Sarcoidosis and diving

[Dr Simon Mitchell]

Hello Mark,

First, sorry to hear about your problem. How frustrating!

Most of what needs to be said has already been said by others with expertise. I have only one or two things to add.

First, I would not expend any energy on wondering about diving and sarcoid. In addition to what the others have said, my observation would be that if there were a causative association between diving and sarcoid then it is likely we would have noticed it by now. To my knowledge there is no signal in either the sarcoid or diving literature that such an association has ever been suspected let alone proven despite the fact that a LOT of people dive.

Second, the Tetzlaff paper you cited is not evidence of such an association, but rather evidence of exactly the risk the others have expressed concern about if someone with obstructing pulmonary sarcoid is subject to a decrease in ambient pressure. The Tetzlaff paper is one of just a handful of reported cases of pulmonary barotrauma that have occurred during decompression in a hyperbaric chamber. Such cases are notable because hyperbaric chamber decompressions are so controlled and so slow (and so the risk of pulmonary barotrauma is very low). Every case, including the Tetzlaff sarcoid case, a case I published, and another from Duke, occurred in subjects with significant pulmonary gas trapping lesions (the other two were not sarcoid). They serve to illustrate how risky obstructing lesions can be, and in diving those risks are magnified because the pressure changes are potentially / usually so much faster.

I agree that you need to give yourself time to recover, and then be carefully investigated. Spirometric indices are not particularly good predictors of pulmonary gas trapping in some isolated segment of the lung (which is all it takes for a problem to arise). A good radiologist will be able to sort that out for you with high resolution CT scanning techniques when the time comes. With a bit of luck you will get back to diving. Fingers crossed for you.

Simon M

 

[stiebs]

Thanks for your response Simon.

Hello Mark,
First, I would not expend any energy on wondering about diving and sarcoid.

OK, done. I will focus my energy on what's ahead, not on what's behind me

Second, the Tetzlaff paper you cited is not evidence of such an association, but rather evidence of exactly the risk the others have expressed concern about if someone with obstructing pulmonary sarcoid is subject to a decrease in ambient pressure.

Yes, I understand that the Tetzlaff paper is evidence of the risk of a pre-existing condition, and does infer a causal effect in any way. My point on the that paper was simply that almost all references to diving and sarcoidosis together refer to that single paper. I do not have the same knowledge of or access to the medical papers or journals that others do, but to me the lack of other papers indicates limited research in the area.

I agree that you need to give yourself time to recover, and then be carefully investigated. Spirometric indices are not particularly good predictors of pulmonary gas trapping in some isolated segment of the lung (which is all it takes for a problem to arise). A good radiologist will be able to sort that out for you with high resolution CT scanning techniques when the time comes.

And this is the part that I'm really struggling with... Ie, finding a good radiologist. How do I know?! My rheumatologist simply said "don't dive". Alfred Hyperbaric said see a diving doctor. The diving GP I saw said wait for my CTs to come back clean.

My radiology request forms for CT and XR have stated "sarcoidosis?" under the notes section. I read the radiologists notes last week when I saw my physician last week, and (forgetting the clinical descriptions) the stated that there was still some evidence of inflammation in my lymph notes, but no inflammation or scarring evident in my lungs.

As I mentioned previously, I think it would be prudent of me to wait for a period of time after stopping all treatments (ie, predisolone) before a HRCT to be evaluated for diving fitness. But should that be through my rheumatologist, my GP, a diving GP, or a pulmonary specialist. Or should it not matter?

I absolutely want to get back diving as soon as safely possible.. but given the potential risk, neither do I want to so prematurely.

 

[sheeper]

I would certainly suggest that a pulmonary specialist would be the point person for sarcoid. Depending on your medical history, additional specialist confirmations of diving fitness would be in order.

In my case, my pulmonologist is also my GP. And with my physical this past week, I continue to show above normal lung functions and no evidence of sarcoid or scarring. Thus far it's 8 years that I've been free of any signs or symptoms \. So continue to be optimistic!

 

[lowflyer]

The reason that a rheumatologist or clinical immunologist might also be involved is that they are generally more familiar with other agents in treating autoimmune diseases. Such agents are useful when steroids don't do the job or when one wants to be able to reduce the dose of steroids to avoid the side affects of them. A pulmonologist is definitely the guy to evaluate the status of the lungs and may be up on steroid sparing therapy.

 

[Dr Simon Mitchell]

And this is the part that I'm really struggling with... Ie, finding a good radiologist. How do I know?! My rheumatologist simply said "don't dive". Alfred Hyperbaric said see a diving doctor. The diving GP I saw said wait for my CTs to come back clean.

Hello Mark,

Actually, most of them are pretty good. The problem is usually a lack of clear communication from the referrer to the radiologist about the specific nature of the question to be answered. For example, when the time comes, the doctor referring you for the CT needs to clearly articulate the reason for the investigation. Just saying "sarcoid" won't be enough. There needs to be a clear statement that the primary reason for the CT is to look for any evidence of obstructing lesions or gas trapping. Sometimes this can involve doing two runs; one with you holding your breath in, and one with you holding your breath out.

Andrew Fock at the Alfred is a colleague of mine (an anesthesiologist) who is also a tech diver. He would be a good resource if you need one.

Simon M

 

[stiebs]

...I continue to show above normal lung functions and no evidence of sarcoid or scarring. Thus far it's 8 years that I've been free of any signs or symptoms \. So continue to be optimistic!

Great to hear that @sheeper. I hope to report the same before too long

The reason that a rheumatologist or clinical immunologist might also be involved is that they are generally more familiar with other agents in treating autoimmune diseases. ... A pulmonologist is definitely the guy to evaluate the status of the lungs and may be up on steroid sparing therapy.

When I first started showing auto immune indicators my GP sent me in the direction of a rhuematologist. I actually have an appointment with him again this week to renew the referral to my treating physician, so will also talk to him about seeing a pulmonologist.

Hello Mark,

Actually, most of them are pretty good. The problem is usually a lack of clear communication from the referrer to the radiologist about the specific nature of the question to be answered. For example, when the time comes, the doctor referring you for the CT needs to clearly articulate the reason for the investigation. Just saying "sarcoid" won't be enough. There needs to be a clear statement that the primary reason for the CT is to look for any evidence of obstructing lesions or gas trapping. Sometimes this can involve doing two runs; one with you holding your breath in, and one with you holding your breath out.

Andrew Fock at the Alfred is a colleague of mine (an anesthesiologist) who is also a tech diver. He would be a good resource if you need one.

Thanks Simon, I've taken that down and will make sure that evidence of obstructing lesions or gas trapping is specified on the radiology request when the time comes.

When originally looking through the SPUMS list for a diving doctor, Andrew Fock certainly came up and from my light research looked to be someone that could help me out, hence my call to the Alfred hyperbaric earlier this year. When I spoke to them the recommendation was to see a diving GP, who would refer me to the Alfred if needed.

 

[ladabiel]

Hi Mark,
I hope that things turned to better course. I think, that the first step is to achieve remission with step down decreasing dosing of prednisolone. Very important is, which form of sarcoidosis do You have, which I didn´t find. Personally, until this point, I wouldn´t dive. In my country, there is one proverb (maybe in Your country too): Nothing gets eaten as hot as it gets cooked. After achieving of remission and with agreement of Your physician I´m sure, that You will dive again, but I think that You should avoid to dives, that would increase Your ppO2 (deep dives or Nitrox), because of extreme proinflamatory effect of such dives, with accelerating of changes of lung interstitum (and one of signs of sarcoidosis is damage of lung interstitum) and worsening of inflamation. But I´m not specialist in lung medicine, but in general internal and cardiology, so best thing is ask pulmonologist or rheumatologist.
How I write, I´m sure everything will be ok. Good Luck.

Regards.

 

[stiebs]

Well it's been around 7 months since I was first diagnosed, and about 5 months since my last post here. I had a CXR last week, and finished weaning off prednisolone on the weekend. Based on all the tests and CXR which came back all clear, my physician is happy to report that I'm now in remission. Woohoo!

At my request, and on recommendation from @Dr Simon Mitchell she has issued me with an imaging request asking for an HRCT checking for obstructing legions and gas entrapment. So now I'll leave it another 4-6 weeks after coming off the prednisolone before going in for that CT and hopefully get the all clear for diving once again.

If that comes back clear, from what I've read its a pretty good result being able to get back to diving within a year of diagnosis.

 

[stiebs]

It's been hard not to think about diving... and I've had to stay away from SB to keep me sane.
Over 10 months since being diagnosed, I've been off the prednisolone for a few weeks and if all goes well I should have the all clear to hit the water again just as the Australia summer rolls in.

Just had my HRCT and did a spyrometry and mannitol challenge, plus a DLCO (gas transfer) test. Spyrometry looked good with a 116% baseline, dropping to about 114% after the strongest mannitol dose.
Didn't get the numbers for DLCO, but the person doing the test said it came up normal.

Hoping now that all the results make it back to my diving GP, get an appointment for next week, followed by an all-clear to get wet again.

 

[lowflyer]

Best of luck getting back to diving, mate!