Sunderland: The blessings and challenges of a heart transplant

EDITOR’S NOTE: I’ve included a section at the end of this article about my actual transplant surgery. Just a warning — the section includes pictures of the surgery and my previous heart. If blood or internal organs makes you squeamish, stop reading at the “Heart transplant surgery is really cool” subheading.

This weekend marked my first taste of freedom in 47 days.

After three open heart surgeries, the implantation and removal of machinery in my chest and several close calls, I received the blessing of a donor heart. Then Saturday — two weeks after transplant — I was released from the hospital and officially became an outpatient.

The whole experience has been a blur of strong emotions, both positive and negative. It’s also been a fascinating learning opportunity about myself and the wonders of modern medicine.

Here are some of the things I’ve learned.

Hindsight really is 20/20

Based on both my own experience and many discussions with other heart failure patients, one of my biggest observations is that people with heart failure rarely realize just how sick they are.

It’s because heart failure is very gradual. It slows everything in your life down, but it rarely stops you completely.

You can still work, play and do all your normal activities — just fewer of them. It’s easy to push past or brush off the symptoms until things get really bad. And even when they do and doctors start telling you you need to be hospitalized, it’s hard to not give them that “you’re crazy” look.

For me — even in the hospital — it was hard to admit how seriously ill I was.

I remember one night when I had a major complication and was rushed from the cardiac floor into the intensive care unit. I spent the night being worked on by an entire team of doctors, nurses and techs. All of them were treating me like I was going downhill fast.

But I didn’t really feel any different. So even when the incident got me moved to the top of the transplant list, it was days before it occurred to me that my medical team believed my heart was on the brink of going completely and that I might die.

It shouldn’t have. But that realization floored me.

It wasn’t until after transplant that I began to understand the scope of the illness.

One of my first observations about my new heart was that as I slept at night I could hear it — a strong, resonating thump at regular intervals. It sounds completely normal, and it was a sound I hadn’t heard in so long I’d forgotten what it was supposed to sound and feel like.

Also, pictures are worth a thousand words. One look at the heart they removed from my chest (scroll down if you dare), and it was painfully obvious just how bad things had become. The bloated mass looks more like a deflated, half-machine jellyfish than a human organ.

And finally — although I am still very early in the recovery process — I feel so much more normal. My circulation is better, I have more energy and even my brain seems to be working better.

I realize now that I was very sick — dying, even — but I had to start getting better before I believed it.

Gratitude and guilt

Of all the emotions tied up in a traumatic event like this, one of the greatest is gratitude.

You’d think a struggle like this would leave you cynical or angry at the world. But in my experience it just makes you want to hug people and say thank you.

Throughout this ordeal, so very many people have reached out with support of all kinds — from monetary donations, free meals and babysitting to the very simple “we’re thinking or praying for you.” It’s incredible, really. I never dreamed so many people cared — and I can’t wait to be able to return some of that gratitude and support to those who have been so kind to me.

I also gained a great deal of respect and gratitude for the doctors, nurses and techs who so diligently worked to keep me healthy. I’ve met some tremendous people, and they’ve had what I assume will be a lifelong impact.

Of course, the one person to whom I am most grateful is someone I will never meet, because his death was the catalyst that has allowed me to live. I know very little about my donor, and I probably never will. But I will never be able to repay the debt or express how much his gift truly means to me and to my family.

Gratitude aside, some negative emotions do creep into the mix. The biggest for me is guilt.

I was on the transplant list for only two weeks before I received a donor heart. As I understand it, that’s almost unheard of.

Most heart failure patients wait months or even several years before their name gets to the top of the list. I’ve met people at the hospital who had spent six or eight months confined to a hospital room just waiting for a heart.

And I got one after being listed for two weeks. Now logically, I understand that I was moved to the top of the list because of the severity of my condition. But that doesn’t make it any easier when you see the great need out there for these lifesaving transplants.

I’m more grateful for this heart than I’ve ever been for anything else. But I certainly didn’t deserve it more than the many others who are waiting for a new heart. My prayers will continually be for them, as they wait for their turn.

DISCLAIMER: This is where the graphic photos start. Stop reading if you don’t want to see surgery or blood.

Heart transplant surgery is really cool

While definitely a painful process, heart surgery and transplants are incredibly fascinating. It’s also a very fast process.

As I understand it, when a donor becomes essentially braindead, the administrative process of divvying up his or her internal organs begins.

A list is generated by the United Network of Organ Sharing, “which ranks recipients based on severity of illness, length of time on the waiting list, size compatibility of organs, blood type, tissue type, and proximity to donor (because of time constraints on donated organs),” according to www.yesidaho.org.

Then doctors at hospitals throughout the donor region start making phone calls or hospital visits with potential recipients to see if they want the organ. The time constraints mean patients have to make a decision quickly — I had less than 30 minutes to decide. If you accept, more tests are ordered on the organ and harvesting is arranged. If you decline, transplant officials move down the list.

The heart is the last organ to leave the body, and it has a shelf life of about four hours before it degrades and becomes unusable. So that means surgery often begins before the heart even arrives. The recipient is usually already on the operating table with an open chest when the heart arrives on ice.

The dying heart is cut from the body. And the donor heart is sewn into place. Then something miraculous happens. The new heart warms up and starts to beat on its own. The patient is taken off of the heart and lung machine that sustained him or her through the surgery, and the new heart takes over completely.

Surgeons then wire the sternum back together and stitch the patient up.

I’m probably oversimplifing the surgery a bit, because it does take hours and requires a large team of very skilled individuals — but that’s essentially the process.

Recovery from heart transplant is not nearly as quick. The risk of organ rejection is very real for every patient. So doctors destroy your immune system to prevent it from attacking the new heart. Unfortunately that makes you susceptible to all manner of illnesses, which in your weakened condition could kill you.

During the first six months to a year following transplant, you stay away from crowds of people and close to the hospital to take many tests that ensure your body doesn’t reject the heart.

Currently, I take about 28 pills daily to prevent rejection and infection and to counteract side effects of the anti-rejection medications. Over time, as I get stronger, the amount of drugs I’m taking will decrease alongside the chance for organ rejection.

But it doesn’t happen overnight. I have to be routinely tested for rejection at the hospital each week. So for the next three to six months, I essentially have to keep living in Utah, until I am stable enough to return to Idaho.

Being away from my family for that amount of time is certainly a challenge, but given the alternative — one I will happily take in stride.

So for the next few months, I will be here slowly recovering in Utah. But I have been incredibly blessed with a job that I can do remotely, so I will still be actively involved in bringing you the news every day.

Thank you for all the kind words and support. I’ve heard from hundreds and hundreds of you and drawn a lot of strength from your encouraging messages.

Eastern Idaho is full of wonderful people, and I can’t wait to return home!