MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Okay, so, I am an atypical case for sure, but I did not expect this.
I got a note from my doctor a few weeks ago approving me for scuba diving, though it will probably be just for this one trip, and I am definitely a "special needs" diver with restrictions: No deeper than 45 feet. It will also be a very tightly supervised dive-- just me and the guy who runs the tour company.
My doctor would not sign the form three years ago (or rather, she did, but she checked the box that said I couldn't dive!)
Obviously, if I'm having a flare when I get to the resort, I will cancel the dive. A lot of things factored into my doctor's decision-- my blood pressure being consistently lower than it was a few years ago, nearly eight years since I quit cigarettes, no booze for over 3.5 years.
I'm doing okay at the moment-- not as bad as July of 2016, when I could barely body board, but not as strong as a few months ago. Had a rough day in the water yesterday, surf was heavy and breaking poorly, so I only stayed in the water about 15 minutes. I had one bad wipeout, was held underwater about 20 seconds, which was not too uncomfortable.
I went back out and managed to catch one or two smaller waves after they broke, and then called it a day. Diving is less strenuous for sure-- I could definitely have done the dive yesterday.
Again, my symptoms are on the mild side, but they have been significant-- two serious blood clots (DVT) in my 40s and 50s, and a few bouts of peridarditis as a teenager.
Just thought folks might like a little good news from an old-timer! Wish me luck! I dive on Halloween, and then again a few days later if the first dive goes well.
Mary Ann
Mary Ann
You have my deepest respect for not only surviving but improving the condition through sheer willpower. Let us know how it goes, please?
I will post in more detail later, but this was probably one of the most exciting and spiritually moving experiences of my life.
Over the course of the trip, the biggest negative from MCTD over the course of the trip, though not the dive particularly, that I could see was stamina. I did not bodyboard in the more intense spots that the locals go, except perhaps for the middle or northern end of Hanalei beach-- it does not look very big, but the waves are incredibly powerful, and I did catch two of those before moving south and going back to the smaller ones.
What was most notable was how VARIABLE my physical condition was. My first day was tremendous-- I swam a half mile and had a 50 minute session at the south end of Hanalei, the second day was okay, the third day we were rained out of everything except a gentle half mile swim. Then came the diving.
The first dive went very smoothly, and was really exciting; max depth was 41 feet and my air lasted for 46 minutes, which was very good.
The second dive was the one that shocked me; max depth was 45 feet, and my air lasted for an entire hour.
I do not know exactly how to account for why my air lasted so long on the second dive; this is really pretty far towards the outside of the curve for someone who has not been diving in as long as I have. I've never been underwater that long. I think before this trip, 40 minutes was about the max, usually 35, and sometimes I was in shallower water than this.
I could guess that since I was wearing a wet suit for the second dive, I was a little warmer and more comfortable-- that might account for maybe a 10-15% difference, but we also swam faster the second dive and we went a few feet deeper. Also, I should have been more tired the second dive, and I was fighting fatigue a bit. I had some pre-cramp feelings in the bad leg, and the tank felt way heavier than I ever remembered it when I was walking in.
It just doesn't make a lot of sense. My breathing has FELT a little strange for the last year or two, but I guess there isn't anything to worry about yet. (Of course, I always worry about pulmonary hypertension.)
Weirdly, I think having a chronic illness is a good preparation for this sport, because when you're diving, there is always something slightly uncomfortable-- a little water leaking into your mask, you are a little to buoyant, one ear has only partly equalized-- and you have to constantly assess "is this dangerous, or do I just feel really weird?" That felt JUST like MCTD.
The other weird thing was having to eat so much when my swallowing is so bad-- but when you're getting this much exercise, you have no choice. So we'd sit at a table in a restaurant for, like, an hour while I ate a basket of shrimp or whatever.
I will post back later about what I saw and how it affected me, because in some ways that was the most moving part of the whole experience. But I did want to let everyone know that this went just great-- the instructor was like, "You killed it." And it did feel very solid and very comfortable, despite a dozen weird nagging aches and pains and bizarre sensations like air was bubbling from one part of my skull into another!
Thanks again, guys.
Mary Ann