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The Transplant Experience

A heart transplant is perhaps the most viscerally challenging of all surgeries, requiring the loss of a life in order to save a life; requiring, from the moment one is placed on The List to await the surgery, a long, delicate walk through an emotional minefield, creating in its wake long moments of introspection, doubt, fear and hope on a journey toward the return to a normal life that most understand.
At the same time, it is far from a normal life, coming as it does with its own unique concerns, apprehensions, and uncharted emotional diversions that only those who have been there can fully comprehend. These are the words of those who have taken this journey and of their caregivers.

"When I came to in the CVICU, I realized that I had survived. I remember thinking that I so badly wanted to see my kids and my Mom and Dad. It was very surreal. I was just ... so happy to be alive."

"Her determination and hard work brought her home to her children and family. She was walking and doing things we hadn’t seen her do in a long time. We felt truly blessed and could hardly believe our good fortune. She still had a distance to go, but we knew, with her positive attitude, she would make it."

"When he finally arrived home after two months, I took one look at him and knew everything was going to be fine. He wasn’t sick anymore and it showed. He still needed a lot of time to fully recover, but the worst was over and the best was just beginning."

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"Waiting for the surgery can be very emotionally draining. I’d been on the list three or four times before it became permanent. They gave me a Life-pager and I carried it with me for seven months - it never left my side. It’s constantly on your mind; wondering if it’s going to go off in the middle of the night; wondering if you’re going to survive long enough to hear it go off. Just so many questions going through your mind. Not surprisingly, you’re anxiety-ridden most of the time ... yet you really do try to keep on going with your everyday life. The waiting does get to you, so you have to have a very, very strong mind and a strong will and realize that your day will come; that the Life-pager will go off and you will get that call."

"My dad got a call at 3.00am from the police saying the hospital had been trying to get me and that they had a heart for me. ‘D’you want to go?’ he asked me. And I just looked at him and said, ‘Well, yes. Of course I do’ It was only much later that I consciously realized that, for that phone call to have been made, someone had died ... and we were a match."

"The waiting is tough to deal with. I was very, very fortunate in that I have a very strong family connection. Very little time passed without me constantly getting that family support. I was lucky. I always had someone there for me. My best friend lived across the street from me and she would stay with me sometimes until I fell asleep at night ... they all did an amazing job in trying to help me keep my mind off it."

"While you’re waiting, surround yourself with everything positive; get rid of negative thoughts ... you are going to make it .... keep yourself busy, have friends to keep you company, keep a very strong and open mind. You will make it."

"When you get to the hospital, and after they’ve run all the tests, you hope that the heart, the donor’s heart, will match your body; that this really will be the start of a new life. It’s the ultimate rolling of the dice."

"While the surgery is taking place you have to have complete confidence in the doctor who is doing the operation. The hospital is very supportive. They take the family to a waiting room, give you approximate time, around four hours or so, until the surgeon comes to see you with the news you’ve been anxiously waiting for. It’s a tough time, seems to take forever but, believe me, it’s worth the wait."

******

"As a relative waiting at home while the surgery is taking place, you have to be prepared to experience a very stressful time – even though you know the patient is in the best possible hands. You have to tell yourself over and over to think positively. But still you worry ... how will he be after the surgery? Will he be the same person when he returns? Will he be physically okay? And, yes, at first he was different. His attitude was strange ... he seemed angry, very abrupt, not the person I knew ... but I was able to rationalize it; he’d been through something so enormous, physically and emotionally, how could I possibly comprehend his experience. But quite soon he was back to his old self and I realized you have to have enormous faith."

"When you go to see the patient after the surgery you should prepare yourself for what happens in the ICU. When I first saw him I had to turn away and cry. He had so many tubes and breathing apparatus coming out of him he was almost unrecognizable. It varies from patient to patient but it can be a shock and you have to tell yourself it’s all for the good, that it’s the beginning of a new life. As they gradually remove all the stuff it’s like a flower opening into full bloom."

"When the patient is in Intensive Care they let you visit for 5 minutes every hour. Sitting in the waiting room, waiting for your name to be called, you start talking to people who are all in the same boat, all waiting to visit someone in the ICU ... and it becomes ... like an instant support group, all sharing a very special, unique situation."

"I started keeping a daily journal, starting from the time she left home to go to the hospital, recording things like what the doctors told us, how I was reacting, what she was saying as she progressed, observations about waiting for the results of the surgery, her day-to-day improvement. By the time she came home I had a small sized book of recollections and one day I gave it to her. She could read about that gap in her life ... and it also helped me during that critical period, made me feel better. It was great therapy for everyone."

"It was so good for me to hear my family talking to me while I was in Intensive Care. I wasn’t very responsive but I knew they were there, I knew on some sort of subliminal level I had come through it even though I wasn’t reacting on an emotional level. It’s really important to talk to patients ... they do know you’re there."

"After I came out of Intensive Care, I was in a room with four other patients who’d had a transplant of some kind – four people who were talking to me, encouraging me – so the support was ongoing and very reassuring."

"There was a moment when I thought, ‘Hey, you’ve joined a pretty exclusive club.’ and the enormity of it all began to sink in. It was quite an emotional moment."

"You should be prepared to experience some anxiety about coming home. You wonder if the care you know you’ll need is there for you; wonder if, should something go wrong, will there be somebody close enough to help you; wondering if the operation went as well as you think it has because you have such confidence in the doctors. But it’s just the natural uncertainty of things that causes the apprehension."

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"There are things you should have ready at home. Consider if you’ll need something like extended care. And you should have VON prepared and notified that they might need to come in and look after you. I had bed sores and they came and took care of them. But just knowing you have someone at home to help you upstairs, to help you into bed if necessary, to be able to help you prepare meals, is very reassuring."

"There’s a feeling of emptiness when you leave the hospital. In one fell swoop you’ve been cut off from a huge medical and psychological support team - your security blanket has been snatched away and it’s scary. Which is why your support team, your caregivers at home play such a critical role in your recovery."

"Leaving the hospital to go home can be a little nervous-making. The further away I got from the hospital I began to think, ‘Wow, this is pretty scary. What if something goes wrong?’ It’s like having two voices inside your head, the other one saying, ‘You’ll be okay. They wouldn’t have let you go if there was any real risk.’ ‘I think we should go back. I’m feeling a flutter in my heart.’ ‘Hey, suck it up, you’ll be fine.’ The thing is, you have to be positive, have someone with you to reassure you."

"There are practical things too that should be in place. An extended toilet seat, maybe have a rail installed if you’re not too steady on your feet. You need someone to help you in and out of the tub and you’ll need non-slip mats. Ideally, showering is better, easier on the body, but you’ll still need non-slip mats and a grip-bar. Most important is having someone with you all the time to watch over you, to make sure you don’t slip and fall."

"Hopefully your caregiver will be able to help you with all the things that need to be done. Help you with all the different medications that have to be taken – times, amounts – because you’re not used to preparing them. The hospital staff did all that and it can be confusing. You need someone to be able to go and grocery shop for you, to do the ordinary things that now seem so monumental."

"Once you come home you’ll probably have been put on a specific diet. You have to understand what is involved with that. Here again, the caregiver is invaluable in being able to guide you through what you can eat and you shouldn’t be eating. Making sure you don’t eat the wrong type of fats, especially trans fats; drinking skim milk instead of whole milk, watching sodium levels, especially sodium levels; all the things that will become a normal part of your new life."

"Rehab is very important and, hopefully, you will get a program designed for you. Because of some non-heart complications, I went to a rehabilitation centre where they had measured hallways, all kinds of apparatus, walkers, canes, everything you needed."

"Exercise is the key. It helps the blood get going, helps the heart get stronger. I walked and walked and walked and decided I was going to do everything I could to strengthen my muscles, my upper-body. I started doing light things at the beginning and then gradually increased the tempo and the amount. Along with your diet, exercise is very, very important – but let your doctor know what you are doing."

"Be prepared for a dramatic lifestyle change. Of course, it’s different for each individual, and being a transplant patient, you require a lot of rest. I needed help up and down stairs; it was quite a while before I could drive, not only because of the risk of air bags inflating, but because of the upper body movement required. The biggest change was that I couldn’t do anything physical for a year, other than trying to get mobile again, walking, but nothing too strenuous."

"We had to make sure she didn’t overdo it because, all of a sudden, she realized she had a new heart and she thought she could do anything she wanted. We reminded her gently what the doctors had told her she could do, what she shouldn’t be doing, that there could be a physical consequence that could harm her ... all the time remembering that she was going through a very emotionally fragile period."

"As a caregiver, I knew that I just had to do it. I didn’t think about looking after myself. I just did it. But ... it’s so important to have patience and a great deal of compassion; you need to be able to understand the patient’s mood changes and the different way they respond to things. A good sense of humour is a real plus. And you need to understand, really understand, that it’s a 24/7 responsibility and that you’re truly learning on the job. I mean, who has that kind of experience?"

"One critical aspect is the timing for giving the medications. They have to be taken at the time specified. If they’re not, there’s a danger of your body automatically rejecting. You can’t procrastinate, ‘Oh, another half hour won’t hurt.’ The recovery period is like walking a tight-rope. You can’t make a false move. Very scary."

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"I find it absolutely amazing that I have someone else’s heart inside me. It’s something that, five years later, I still struggle with. It was a year after the transplant that I really started processing things. Emotionally, it’s an incredible experience. I write to the donor family every year to let them know how appreciative I am, how appreciative my family is, that I’m still here, thanks to that family. We don’t get a response, and that’s okay. I just want them .... to know. But it’s something I think of every single day I do something, knowing that I’m doing it because I have someone else’s heart inside me."

"I knew I went into the hospital very sick, and I knew when I came out I was a lot better. It took me about six months to come to terms, to really come to terms, with the fact I had another person’s heart inside me, that it was keeping me alive. And for that I am really, really grateful. Some recipients have been very fortunate to meet the donor family and I think, for me, to do that would complete the connection not only emotionally but, in a way, spiritually, with the person who gave me a second chance at life."

"To meet the family of the donor, I would think, would be the final stage, an end to my story. But I don’t expect it to happen. Even so, emotionally it’s great for me all the time, knowing I have this heart inside me because a family, out there somewhere, gave their consent, at a very emotional time for them, for me to have a new life."

"I know I wouldn’t be here if I didn’t have that heart. In a way it’s like I am living someone else’s life. They say recipients will have heart transplant tendencies – you take on some of the characteristics of the donor. I sometimes feel that, in different ways; that I’m a better person, that perhaps I do things differently. I liked gardening before the transplant but, now, I’m almost a fanatic. I’m more aware of how people feel and how they react to me."

"I put out a hummingbird feeder and one of the things I love to do is sit on the deck and watch them feed or go into the flower garden, which I see now as truly a Garden of Eden ... watching them hover, absorb their brilliance. I really see them. And the Phoebes - their simple song takes on a new meaning. Things really are different – the days seem brighter, people seem different. Relationships are heightened, family members are drawn closer. I really see the goodness in people. It’s had a huge impact on me."

"One of the things about a transplant, any kind of cardiac surgery really, is that it focuses you, makes you aware of the fragility of life, and I think it makes relationships much deeper; you see them in a different light and realize just how fragile they can be. It presents a new aspect of your life and of the lives of the people around you. They start to look at things differently too."

"You know, just realizing how someone close to you was almost dead, who was given a new chance of life through a new heart; seeing that person flourish and start a brand new life, seeing that person learn to live again ... that’s awesome."

"One thing I’ve found is that, even years later, the emotional impact is as powerful as ever. When I talk about the experience I have this huge surge of emotions and the tears flow ... they come out of left field and I have no control over them; I have to stop what I’m saying until the moment passes. They’re tears, emotions, expressing so much, all wrapped in one huge passionate moment of .... thanksgiving, I guess, is the word I’m looking for.

"Support groups are wonderful, especially if you don’t have a caregiver or a close family member. If you go to a cardiac support group everyone there has had some kind of cardiac problem, from anything minute to anything grand, and they can help you. They can talk with you, cry with you, give you any kind of information that they have gathered throughout their own experience. It gives you a different outlook, a brighter outlook on problems in your life that seem so immense, that have enveloped you totally ... and the people in the group can bring you around, let you talk about your problem, give you advice. Support groups are a wonderful thing."

"When I walked out of that hospital, I thought

I’d climbed Mount Everest. It’s an amazing

moment, an amazing feeling, to know that you

made it."