I was supposed to get surgery next week to get a tumor removed from my uterus that probably is beinine.  I was really anxious about it because I am afraid they may give me something that has sulfites or sulfates without realizing it.  (all meds have preservatives and I am allergic to sulfa stuff). So luckily the anesthesiologist has another mastocytosis patient who is in much worse shape than me. He knows that the best thing to do is prep my body with a steroid or something ahead of time. I was really nervous that they would put me under and I wouldn't wake up.    Everyone here knows how it feels when your condition is not taken seriously.

I really don't keep track of the medication names very well. I know I need to start taking them regularly, but some make it hard to concentrate. Others make it hard to sleep. Most of them make it hard to hard to wake up. If the drugs don't rule my life, pain does. Dang it!  Couldn't I have won some other lottery?

Hi Phyre,

Redbird is 100% correct, we´ve got emergency protocols here for you to copy for your anesthesiologist and you can sucessfully go through surgery without any trouble.   I underwent perhaps the most dangerous kind of surgery a masto patient can face, open heart surgery, last year and amy anesthesiologist was EXTREMELY careful and got me through sucessfully and I´m VERY reactive and my doctors had never seen a masto patient prior to me.   So, if my doctors could do it, then without a doubt yours can too!!

So, RELAX, the fact your anesthesiologist has already seen a masto patient means he´s fully aware of what can happen and will do EVERYTHING within his power to make sure you are the SAFEST patient in that hospital!!!!!


Let us know how things go!!   We´re here with you!


Lisa

Thank you all so much!  I delivered the emergency protocol stuff to the anesthesiologist today, and gave him the names of local Masto Drs in Denver.  (thanks again Joan)  I could not believe the weight lifted off my shoulders.  I developed this anxiety about taking medications because over the years too many of them really messed me up due to my allergy to sulfites/sulfates.  My symptoms are not that obvious, and I look generally healthy even when I feel like cr@p.   Sure I fainted once, but most of the time I just feel really sick and suffer a lot of pain.  I get nausia, but I don't throw up very often.   I don't even get fevers from infection.  What's up with this body?  My imune system is sooooo getting fired just as soon as I find a replacement...

Phyre;
Good luck with your surgery! Let me know if ya find a place that has new immune systems-Im sure theyll be flyin out the door !
As far as "looking" healthy... it cracks me up when people say;
"Oh you've lost so much weight,you look great" and how about "You look so rested/relaxed". I always wanna hand em my list of meds n go "Here, you can look this good too!" :
laughter is good medicine,
lori

Phyre, you have good reason to be concerned about anesthesia for it can indeed be very dangerous to us.  However, as long as you are properly premedicated and your doctors and anestesiologist are ALL on board, there is no reason whatsoever for you to be worried!!   You will be FINE!

Hugs!

Lisa

You are soo right, Jilly!!   I teach private English classes and one of my students is in her last year of med school.   She was considering going on to be an anesthesiologist, but she´s reconsidering her choice because she says it´s considered pretty boring.  I´ve told her what I´m capable of and you should see her eyes BUG!!   But she told me that cases like mine are extremely rare and that on the whole it´s rather routine and BORING and they LIKE IT THAT WAY!!    

Anesthesiologists are your BEST FRIEND and I think that each of us should have one or two of them who we can consult with and arrange to have on hand should we need surgery for masto patients should not be taken into emergency surgery.  Everything should be properly planned out.  However, in the case of an emergency, if there was an anesthesiologist who could be called in for that surgery, then that´s best!

I´m in the process of "training"  a 2nd anesthesiologist.  I have a bone marrow biopsy coming up this week and this will be his first time working with me, but he has his colleague who has worked with me and I gave this doctor my reports from my surgery last year and so he´s well studied and feeling confident and so am I.    This is how it should be!

Lisa

Phyre, this is exactly what I´m talking about when I said "training" an anesthesiologist.   What I found out eventually is that who call the shots in the OR is not the surgeon but the anesthesiologist.  The doctor who is most active in keeping that patient alive is the anesthesiologist.   The surgeon does the work and gets the glory, but it´s the anesthesiologist whose hands you really are in.

Here in Brazil the patients will meet with an anesthesiologist prior to any sugery.  They will sit down and talk about allergic reactions and any prior surgery and any kind of reactions, etc.  They will develop a plan for that surgery and the patient has to go through a series of pre-surgical exams, getting each group to check off okay prior to the surgery being scheduled - x-rays, bloodwork, anesthesiologist and cardiologist with the cardiologist considered the boss for the pre-surgical okay.   But when it comes to the surgery itself, within the OR, the two main stars there are the surgeon and the anesthesiologist with the anesthesiologist calling the shots.  He is who says when the surgeon can operate and also tells him when to stop - the stability of the patient is in his hands and if the patient isn´t stable, then he´s got to call the shots for even though the surgeon has to do his job, if the patient is in danger, what good is the work of the surgeon then?  

So, this is PERFECT that you met this anesthesiologist in person.  Ask to meet with him as a consultation and when you do, ask him for his cell phone number so that he can be called in again should you have any kind of an emergency situation or that other doctors can call him in case of an emergency.  His experience with you is worth GOLD and he will now turn into a reference point for you for any future procedures or in case of an emergency.


Lisa