A JOURNEY BEGINS: Part 2

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.

A JOURNEY BEGINS: Part 1

After 15 years of treating my cardiomyopathy and congestive heart failure, when I told Dr. Robert Siegel my energy level seemed to be declining, he knew me well enough to know I was serious. Standard testing did not show a significant change, but Dr. Siegel did not take my concern lightly. I believe he was sent from God to take care of me all these years and to be a conduit for my ultimate healing.

After our first 3 years together, I began to have frequent episodes of atrial fibrillation, a common occurrence with an enlarged heart. Dr. Siegel referred me to an electrophysiologist, Dr. Charles Swerdlow, a leader in the field. Four pacemaker/defibrillators and MANY cardioversions later, my heart would no longer stay in sinus rhythm. The irregular heartbeat decreased my stamina to even less than before. Dr. Siegel and Dr. Swerdlow became extended family members and Cedars-Sinai Medical Center became an admittedly morbid second home.

I had lived at that level for about 3 years before that day in Dr. Siegel’s office – going along okay but seeming to have less and less energy and stamina. I had no idea that what he would say would ultimately change my life. He told me that he did not have an answer for me but that the entire transplant team from UCLA had just joined Cedars. “Transplant?”, I said. “I don’t think we’re at that point, are we?” “Well,” he said, “maybe they have some new treatment ideas. These guys are good.”  I took the name and number for the office and made the appointment.

The appointment in early March was with Dr. Patel. He had looked over my history and at my latest echocardiogram. I wish I remembered more details about that day, but all I really remember is that he suggested I go through the pre-transplant testing to see if I was a candidate. “Really?” I asked. “You’re not feeling well?” he said, his eyes questioning me. I nodded. He continued, “There’s no other treatment for your condition. You may as well get tested. What do you have to lose?”

THE NORMALCY OF ABNORMAL

I was born with restrictive cardiomyopathy of the right ventricle. It is rare and it is genetic. On my dad’s side, we lost many family members to heart problems.  That was normal. The condition has seemed to effect women worse than men. Four female cousins were diagnosed with this condition. One died at 16. One had a heart transplant in her 30’s and passed away shortly after. Her sister had a major stroke in her 30’s. Another cousin has followed a course similar to mine, receiving treatment for congestive heart failure and having an implanted pacemaker/defibrillator. That was normal.

For years I knew an earlier-than-usual death was a possibility for me. Knowing this, I still did not consider that transplantation was an eventuality. I always said, “I’ll be here as long as God wants me to be.” That’s how I felt. That was normal.       

Life before my transplant was good. Sure, there were challenges – that was normal - but it was my life. It was certainly better than the alternative. I had a loving husband and a caring family. I worked part-time at an acting school with the most flexible and understanding boss. We were involved in a wonderful church, playing and singing on the worship team, among other things. I had just started taking online college classes with the goal of obtaining a degree in psychology and doing some Christian counseling. I felt that I had purpose in life and that I was doing well overall.

Of course, every day was a struggle with fatigue. That was normal. I pushed through to do the things that were most important – or most important to me, anyway. Resting in the afternoon was essential to my routine. I would still get tired, but that was normal. I really didn’t know there was any other way to feel.  I worked, did chores and errands, spent time with family and friends, took care of church responsibilities and, in the last few months, did college course work. Every night I went to bed what I call ‘bone-tired’. At times I got so tired I cried. That was normal.

It affected my appearance. My hair was drab, my skin was pale and my lips were purple – all the time. That was normal. My legs were always bruised due to medications and had broken blood vessels. Looking back at pictures, my eyes often portrayed the exhaustion that was in my body. Spud, my husband, used to look at me sometimes and say, “You need to rest.” Other people used to ask if I was okay. I didn’t understand then what they saw or why they were so concerned. I was okay, but I did need to rest. That was normal.

Over the years, certain activities had sort of ‘disappeared’ from my life. I always liked to bowl, but I could really only bowl one game without getting tired. I love amusement parks, but the last time I went I had to get a wheel chair. Prior to that some of the rides had started to make me almost pass out. I couldn’t go shopping for very long. It just took away energy from the other things I needed to do, so I rarely went to a mall. A trip to the grocery store was draining for me. There were many things – sports, exercise - that I never attempted, because I knew I wouldn’t be able to do them. I couldn’t walk and talk at the same time without ending up panting and breathless. That was normal.

That was my life, my version of normal. What I didn’t understand was how abnormal my normal was. I couldn’t understand, because I had never experienced anything else. If I saw these kinds of things written about someone else, I would think how difficult their life must be. I would have sympathy for them and pray for God to help them in their struggle. Thankfully, that’s what other people were doing for me......

A Change of Heart: An Introduction

(Author's note: This was written June 23, 2010)

I was born with restrictive cardiomyopathy of the right heart. I was undiagnosed until age 19. I had a hard time keeping up with my friends in childhood and my teenage years, but I was determined not to be a “wimp”. So, I pushed myself. Even after my diagnosis, I still pushed myself. It was how I lived and how I did all the things that I wanted to do. I went to college, then to work full-time. I led church choirs; I wrote and directed church productions. I sang and played keyboard full-time in a band for 10 years. I traveled, lost sleep, sang and played my heart out, set up equipment, etc. I did it, because I pushed myself.



At age 35, I went into congestive heart failure and, eventually, into chronic atrial fibrillation. I kept pushing, but my limitations were increasing. I could only push so far before my body could no longer respond. My strength was slipping away. I didn’t realize it at the time, but so was my life.


I told my doctor I was feeling weaker and he referred me to a transplant doctor for further treatment. I did not believe I would be a candidate. I didn’t think I was sick enough – which just shows how your perception is shaped by your experience. I thought I would need to have oxygen and barely be able to move before transplant would be considered or before I would consider it. What if I didn’t have the transplant? I heard the words: “Maybe a year.” I never expected it. My dad had the same condition. He hadn’t had the pacemaker/defibrillator and other medical intervention that I had and he lived to be 68. I was only 50. I needed a change of heart.


It happened fast. I was hospitalized and, within a couple of days, I was at the top of the transplant list. Within a few more days, I got the word about my new heart. I was transplanted on my birthday, May 6, 2010. What an amazing birthday present!


It’s been 6-1/2 weeks. My new life is just beginning. I’m still healing and making my way through the post-surgery process. I’m not pushing myself, but I can tell, when it’s time, the strength will be there. I have color in my face and my lips aren’t purple. My voice is stronger. I get more oxygen when I breathe. My body wants to move. I start cardio-rehab this Friday and I’m excited. I can’t wait to be stronger, to exercise more. I can’t wait to go bowling, walk all over an amusement park and a mall, ride a roller coaster, run on the beach with my brother, ride a bike with my husband…. I’m ready to go forward. I can feel the possibilities pumping inside me. I can push into the future with purpose, passion and power….I’ve had a change of heart.