Organ donor gives three lives

by Ken Donohue

Sitting on a couch in her living room, Debbie Summers, 38, starts to recount a story she has told many times in the past six years. It is a story about the giving of life. A story that begins in 1993 when she started feeling ill while working at a medical clinic. "It felt like the flu, but it wasn’t like a regular sickness," says Debbie. The next day she returned to work, but she was still feeling sick and was passing out on the bathroom floor. "I felt so hot that I put my face on the bathroom floor to cool off."

That night, her husband, Mitch, took her to the hospital where they told her she had a virus—probably the flu. She was told to go home and rest. When she got home, Debbie knew she didn’t have a "regular" flu. Her body felt like an ice-cube, but after a week at home she returned to work, even though she felt tired and her ankles were swollen. This went on for over two months until her lungs began filling with fluid, which is when Debbie checked herself into Royal Columbian Hospital. An x-ray of her lungs showed she had pneumonia, and at the same time doctors detected a heart murmur. After an echocardiogram, it was found that Debbie’s heart was badly damaged and was functioning at only 10 per cent. "To be honest, at this point I didn’t think much of it," she says. "I thought I would get better."

The following day, doctors told her that she would need a heart transplant. "I didn’t know much about transplants—I just cried for three days. I thought I was too young to need a transplant." As Debbie recounts, she says this was probably the scariest moment in her life. "My life had just been turned upside down, but I never thought I would die, but death was knocking at my door."

After spending a month at Vancouver General Hospital, Debbie was sent home and given some medication that would help her heart. Considering everything, she felt okay when she went home. The medication helped, but she knew that it was temporary—that life depended on a new heart.

Debbie was on the transplant waiting list for six months, and during that time emotions ran high. "I knew that when my pager went off I’d get a new heart, but I also knew that for that to happen someone would have to die."

When her pager did go off, Debbie was just putting dinner on the table. "They told me they had a heart and not to eat dinner," she relates. "It was exciting and scary—I just hoped I woke up after the transplant."

Debbie did wake up after the transplant, and she felt great as a new heart beat inside her. After just two weeks, she was released from the hospital but was scared to leave. "There is a sense of security in the hospital. I kept thinking, what would happened if the heart stopped?"

Well, Debbie’s heart didn’t stop, and with no rejection episodes, she was doing well, but doctors did have one question for her—did she ever want to have children? "I had always wanted to have children, but I didn’t want to think about it until I knew I was okay." Three years later, Debbie and Mitch talked about having children, so she consulted with her doctors. After weighing the pros and cons they decided to have a baby. Three months later, Debbie was pregnant. "I think I was the first heart recipient in Canada to have a baby after having a transplant, and I had no problems during the pregnancy."

Not content with just having one baby, Nicolas was born just four months ago, on November 30, 1999. "I often think about where I’ve been, and the fact I have two beautiful, healthy children. The transplant was a gift of life for me, and a gift of life for my two sons," says Debbie. "I’ve never been happier." For Debbie, life is so much more precious—she loves every minute of every day.

Debbie wants to thank her donor’s family. "I am so sorry for their loss, but by donating their loved one’s heart, they have created three lives. If it weren’t for their kindness I wouldn’t have a life to give life." She says that her family is very important to her. "I just hope I am here for a long time to enjoy my children growing up," says Debbie. With a husband, 13-year-old stepson, two-year-old, and newborn, Debbie’s new heart is filled with enough love to keep it beating.

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Organ donation is about building relationships

by Ken Donohue

When Universal Referral and Training was introduced last April, much was made of the referral component—ventilated hospitals are now required to report all brain and cardiac deaths to the BC Transplant Society for assessment. But an equally important part of this new strategy is the specialized training of hospital personnel to properly approach grieving families to discuss organ donation when their loved one has died.

Known as Designated Requestor Training, this two-day session is led by Margaret Verble and Judy Worth, of Kentucky.

One of the first times that Karin Petersen, now the Manager of ICU and CCU at Lions Gate Hospital, in North Vancouver, approached a family to discuss donating the organs of a loved one that had just died, turned out to be the most rewarding thing she’s ever done. "I don’t ever remember feeling uncomfortable about approaching the family," says Petersen. "Over the course of caring for the patient, I was able to build a relationship with the family. Sometimes organ donation is the only positive thing that these families can take away from a situation that is so sudden and tragic."

But while she has always felt comfortable approaching families about organ donation, she learned a lot from the training program. "I was surprised how tongue-tied I got when we role-played," says Petersen. "I had always felt comfortable and I thought I was good at it, but I came away thinking that I have so much more to learn about the questions that families will have."

Petersen says that Lions Gate Hospital is quite unique because many of the senior nurses feel very comfortable approaching families, so they’ve had a high consent rate over the years. But she says that Designated Requestor Training is extremely important. "There are a lot of new nurses who may not feel comfortable or are not coming equipped with ways to deal with grieving families."

Petersen says nurses are also entering critical areas much sooner than they did in the past, and laments the fact there isn’t a lot of senior nurses to act as role models. "The expectations on nurses today are huge, which is why it is so important to provide them with the necessary tools," she says.

One of the greatest things Petersen has learned in her 19-year nursing career is to help a family that says, "no" to organ donation. "Helping them, is just as important as helping those who say yes."

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Organ donation will provide the gift of life

by Debbie Francis

I have been thinking about writing this letter for some months now, but I find myself getting very emotional when sitting down to write. This seems to be a very good time to keep the message alive. You hear lots of stories about transplant recipients but not too many from donor families.

I lost my youngest brother at the age of 29. He suffered from some type of hemorrhage in his brain. This was totally unexpected. Here was this healthy young man in the prime of his life one day, and on full life support for the next four. Our family was of course very distraught and in shock, and those days in the hospital seemed never ending. The whole thing seems somewhat of a blur.

The doctors that worked with my brother did the best that their medical technology allowed them to do, for this I thank them. His situation was not improving, although they assured us he was not in pain.

This of course now leads us to the discussion of organ donation. There really was no question as to what we would do. We did not have all of his identification at the hospital but felt that he would have consented to being a donor. The loss of his life seemed so senseless to all of us at this time that it would have been even more so not to give someone else a gift that they so desperately needed. We found out later that he did indeed have a sticker on his driver’s licence.

I have always been a strong supporter of organ donation, after all, the situation might have been reversed and my brother could very well have been on the waiting list for the gift of life.

Although to be perfectly honest with you I never in a million years thought that my family would actually find ourselves in such a situation.

Recently I have been watching the reports on TV and in the papers and have been praying for little Sophia Pratico and her family. I do not know them personally but their situation just confirms to me and my family the importance of donation. It is very unfortunate that in situations like this someone must lose their life in order for another to get a new lease on theirs.

Please take the time to really think about this issue as you may one day find yourself or someone close to you in a situation of becoming a donor or a recipient. I know we don’t really like to think too much about stuff like this, but you never know what’s waiting around the corner.

If you do decide to become a donor please make sure you fill out the new registry card. You can pick them up at your doctor’s office.

My brother lived life to its fullest. He has left us with many wonderful memories, for this I am forever grateful. He was a very compassionate young man and would have given the shirt off his back; it is very fitting that in death he was still able to give. His gift was life and sight to five very lucky people. I pray that recovery is going well for them, whomever and wherever they may be. May they and anyone else going through this experience (donor family or recipient) be blessed.

Thank you all for taking the time to read this message

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Dear Donor Family:

It is three months now since your loved one died. I can’t begin to imagine how you face each morning or get through each day. I pray for you each day and thank God for you and ask this peace for you.

Almost twenty-six years ago we had a baby who almost died at ten days old but thanks to an inspired doctor he lived. At three weeks he had heart surgery. His early days were tough and I spent many nights lying awake planning his funeral. But he lived. At three years he had more heart surgery and for a little while he was able to live a life like any other small boy. But, as he grew, his heart got weaker and as a teen he was walking not running. At 17 he had his third open-heart surgery and this time he was told that they had done all they could. His heart was failing and in time he would need a transplant. He took lots of medication and tried to lead a normal life though it broke my heart to see him sit at home when his brother and his friends went off to play basketball. Things deteriorated steadily, the medications weren’t helping and the doctors said it was time to look for a new heart.

We struggled with the thought that someone must die to give my son life. I again lay awake at night thinking of that family who would go through so much pain, loss, and grief. But my son needed to go on that list. His hope lay in the midst of all that pain.

He waited for a very short while before the phone rang and he was told that a suitable heart had been found for him. We went to the hospital and he and I spent the afternoon together talking about nothing and everything; thinking of your family even though we will never meet you. We talked about hopes and fears. We laughed together and we cried together.

The next day we visited him in the intensive care unit and he was pink and warm, almost like a newborn. He was covered in intravenous tubes and linked to all sorts of machinery but things had gone well and he was full of hope.

Today he played eighteen holes of golf. Last week he went swimming. We try to walk every day. He doesn’t get out of breath. He doesn’t have to recover for two hours every time he walks. He has energy. He feels good.

There are no words for us to thank you. Your loved one and you have given us a gift that is beyond price. For the first time my son will be able to do as other young men do. He has the chance to live life to the full not just sit in the shadows.

You will continue to be in our thoughts and our prayers. Your loved one will never be forgotten, nor will your sacrifice ever be taken for granted. You are among the great heroes of our day and with all our hearts we thank you.

Yours sincerely,

A parent

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Operation what?

by James McLaren

Operation What? That’s a question asked by many each December in response to hearing the term "Operation Popcorn". You may overhear this term at the offices of the British Columbia Transplant Society or in hospitals throughout the Province. So, what is "Operation Popcorn"?

The process of organ donation and transplantation is long and complicated, and along the way there are many heroes, most, of the "unsung" variety. At the top of this list are the staff of the hospitals from which donor organs are retrieved. As there are only three hospitals in the province that perform transplant surgeries (all in Vancouver), outlying hospitals, and their staff, are faced with the emotion of losing a patient, but may never see the "living proof" in the form of a recipient.

Loretta Kane, Manager of the BC Transplant Society Retrieval Team, says it best: "Having been an ICU nurse before coming to the BCTS, I know how hard these nurses work. Most doctors and nurses feel some kind of personal failure when they lose a patient. The fact that their patient becomes a donor and saves many lives is a positive factor in a negative situation. We decided that we would do something to thank them, and let them know we appreciate the hard and difficult job they perform."

About ten years ago, Loretta came up with the idea of delivering huge decorative cans of fancy popcorn to the hospitals that provided donor organs in the previous year. This was greatly appreciated and the popcorn became an annual event. This show of appreciation made these "unsung heroes" aware that they were not forgotten and was a wonderful morale builder for these overworked staff members. The popcorn is delivered to the ER, ICU and OR of each contributing hospital.

Obviously, this venture is time consuming, and the Retrieval Team is always extremely busy and constantly on call. In the fall of 1998 Loretta approached me and told me of this yearly popcorn delivery, and asked if I thought it would be possible to arrange delivery teams comprised of recipients at each contributing hospital. This would be the icing on the cake, or the butter and salt on the popcorn, so to speak. It took little time to think about this¾it made sense. I began planning recipient delivery teams in Prince George, Kelowna, Kamloops, Abbotsford, Chilliwack, Comox, Victoria, Vancouver, North Vancouver and New Westminster. It didn’t take long before we had recipient teams lined up.

All involved realized this was something special, a chance for us recipients to deliver the popcorn on behalf of BCTS and also to say a personal thank you. Recipients have a huge list of people to thank for their "Gift Of Life" and many of these nurses we would never see otherwise. It was fun, and it was rewarding to be able to give a little back and experience the emotions not only of the hospital staff, but our own as well. I’m sure everyone who participated has a new appreciation for those who work "behind the scenes". Popcorn was also delivered to the Immunology Department, and the HIV Lab, in Vancouver. These people rarely get a thank you from anyone, especially transplant recipients. What began as words jokingly written on my notes, [Operation Popcorn] soon became the accepted term for the venture.

Loretta received a flood of calls on delivery day in 1998, and from then we knew "Operation Popcorn" was a huge success.

Involving the recipients was a very inspired idea. There was no hesitation from recipients asked to participate in 1999, and again "Operation Popcorn" created smiles on many faces.

The benefits of this program are many. For the donor hospital staff, it is a lift to their spirit and morale. This year when we arrived at most hospitals, staff recognized the popcorn buckets. They all seemed to be aware what was going on, and this awareness is worth more than anything. This whole thing is about saving lives, goodwill, and teamwork.

For the BCTS Retrieval Team, it is rewarding to know the staff are recognized. The goodwill and teamwork aspect is so important. Ed Ferre and Jan Emerton, both Retrieval Coordinators, told me that they see the results when providing in-services at hospitals around the province. Hosptial staff have always appreciated the popcorn, but the recipient delivery teams have taken things one-step higher. Gillian Murray recently joined the Retrieval Team. She was previously an ICU nurse at BC Children’s Hospital, and told me firsthand how the ICU nurses were very touched by the recipient involvement.

The recipients involved were treated to a very emotional experience, one they will remember and treasure as they continue their journey through life. Our sincerest thanks to Loretta for allowing us to be involved. It has been an inspiration to many of us and may this just be the catalyst to increase the number of recipients willing to volunteer with the Transplant Society. Any recipients who wish to be involved this year, please call Loretta Kane at BCTS (877-2100) or email James McLaren at: jamesmclaren@sprint.ca

One other benefit of "Operation Popcorn" may stem from some recipients’ first volunteer activity. Perhaps this experience will help recipients in writing a letter of thanks and appreciation to their donor family. Or visiting in person, or sending a card or letter to the hospital staff that cared for them during the transplant surgery process; thanking ER, ICU, OR staffs in their local hospital for their participation in the donation process. These tasks are difficult for some, admittedly, but the smiles and warmth you’ll receive will make it so rewarding and worthwhile. These people have done so much, and a personal thank you from us means more to them than we will ever know. We are the "Living Proof" and as such our visits to these people show them a very positive side of the transplant process, something they want to see.

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Transplant Research

The Validation and Use of an SF-36 Instrument
Comparing Expectation to Outcome in Patients
Receiving Renal Transplant

A two-year research study that measured health related quality of life in patients receiving kidney transplants, by comparing patients’ expectations with outcomes, was completed in February. In 1998, patients on the surgical waiting list for kidney transplants were sent two questionnaires (HRQOL – SF 36). The first measured current pre-surgical status while the second measured patients’ expectations of how they expected to feel three months post-transplant. A third questionnaire was mailed out three months after the transplant to measure post-surgery status.

"This type of study is clinically important because it evaluates people’s expectations using validated instruments," says Dr. Keith Chambers, one of the investigators, and the Assistant Director at the Centre for Clinical Epidemiology and Evaluation. "This type of validated instrument has never been used before in any patient population."

The BC Transplant Society did a previous study analyzing on average how well a patient is doing following a transplant, but as Dr. Chambers said that measurement isn’t all that useful in a clinical sense. "That type of measurement is good for program planning, but now we have a clinically useful tool in identifying patient’s who have unrealistic expectations," he says.

25 patients or 61 per cent of those who received a kidney transplant during the study period and completed the initial questionnaire returned the follow-up questionnaire.

The study concluded that patients did slightly less well than they expected on both the mental and physical summary score. Approximately 24 per cent of patients (six individuals) were identified as having unusually high expectations, and five of these individuals had outcomes below their expectations.

"This study is important, because it can be applied to individuals who have high expectations about their outcome after receiving a transplant, says Dr. Chambers. "Patients with unusually high expectations can be identified and reviewed clinically before surgery is undertaken."

The study was funded primarily from the Centre for Clinical Epidemiology and Evaluation and is being presented to the Journal of Urology for publication. "By having the study published in the Urology Journal, we will have a wider reach. What is neat about the study is that its been validated in the renal transplant population, but it can be used in other settings, such as prostrate and hip surgery."

An offer has been given to the BCTS to carry on and assess more patients to get a larger model. "The study has been demonstrated and the tools given to the BCTS, so it is up to them to give it to their clinicians," says Dr. Chambers.

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Survey says...

by Sally Greenwood

I don’t know if Richard Dawson, host of the popular 1980s game show, Family Feud, ever had any survey questions about organ donation, but in January 2000, the BC Transplant Society (BCTS) conducted its annual MarkTrend Public Opinion Survey to measure the public’s attitudes and awareness regarding organ donation.

This past year BCTS used "Your Driver’s License Is Not Enough" as its tag line in marketing and advertising initiatives with the hopes of highlighting that the decal was no longer enough and that one should register on the new computerized registry. Despite intense and consistent efforts survey results indicate more work is needed in this area.

The driver’s license decal is still the dominant method that people think of for indicating their intentions to donate with 69% of those asked indicating this as the method for registering their wishes. However, unlike the survey in 1997 and 1998, 17 % of those asked could name, unaided, the Organ Donor Registry as the proper means of indication.

34% of those asked have not taken any steps towards organ donation and 50% of those say they are interested, but just have not gotten around to it, while 25% are opposed and 25% believe they are not suitable donors due to poor health or old age. It is apparent that both the segment of the population (50%) who has indicated their wishes through other means (driver’s license, care card etc.) and those that are not opposed to organ donation, but have yet to register in any way, are the people we need to target.

Perhaps of greatest interest however, are the results uncovered regarding living anonymous organ donation. As found in 1997, people are much more willing to give a kidney to a direct family member who is in need. 81% of residents say they would definitely donate to their child with 66% willing to donate to their spouse and 60% to their parents. Intentions decrease when it comes to donating to other relatives and close friends (39% and 34% respectively).

When asked if they would be willing to donate to someone they don’t know but whose need they are aware of, 9% of respondents say they would definitely do so, while 7% say they would definitely give a kidney to someone they have never heard of, or know the case of.

Respondents were then read an extensive description of what kidney donation entails, including information on donor screening, risks, surgery and recuperation.

After being informed in this way, respondents were again asked how likely they would be to donate a kidney to the same list of individuals. Surprisingly. "informed consent" results for living kidney donation is remarkably similar to the levels for "uniformed consent", with levels dropping by less than 3%.

These findings bode well for our Living Anonymous Donation Study (LADS)—a study we will be following closely over the coming months.

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