adventures in disaster

Education

A realistic guide to being a heart surgery patient:

Learn everything you can about your surgery and the treatments you will receive..GRILL that surgeon until you are absolutely sure you know what the risks are and how much benefit you are going to get. Research the risks....How do you feel about stroke? Is it something you are willing to live with? Can you fit regular dialysis into your schedule?
Now that you are thoroughly educated and are comfortable with all the risks and benefits go to the hospital and tour the unit you will recover in.

Now for the surgery:

First: if you are over eighty years old don't have heart surgery. The chance you will survive the surgery and escape stroke, sternal wound infections, failed ventilator weans is about 5%.
No one lives forever, not even you.

It has become more popular to have heart surgery patients come to hospital the day before their surgery for preop prep. This is a horrible idea that exposes patients to agonizing anxiety and then over treatment with sedation. Patients run the risk of being exposed to all kinds of nasty infections before they even have surgery.
Agree to get to the hospital on time and do your own prep. You will need to do a little strategic shaving..have fun with it.

You will go to preop on arrival and get an IV started and have an assessment by a nurse. Your family can be with you prior to surgery but don't be ridiculous about it. Immediate family only...that means no sons-in-law,cousins-in-law, that guy at the corner store who tells good jokes..
You will go to the OR and be met by the nurses who will help move you to the operating table. It will be really cold in there. The idea is that bacteria loves the heat..so we keep things too cold for the bad bugs . You can and should ask for a warm blanket. The anesthetist will come in and talk to you and fiddle with machines for awhile and check your IV and move your arms onto the arm boards. The arm boards are not weird torture racks, they are there to keep your arms out of the sterile area so if the doc needs to quickly start a new IV he can do it without trashing the whole sterile field.
Soon it will feel like there are way too many people in the room. You will have at least two nurses, a respiratory therapist,OR tech, anesthesia, a couple of junior doctors, the perfusionist who runs the bypass machine and finally your surgeon will probably come and say hello. The anesthetist will then look in your throat and bend your head back to get a look at how easy or hard it will be to get the breathing tube in. Then he will prepare you for getting knocked out. It always starts with IV medication and sometimes that medication can burn a little going in. Once you are knocked out and the doc has placed the breathing tube you will be as we call it "lined up". The docs will place two different IV's : one in your wrist (or groin) in an artery to monitor your blood pressure, the second in your neck or in your chest right below your clavicle. This IV is big to allow for a second catheter to be inserted and floated through your heart to monitor the pressure in your heart and lungs.
Once this is done someone will call in the surgeon and you will be ventilated with general anesthetic, IV pain medication and a drug that completely paralyzes you.
Generally if a doc has residents or fellows they will do the cutting and harvesting of grafts. Once the chest is open the surgeon will perform your surgery.
Once he is done the assistants will close and transport you to the critical care unit.
You will stay ventilated and will not have your anesthesia reversed. You will wake up naturally.
Your nurse will be giving you lots of pain medicine even before you wake up, she will continue to give you pain medicine whether you ask for it or not (well, the good ones will).
As you wake up you will be asked over and over again to do some very basic things..you must be able to squeeze my hand when I ask you to and let go when I ask you to. You must be able to wiggle your toes on command. Generally you have to very calm, very patient despite the fact that you are gagging horribly on a tube down your throat and are unable to speak and most likely you have both your hands tied to the bed.
That image is pretty damn awful isn't it?
Be aware heart surgery isn't for cowards.
Once you prove that you can breath on your own without the ventilator and you can follow commands and have a stable blood pressure and heart function you get the tube out. You are an active participant in tube removal..you need to cough that thing out.

Getting off the ventilator means you aren't bleeding, have a crap blood pressure, stopped peeing ..it means you won the heart surgery lottery.

Things that go wrong:
You can bleed..a lot..so much that you need massive transfusions and a return to the OR. Having your chest re-opened increases your mortality rate by a lot..too much.
So when they tell you to stop taking your aspirin.. DO IT
If you know that the food you eat is great for making the blood thin..don't eat it the night before surgery.
Sometimes you bleed because something came undone, it happens and it sucks.

Stroke...
the older you are the bigger the risk, assume that you have brain artery disease if you have coronary artery disease...you are a walking stroke risk.
Most of the time postbypass stroke is ischemic..a little clot or chunk broke off during surgery.
These chunks are made up of calcified tissue...no "clot buster" is really going to be helpful.
The only treatment we offer for stroke is sit around and watch and hope for the best. We do control blood pressure and all that but we do nothing that could change the outcome..we don't have the tools or the knowledge yet.

Acute Renal failure
because you have heart disease it is likely you have disease to the renal arteries. When you have a low enough blood pressure for a long enough time your kidneys will pack it in. The older you are it is almost guaranteed. Especially if you are a diabetic.
A rough surgery with some bleeding can lead to low blood pressure which will lead to renal failure and land you on dialysis.

Failure to wean
If you are old and have heart disease you probably smoked and now have COPD or what we used to call emphysema. So your breathing is bad. Having heart surgery means someone may collapse a lung or two. It takes hard work and lots of deep breathing and coughing to blow those lungs back up..well you really can't do that so you cannot get off the ventilator. Every time we take away the tube and the machine you lay gasping unable to cough and end up retubed..eventually you will get trached and sent to a nursing home to recover.

A lot of you or your loved ones will lose the heart surgery lottery.

Be reasonable. If some bad things happened recovery is going to take time..STOP asking me when they are going to get better..I haven't got a clue..in fact I haven't got a clue whether they actually will get better, they could drop dead in the next five minutes..so back off already okay?
When I say "it's hour by hour" get with the program..ask "how is she/he doing right now" and I have the answer!
Keep the family craziness to a minimum. Yes, it may be a crisis but I still don't care what your brother or sister did ten years ago to get dropped from the will.

Be reasonable, if your loved one failed so badly they had a really bad stroke, are vented with dialysis and need tons of blood pressure support consider that death isn't an enemy....remember they would have died if we hadn't ripped away that option.

If you made it through you need to be proactive. When your physiotherapist tells you what exercises you need to do DO THEM. We pay them a lot of money..your tax money..try taking advantage of their services. Get out of bed as soon as you can.
If you are family don't just sit there, glassy eyed, watching the clock for the respectable visiting time limit. Offer to help them get up, walk with them, help them bath and brush their hair...act like you love them.
Over and over again families tell me that the most intimate moments they had with their parents was washing their back or their face, applying lipstick when they couldn't..fulfilling important, compassionate, necessary jobs. Touching your loved ones.
Don't sit there and wait for the nurse and bitch about the care..you are family get off your ass and help. Hospitals are not hotels..we don't provide spa experiences. If your mother needs some vaseline for her lips do it or even better get her some really nice chapstick.
Sitting in a grumpy group whining about the care solves nothing.If there is something you can do that will make things better do it without whining.

Get Involved.
Nurses are bad at asking for this because we think it reflects badly on us but we are stealing something important away from sons and daughters. Fifty years ago it was still common for people to die at home cared for till the end by their family. When we steal that experience we leave families bereft, with no special, intimate moments of their own to remember.
On the other side they are ill prepared to help in recovery, they don't know what to do to help when their loved one gets home. If they had been encouraged to help during the hospital stay they would feel confident and empowered on discharge. Instead we get families sending loved ones to rehab centers and nursing homes..they could have gone home with help but we never offered that option.

Even in death we never encourage families to take their loved ones home. We know it is possible, we have specialists in home care trained in the art of palliative care but we don't mention it all.
We should give families more credit, we should assume they want to be involved instead of rebuffing their attempts. A little encouragement, a little education and a family member can become an excellent caregiver.
Why don't we do this?

Because we have institutionalized patients and their families. Scared them with our rules, regulations ,white sheets and wailing alarms, red flashing lights and frazzled nurses.
Ofcourse all they want to do is run away as fast as they can.

Health care needs to change, really change. We need to stop writing, talking and having focus groups..we need to force the implementation of change. We need to force the issue ...we all will feel better when we are all on the same health care team.
Wouldn't you feel better knowing your family was there, hands on, ready to do whatever was within their rights to do? I would.

posted by adventures in disaster @ 9:03 PM