Decisions, Decisions, Decisions….

December 8, 2011

Health, Mike

My current Christmas wish is to wake up one morning, transformed with some new knowledge and abilities…a cross between a cardiologist and a neuropsychiatrist.  I suspect if I were, though, I would have to run screaming from those realities because in general I lack detachment and objectivity.  The reality would be far too much for me to face on a regular basis in any purely academic manner.  I think it would help me with my decision making though…and there seems always to be some new, risky decision that requires me to weigh in on and choose a path. 

Truly, just when you think things have settled into something that resembles routine, normal even, life jumps right in there and complicates things again.  I don’t know the answers to the questions any more, I don’t know which path to take and I really, really don’t like being responsible for the choices any more.  There are no reasonably safe choices and my brain feels like scrambled eggs trying to figure out which of the undesirable paths at the crossroads Mike and I should traverse.

We saw a new cardiologist this week.  I like the guy.  I feel like he would be collaborative and not have predetermined outcomes in mind as he makes decisions about Mike’s future based solely on what he deems his level of neurologic recovery to be.  I think I could work with the guy…and I think he would work with me.  He’s cautious and he’s pragmatic but he’s sensitive to others.  He also recognizes his personal limitations and is unafraid to share them.  He told me he was glad he was not on duty in the cath lab when Mike had his cath and arrested.  I told him I was aware that the guys in there worked their tails off and I would never know why they took the extraordinary efforts they had taken but would always be grateful.  He told me not only did they work their tails off, but in an extremely stressful situation.  He explained that the stress of a situation like Mike’s arrest was incomparable to most anything else and is why he no longer does catheterization.  He found that stress to be more than he wanted to deal with regularly.  I  had not previously considered the stress for the doc…it certainly gave me a new perspective to consider.  Anyway.  I digress.  I thought the guy was not only a really good cardiologist, but very human and not a machine. 

Of course, he started off by asking me if anybody had spoken with me about discontinuing the amiodarone that Mike is on that keeps his heart rate regular and keeps him out of the persistent A-Fib he was in prior to the heart attack.  Amiodarone is a very effective medication, but kind of a medication of last resource if it is to be used long term and really used only short term and then, kind of reluctantly.  There are huge toxicity issues with it…lung toxicity at the head of the list, but liver and kidney as well and Mike’s kidneys are operating under a bit of duress since the failure during the hospitalization when he required dialysis. There are additional issues when one takes simvastatin as Mike does.  I told him I had inquired and was told there was no harm in him being on it for like a year or more as long as there were no problems.  I had also asked the downside of being back in A-fib given his current cardiac state post MI if we take him off amiodarone and he slips back into A-fib.   I was told no problem.   The good doctor was not so promising as his predecessor.  

The risk/benefit of remaining on amiodarone, he says, does not weigh in favor of continued therapy.  Lung or other toxicity is inevitable.  And permanent.  To keep Mike on it would be doing bad things to him to try to help him essentially.  There is a possibility that the A-Fib resulted from the undetected blockage.  Since all the rest of the cardiac numbers and results are absolutely normal since the arrest and the blockage was opened, it is possible the A-fib won’t be an issue.  He cautions me, however, that his cardiac picture is being carefully controlled with medication.  Removing the medication could make the cardiac picture not so normal pretty quickly.  His heart was in really, really bad shape with the MI/Arrest.  When the meds are removed, if he goes back into A-Fib, his heart could suddenly start to gallop along at 130 beats a minute or so and put tremendous strain on his heart…which may be unable to handle it.  He is hoping that is not the case, and thinks it won’t be, but he must consider that possibility as must I.  He could need to go into the hospital for stabilization if he goes into rapid A-fib.  OR, he may just feel occasional racing of his heart or occasional flutter.  His hope is that since he has lost weight, the blockage is open, if he is really compliant with wearing his cpap, the a-fib will be a non-issue.   Do I want to agree to stop the medication and take the risk?  

As hard as I fought to keep Mike alive…as minutely as I directed his care and held the docs to fight rather than give up…I never knew intellectually if I was making the right decision.  My gut told me I was.  Now I find I am in a similar position, but the decision could put him back in the same situation we were in before…and it would be a result of my decision.  My gut tells me that the right thing to do is to dc the amiodarone.  For a girl with fundamental trust issues, I find myself in the position of having to trust that some doc’s knowledge is superior to another’s and decide what risks are acceptable and which are not.  I figure that if I don’t make the decision now, take the risk, we will face the inevitability of serious illness that results from toxicity…and this doc tells me that is a certainty.  The whole a-fib thing a possibility…and I get the sense, a more manageable possibility.  I agreed to discontinue the Amiodarone.

As I was driving home later, I got to thinking about this.  Agonizing over it is more like it.  Suddenly I recalled the cardiology I HAVE learned through all of this.  The gold standard concurrent treatment for A-fib is daily coumadin to mitigate the risk of stroke resulting from a blood clot.  In A-fib the pump(heart) doesn’t pump all the blood out of the atrium and it pools there…and can coagulate…creating a clot.  These clots, if they travel, generally go to the brain causing a stroke.  So if Mike DID go back into A-fib, would they want to put him on coumadin again?  I recalled the vascular surgeon’s comments when he consulted when Mike had the retro-peritoneal bleed in ICU.  “Nobody should give him anti-coagulants.  If they do  you won’t need a bad lawyer to go into court.  He will bleed.  Bad enough he has to be on Plavix and Aspirin.  He should not have more.”  He never said for how long…really, I think nobody knows.  I called the good doctor.  I asked if the treatment plan would include coumadin, and if so, was that going to be safe?  Does the retro bleed influence his decision to stop the amiodarone?  Again he told me he might need to go on coumadin…if so, they would look at stopping the plavix or aspirin in favor of the comadin.  He’d talk to some of the interventional guys at that point.  He still thinks that the risks of staying on amiodarone outweigh the potential risks.  SO.  Since he is so convinced…and I am paying him for what he knows…and he is a smart guy, well thought of with good reputation and known to be cautious, today I am going  to stop the amiodarone.  It has a really long half life…it’s going to take six weeks till it is weaned out of his body completely.  Maybe more.  During that period I must take vitals twice daily, report heart rate of 100.  Race to the emergency room if he is light-headed or short of breath. 

To add to the fun, Mike’s blood pressure has been low.  He’s on a couple hypertensives…it had been a few…because during the recovery from the arrest, his systems were all messed up.  His normal blood pressure pre MI was 100/60.  During recovery it was regularly astonishingly high.  Stroke like high.  So now the doc wants to remove one of the BP meds.  His BP has been running 88/57.  Too low.  Did I want to dc the amlodipine as well?   Well, since he also told me it interacts with the Zocor, just like amiodarone, fine, lets go for broke!  Even though I just refilled the scripts.  What’s a couple hundred bucks in the overall scheme of things?   But now, we need to be vigilant to ensure it is not going up too high again. I’m back to charting BP’s and heart rates…not a big issue…but it’s hard on Mike.  He prefers to think of me as his WIFE, not his nurse. 

Always a crossroads.  None of the journey’s looks like a daisy strewn garden path.  I don’t want to be this grown up.  Nope.  I want somebody else to be the grownup now and carry all this for me.  Please keep Mike in your prayers.  Pray that the decisions are the right ones, that the docs can handle anything that comes up…that nothing WILL come up and our new normal will simply continue as it has been till now.  Really, that is my current Christmas wish….

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