Sarcoidosis and diving

[stiebs]

So I understand that sarcoidosis and diving shouldn't really be spoken in the same sentence without a "don't" in there somewhere. So I'm reaching out to the scubaboard community for anyone who may have had some experience with sarcoidosis.

After a few years diving hiatus (family et al) I've got all my gear back into service and started to get back into diving, remembering just how much I miss it. Then in the past couple of weeks I've been struck down by what has turned out to be sarcoidosis.

Fortunately (I think), I have not shown any lung related symptoms such as shortness of breath or coughing, although chest xrays and CT scans have shown some lymph and lung abnormalities. My physician has pretty much stated "you have a lung disease, quite simple, don't dive".

I have an appointment with a diving physician next week, so will hopefully start to get a better expectation of my long term prospects of being able to dive again, but in the meantime, hoping someone out there with a similar experience can share...

 

[Duke Dive Medicine]

Not much to add to what your physician said. Do you understand the rationale behind the recommendation not to dive?

Best regards,
DDM

 

[fmerkel]

Done any personal research on the problem? Certainly worth spending some time doing that.
A pulmonary function test would be a very good idea.
X-rays are a very crude diagnostic tool. CT scan probably won't have the resolution to show changes in the small airways.

 

[sheeper]

make sure you get a good evaluation from a dive medicine doctor and a pulmonary specialist. And have them share their finding with DAN and/or Duke.

I was a first responder at Ground Zero on 9-11. About a year later I developed some respiratory issues and was diagnosed with sarcoidosis and asthma. Figured diving was over for me. About 10 years of a lifestyle change, lots of doctors, lots of exercise, and a great pulmonologist, my symptoms basically disappeared by 2010. By 2011, my pulmonary function tests were better than ever. No sign of sarcoidosis and no asthma symptoms. I was cleared to dive again.
I monitor this very closely, I go to my pulmonologist 4 times a year. I'm 58, in better shape than I was at 38 and am actively teaching scuba and tec diving.

so it does not have to be a forever stop. it may just be something to deal with for a while and a hiatus.

 

[stiebs]

Not much to add to what your physician said. Do you understand the rationale behind the recommendation not to dive?

Best regards,
DDM

Thanks DDM, yes, through my reading I understand that granulomas in the lungs can cause blockages that may increase risk of barotrauma. My physician's first response was that it could reduce lung function possibly causing build up of co2.

One thing I'm unsure of though is if it impacts free diving? Should I also take breath hold diving off the agenda as well? (Nothing extreme, just to 5-10m range)

 

[stiebs]

Done any personal research on the problem? Certainly worth spending some time doing that.
A pulmonary function test would be a very good idea.
X-rays are a very crude diagnostic tool. CT scan probably won't have the resolution to show changes in the small airways.

This post is part of my personal research My first stop on speaking to a dive physician was contacting the local hyperbaric chamber, whom I know would be the most knowledgeable in the area. They recommended seeing any diving GP, who in turn would contact them or refer me to them if my condition was beyond their scope of knowledge.

So that's what I'm doing next week.

 

[stiebs]

so it does not have to be a forever stop. it may just be something to deal with for a while and a hiatus.

Thanks for your response sheeper. Certainly seems that it varies greatly between individuals, with some reports of it disappearing altogether within 1 - 2 years, but with it being a chronic condition for others.

Especially since I've only just come out of a diving hiatus, I'm hoping I'm not sent into another extended one...

 

[DocVikingo]

Hey Mark,

In a large number of patients, sarcoidosis manifests only transiently & then resolves--some don't even know that they were affected. About 20-30% sustain permanent lung damage. For a small number of people, the disease is chronic or progressive. Hopefully you'll be one of the lucky ones.

Until your situation has been confidently sorted out, scuba is medically contraindicated for the reasons you cited.

Free-diving is different than scuba in that it involves inhaling air at atmospheric rather than compressed gas pressures. For this reason, free dives in the 5-15m range would not be expected to result in pulmonary barotrauma to the diver with healthy lungs, even with breath-holding. However, we are not speaking of a healthy pair of lungs when pulmonary sarcoidosis is involved. Diseased lungs well may be more susceptible to rupture from even relatively small changes in ambient pressure. The prudent course of action would be no diving of any type until medically cleared to do so by a diving medicine savvy physician.

Best of luck.

DocVikingo

This is educational only and does not constitute or imply a doctor-patient relationship. It is not medical advice to you or any other individual, and should not be construed as such.

 

[stiebs]

Thanks for your response @DocVikingo . Until I see a diving doctor (hopefully tomorrow) I'm hanging onto the facts that I haven't had any pulmonary symptoms, that my scans show up much more inflammation in lymph nodes than in lungs, and that anecdotally patients whom have identified symptoms overnight have a lesser chance of experiencing chronic illness.

My physician has prescribed a relatively low dose of predisonole (15mg), and wants to start weaning me back after 2-3 weeks. So at this stage I'm hopeful, but not holding my breath (no pun intended)

 

[sheeper]

keep up posted froop. it is obviously a topic I am deeply interested in.
next month I go back to my pulmonologist for a checkup. I expect no change