Lurking, there….right behind me…. Part 2

welcome back…. when we last left our hero…..

These were the criteria and basis I used to arrive at my decision to have you crack my chest wide…. poke around, pull something out, then close me up……  So again he just sits looking at me, just long enough to be ALMOST uncomfortable and then he says…..

You need to be absolutely sure of this – it’s a very serious decision you are making, he then proceeds to try and totally freak me out and spends the next 5 minutes telling me how many things can go wrong during an operation – he actually goes so far, swear to god – he starts telling me about the different times he knows about where instruments and other objects like gauze have been left inside patients and caused complications. How terrible the recovery period is, 6 to 8 weeks of very bad pain, chest tube, for drainage and as your chest heals, there will be a tube down your throat. Then he moved onto the complications specific to me – he says we (the doctors) are in a very difficult position –  if I go into episodes of fibrillation during my recovery, there is a serious possibility of clotting and embolisms, but they (the doctors) are in a quandary, if they administer anti-clotting, blood thinners it will present complications with the healing process of the incision, the internal stitches and the bone regeneration for the split breastbone and ribs.

Really, really pouring it on thick – making the operation sound as risky as possible and pretty much sounding like advocating for the procedure is the furthest thing from his mind and just about the last thing on earth he would ever do. Well, I started getting all good and riled up again and said probably with more force than I intended, which was pretty clear on both his and the nurses face, “Well if he was trying to make an already very difficult decision, even more so, then he was doing one hell of a good job” “let me get this straight, last appointment you couldn’t speak highly enough of the benefits and advantages of the thymectomy, going on about the relatively low risk, how firmly you believed in it, how much my regular neuro believed in it, how virtually everyone he had ever seen benefited from the procedure – and now – you’ve just spent the last few minutes trying to convince me this operation is akin to a brain transplant”. SO WHAT DO I DO NOW. I come to you for help and guidance and instead you throw gasoline on the fire of my fear and uncertainty – giving me – in the course of 2 visits, two utterly, diametrically opposed viewpoints.

So you TELL ME, what do I do, am I to understand that in the space of 9 days you have completely reconsidered your medical position and the course of action you’ve held for more than 25 years and decided that Thymectomy is too dangerous and doesn’t hold a significant benefit nor do the risks outweigh the benefits…. really….  — Well he stood up and came over to me, calling me Chris, rather than Mr Campbell and puts his hand on my shoulder and tells me no, of course not, please please calm down. I suppose it’s not out of the question to suggest that more than a little of my frustration was pouring out… he was using his very best bedside manner to soothe me. I apologized – but said it sure sounded to me, like he was trying to scare me into not wanting the operation, so I would continue in the study. I said it took alot of hand wringing thought and soul searching to decide to go ahead with the operation and now you dump this on me….

They are both on their feet now, next to me, keeping me from standing, not forcibly – just with their presence and reassuring tones – I’m not the Incredible  Hulk, but I’m big enough to be pretty concerning when I am visibly upset and obviously extremely agitated. So after a few minutes I begin calming down, and they sit back down and we continue. He wants to be perfectly clear that in no way is or was he trying to influence my decision in any way regarding my willingness to participate in the study or confuse me about the most appropriate course of action. Of course he has for many years, and still believes a thymectomy is the best course of action. HOWEVER…..

After going over all my data and test results, and based on the rating & severity of my symptoms and the other mitigating factors, such as the heart condition, etc etc… he has questions. Well OK, so what should I do, then…. “well I can’t really advise you as you are not officially my patient – and you need to thoroughly discuss with your Neurologist and GP and make your decision based on those discussions” – OK so I’m sitting here with one of the top 3 specialists in the world in my specific condition and you’re refusing to give me any guidance at all….. really?!?  — Well I’m sure you understand, I’m in a difficult position – since you are no longer in the study, and therefore not my patient – it isn’t proper for me to comment or offer advice. So – I laid it out and said look, I promise to not go running around saying you said I should do this or that – but so that I can make the best and most informed decision possible, what do I do, what would be your advice?

For the third time he sits looking at me for a minute saying nothing, then he says, well, it’s true the vast majority of people get better with the operation and I still firmly believe it is the best thing to do, that being said – there are always risks and concerns with any surgery and this is a significant procedure and you have complications working against you. Given these parameters and your current condition, you are not in immediate mortal peril and until the disease progresses he sees no reason to do anything that may, no matter how small the chance may be, place you in mortal peril. The demon drug is bad news and carries numerous risks, the operation also has numerous risks – so his recommendation is – sit with status quo…until something goes wrong or the disease starts progressing. That’s it, do nothing.  Then he thanked me, said he would send his recommendations on to my neuro, and that was that. Just sit back and wait until my breathing or limbs fail, then and only then should I bother to do anything about it…… don’t be proactive, be re-active….. don’t take charge, be a hostage a prisoner…

So I leave, feeling as if a bomb went off in my head, with many more questions than answers and no plan of attack, only the need to make another appointment with Neuro 1, to see what is next, again I’m left frustrated and groping for answers. So end reult after all of this is… nothing, no plans, no dates, no next steps. Left a message with Neuro 1 BUT they don’t work on fridays… so I guess I’ll get my next appointment information Monday and go from there. If I had any more specific information I would have told you yesterday but all this up in the air bullshit could wait… it’s too depressing.

So life remains in limbo, work remains in limbo, family remains in limbo, friends remain in limbo, EVERYTHING IN LIMBO. We’ll see what Neuro 1 thinks I should do, but I’m still leaning towards operation, just get it out and lets be done with it….. I don’t wanna wait until one day I can’t breathe or walk, or pick something up, do it now, early and maybe everything will be better. But the thought of sitting waiting, so that one day it just hits me, is repellent.

OK, well that concludes my first ever two part post, and Mom – you don’t scare me anymore…..

Have a Great Day, and I’ll do my best not to murder anyone……

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