 20 mins is the max recreational limit so you have tripled the time at depth. A normal AL80 will only last a normal diver about 30 minutes at 100ft, so you'll have to have at least 2 tanks to stay down there that long, so you've already seriously violated all sorts of recreational limits just by staying at 100ft for 60mins.
A recommend ascent from 100ft would take about 3 minutes at the minimum, so the ascent time is fine, but there were no deco stops. I don't have a planner with me, but they would have blown at least 20 minutes of mandatory decompression on the way up.

The risk of you ever experiencing that is essentially 0 with normal recreational diving, and again, if you have spinal DCS, you're going to be far more worried about permanent paralysis and the other complications than some extra bleeding...