Advice or maybe just an ear that understands...

Hi all, I was diagnosed with ITP in 1987, at age 13.  Platelets as low as 7.   DId steroid treatments with short term efficacy, and IVIG with the same.  By about age 18, my platelets had stabilized, and most tests were between 50-70K.  Not normal, of course, but high enough to live a normal life as long as I kept an eye out for bleeding, bruising etc.  Being that wonderful mixture of both a teenager and a bit of an idiot, I took up rock climbing and did it at a pretty high level until I was about 35.  Managed to avoid any bad injuries.  For the past approximately 15 years, I have been training (and now teaching) brazilian jiu jitsu.  My children both train with me, and it is a very, very large part of my life. 

Now, about 6 months ago I had a  colonoscopy that showed some pre-cancerous growths, so they needed to do a repeat pretty soon.  Before that repeat, my counts came back below 30.  So, two more rounds of IVIG, and the counts were over 100, and they could do the repeat.  All is good.  Yesterday morning I got blood drawn, and got the call from the doctor to immediately head to the ER because my platelets were at "critical levels".  They have started me on high dose Dexamethazone and sent me home with more of that and orders to talk to my hematologist promptly.  And a pretty firm "no more martial arts." 

So...if anyone know BJJ, if you aren't "rolling" (Sparring), or competing, with a gentle/understanding partner, the chances of head impact of internal bleeding due to organ impact or broken rib/bone is rather low.  ANyone ever face something like this?  A (seemingly) over cautious medical practitioner telling you t o stop doing something that is so central to your life?    

Hi Taulaum - welcome but sorry you are here.
1st, what did your doctor (a hematologist?) mean when you were told platelets were at "critical levels" - that has different meanings with different doctors I'd think (my hematologist in Hong Kong would panic if my count went down to 40k it was all over the place when we lived there).    What was the "critical levels"?   When is your next count?

I've never had a hematologist (and I've had one here, in Tokyo and in Hong Kong) tell me to stop doing this or that, not even skiing.  Some on here have been told not to shave, not to use a knife in the kitchen - no comment.  

Since I don't know what your count is I can't have an opinion    And believe me I'd not tell you what to do!!  My ITP showed up in 1989, prednisone and then 1 IV of WinRho a few years later after a crash got my count to a decent, not normal, count. 

I am smiling because you are doing Brazilian Jiu Jitsu with your children training with you.   My son and wife are both 2nd degree black belts in Kenpo (Kempo) Karate, want to say Hawaiian Kenpo Karate, their children a boy almost 12 and a daughter 15 train with them and both are junior black belts (adult blue belts) - all 4 have been in tournaments in our State..  In order to go for the next degree black belt in Karate our son must go to a different discipline but I can't recall how many belts he has to earn before going back to Karate and working towards his 3rd degree black belt.   My son is now doing Brazilian Jiu Jitsu!!   A couple days ago his toe got caught in his opponents gi and now he is waiting for an appointment with an orthopedist to see if it needs a pin - last month he got a black eye.   So I can see why your hematologist has said no BJJ - do you think he probably means until your count gets to a better number?   

I for sure understand what BJJ means to you and your children, I am proud of you all and admire your dedication!!   I really hope you don't have to be away from it for too long.  Can you still teach?

Please keep us posted as to how you are doing and what your count was and is after the dex !     I sincerely wish you all the best!!

Melinda

Taulaum
Like Mel I would love to know what your doctors consider critical levels. My haemo let me fly from UK to Australia and back saying make sure your count is above 1 before you fly. Not exactly a martial art but cabin pressures have to be taken into consideration.
Doctors cannot order you to stop your BJJ. They can give you advice but is up to you if you follow it.

Huh, my response just disapeared to you both. My count was down to 9K, when they called it critical. On retest it was 12 and then 16, and with heavy doses of the Dex, I got back to 33K. I've been told that below 30 skiing, BJJ, and rock climbing of any sort are "out." Between 30-50, I have been advised to only "top rope" rock climb (as opposed to lead climbing, which in theory should lower, but not eliminate the risk of head impact or body impacts that could lead to substantial bleeding. "Careful skiing" and drilling, but not sparring (rolling) in BJJ. I actually went to our school's "testing and curriculum" day att 33K and did VERY careful showing of my skills in the curriculum, and watched my eldest get promoted from a youth belt to an adult belt, and was actually awarded a strip eon my own belt despite being forced to show a somewhat limited degree of techniques (no takedowns, no rolling submissions or recoveries, etc).

My next test is tomorrow, which will be 48 hours after the last heavy dose or steroids. Hopefully it is high enough to go back to at least light training, and then plan for more treatment that can get me back about 50-60 and I get get back to really training the way I like. I am hopeful, if not terribly opptimistic for a "quick fix." I am trying to learn about the newer treatments that seem to have been studied in the years since I have been holding steady on my own. Perhaps some of them may help get me where my body needs to get.

I have no intention to stop coaching, as spreading my love the the art is ALMOST as important to me as the devlopment of my skill.

Mel, I love to hear about arts that require other belts to cntinue. My main instructor is an extremely high rank in a few arts, and most of which require at least a blue belt level (if not an awarded belt) in BJJ in order to get to some black belt degrees. I love working with other systems' black belts on their BJJ, as they always have so much to share. I have recently actually started as a white belt in Sho Bjin Ryu, and the instructopr I have been mainly training under is preparing for his 2nd degree, I beleive, so I am learning from him and hopefully helping him with BJJ. That sharing aspect of the martial arts has always been wonderful for me.

So apparently the dex worked (at least for the shrot term). My counts from this morning were slightly over 100K! That means I can go back to BJJ tonight, and just need to go back for labs next week to see if they are staying up. THen we';ll need a plan to monitor more closely and perhpas start treatment of another typoe should they fall again. Whew!

Taualum23
Great news..fingers crossed your count stays up

My computer bit the dust since I was last here - I forgot to turn it off for the night and the electricity went out, when it came back on the computer just would not start.  Finally have a new computer as of today & am trying to learn Windows 11 after being on 7 for so darn long - so will get back to you soon Taualum !    I was delighted to see that your count went up after the Dex !!    Now don't get discouraged if it drops some, the count doesn't stay the same all the time it moves around.   Not sure I mentioned that when I was diagnosed I looked like I had been beaten in a back alley with a 2x4, count 11k and dropping. 

I enjoyed reading about how much you love BJJ and are now starting Sho Bjin Ryu - will have to look that one up. 

Later,
Melinda