Before you can get a transplant, doctors want to know all they can know about your overall health and your lifestyle. The run lots of tests and ask many questions. They also give you a truckload of information. The process requires a few days out of your life to complete. One entire day is devoted to several of the tests and an orientation process.
To find out if I was a candidate for a heart transplant I needed the following tests:
Electrocardiogram(EKG): The one where they hook you up to electrodes and print out a reading of your heartbeat.
Echocardiogram: You get hooked up to electrodes like an EKG, but they use an ultrasound wand to view and record images of your heart, its sound and your blood flow.
Chest X-Ray: They look at lung function, check for infection and assess heart size.
Lung Function Tests: They put you in a booth and you have to breathe into and out of a tube, as instructed. It probably took about 45 minutes, and it was quite taxing in my condition.
Blood Tests: They took close to 30 tubes of blood for the various tests. It actually took them two tries. My vein “dried up” after about the first 20 tubes. They test for various diseases (hepatitis, chickenpox, syphilis, HIV) and for liver and kidney function. They also do blood and tissue typing so they can find a donor who is as close a match to you as possible.
Dental Exam: A regular dental exam and cleaning to be sure there is no infection.
Left Heart Catheterization: They insert a tube into the femoral artery, which is fed up into the heart. In this case, the purpose was to make sure there were no clogs in the coronary arteries. I have had these done several times over the years for different purposes.
Right Heart Catheterization (Swan-Ganz): They insert a tube into an artery in the neck and feed it into the heart to measure pressures inside the heart chambers and the major arteries. I’m not sure of the purpose, but, at certain points, they pump a small amount of saline solution into the heart. This process enables them to determine how well the heart is functioning. I had not had this procedure before.
Since messing around inside your heart can cause arrhythmias, you are hooked up to an EKG for monitoring purposes for both catheterization procedures. They do a local anesthetic at the site and give you a mild sedative, but you remain conscious. There is the usual pinch and sting from the needles and the drugs going in. After that, you don’t feel much pain. The neck area is more tender than the groin, though. You mainly feel pressure as they feed the catheter in and some odd sensations when they are messing around inside the heart. I don’t know how to describe them other than to say it’s uncomfortable and it makes me nervous.
The doctors are usually explaining as they go, then talking to each other, maybe joking around some. I throw a little joke in if it crosses my mind, although I’m not sure I actually make sense. I am on drugs, after all.
The orientation process consists of a series of meetings about every aspect of transplant surgery and life afterward. Spud, my husband, and my mom were with me on that day of tests and meetings. As I said, it’s a truckload of information, so it helps to have more than one person listening.
You meet with financial coordinators who explain how the surgery and medications are financed and what kind of out-of-pocket expenses you can expect. They also give you ideas on how to fund the out-of-pocket money. They have your insurance information in advance; they have researched what and how much it will cover. They give you handouts to take with you. Their projections prove to be fairly accurate.
You meet with a social worker who explains the type of care you will need post-surgery. Their job is to determine if you have family and friends that can help you after the surgery or if you will need outside assistance. They also assess your motivation and the commitment of your support system. These factors are considered when evaluating whether or not you make a good transplant candidate. People with loving and supportive friends and family tend to have successful transplants.
You meet with a dietician who explains the type of diet you need to follow after the transplant. It is basically your standard healthy diet – lean protein, lots of vegetables and fruits, whole grains, etc. They also explain a basic diabetic diet, since some of the medications can make your blood sugar high. It is possible you may have to take medication or insulin.
You meet with a transplant coordinator – a nurse who is specially trained in transplantation. They explain everything you need to know prior to the surgery and what to expect after the surgery. They talk a lot about the precautions you have to take with food cleanliness and preparation because you will be on immune-suppressing medication. They talk about side effects from those medications. They tell you about the self-care regimen you will need to follow post-transplant. I was given a binder of information to take home and study. It was a bit intimidating, to say the least.
You meet with a transplant surgeon. He explains heart transplant surgery – the procedure, benefits, risks and possible complications. They open the pericardium, cut the aorta and pulmonary arteries, remove the diseased heart and sew in the donor heart. The average takes about 4 hours – which is less time than my first pacemaker-defibrillator surgery took! That little tidbit boggles my mind.
After this, I know more than I ever thought I would need to know about heart transplants. Everyone we speak with is very positive about having a transplant, even excited. Of course, none of them has actually HAD a transplant. Spud seems hopeful about the prospect; Mom seems resigned to what may be the only option.
I am unconvinced. I have thought about this possibility and have always thought I would just choose to go quietly. “If my heart is done, I’m done. “ Now, it’s actually being presented as a viable option, and I’m not sure how I feel. As far as I can tell, I am not actually dying. So, really, what are the odds I’m even a candidate? This is all very interesting, but I’m certain I’m not there yet.