A powerful journey from living with an artificial heart to a heart transplant....

Thursday, November 24, 2011

Provincial Volunteer Committee

I was very privileged to attend the PVC Conference on November 21. To see more info about the PVC click here. Hopefully my bio will be uploaded soon.
Many issues related to organ and tissue donation and Trillium Gift of Life Network (TGLN) were discussed. To name a few, Statistics, Bedonor.ca campaign, Community Grants, Donor/Recipient Relations, and much more. The most valuable part of the conference, from my perspective was not only learning what TGLN has planned, but also what the volunteers across the province are accomplishing. Cheers to the many volunteers!

Wednesday, November 23, 2011

Longest-living heart-transplant recipient talks on life

By Beverly Majors
See the article online here.

Charles Washington, of Oakridge, Tenn., is an amazing man, and he's had an amazing life –– and the fact that he is thought to be the longest-living single heart-transplant survivor has little to do with it.
Washington survived a massive heart attack, but his father, one of his brothers and one of his sons didn't survive when they also had massive heart attacks.
Washington well remembers the day he had his heart attack: Labor Day, Sept. 2, 1982.
"I thought I had indigestion," he said during a recent interview at his home. "I went outside and ran up and down the street two or three times, thinking it would help," he said.
He smiled a bit and said: "That was dumb. I collapsed in the yard. But I began to feel better. I went inside and laid across the bed. My wife came in and saw I was in terrible shape.
"She asked me if I wanted her to call an ambulance. When a man says 'yes' to that, you know something is seriously wrong." Being the macho man, Washington got onto the gurney himself, but on the way to the hospital, "I was in the most excruciating pain I've ever had."
He said when he arrived at the emergency room, an intern was on duty. He said the young doctor would examine him, then go look into a medical book, come back, examine him and go look again in the book.
"I was thinking, oh my God, he has no idea," Washington said.
The next morning, he was still alive. But the cardiologist told him on a scale of one to 10 –– 10 being dangerous –– his heart was at 9.5.
"That scared the dickens out of me," Washington said.
He spent the next seven days in the local hospital and, upon release, was told to "take it easy ... there's nothing we can do."
After contacting several hospitals around the country, Washington went to a hospital in Alabama for bypass surgery. He was told there that he didn't have long to live. During the surgery, the hospital experienced a power outage.
He said his family then learned that 12 trauma centers were doing experimental heart transplants. He chose The Texas Heart Institute at St. Luke's Episcopal Hospital in Houston. He had family there in Texas, but he had no safe way to get there unless they could find a private airplane.
In stepped Union Carbide Corp. and official Gordon Fee.
"I didn't ask how, but they got the plane," Washington said. "While the nurses were preparing me for the trip, an old lady, a nurse, said, 'I know you're going to be all right.'"
The doctors had discussed with him the possibility of his dying in flight because of the altitude. His wife, Eva, and son, Charles Jr., were there when he was put on the plane.
"I heard my son say, 'If the plane goes straight up, he'll be OK. But if it veers to the right or left, we'll lose him,'" Washington said as he choked back tears. He says when talking about the experience again, "It's almost like reliving it."
The plane went straight up, and for the next 17 days, Washington was between life and death, most times comatose. He lost 100 pounds. Then his physician, Dr. Denton A. Cooley, a heart transplant pioneer, came in with the news that a heart was available.
March 27, 1983, was the day Charlie Washington started a new life.
As he tells his story, he still sobs. He understands that the life he has was made possible because a teenager died a long time ago. That 18-year-old man's death is what 74-year-old Washington said "is one of the most civilizing things someone can get when you think about your relationship with God."
Washington received the heart of an 18-year-old Texas man, the son of an Exxon vice president who died in a motorcycle crash. That fact brings tears to his eyes and causes his voice to crack when talking about it even today. He calls it "an inner conflict."
"I constantly fight those demons. The fact that you have someone else's heart is that someone died," he said.
But he said he isn't alone in those feelings. Others who have transplants talk about it when they are all together for a reunion or other events.
"We have interesting relationships with each other and within ourselves," he said. "We have another person's living organ inside of us. You try not to think about it, but you do. You know it always.”
"I did well," Washington said. "The whole (home-town) community prayed for me and sent me letters. I had so many letters, one of the doctors asked me 'Who are you?'"
Washington stayed in Houston until August.
"I woke every morning and put on a suit and tie," he said, something he'd been doing just about every day as long as he could remember. "It made me feel better."
What's also amazing? Charlie Washington and his wife, Eva, have been married for 53 years.
"She was the most beautiful woman I'd ever seen –– even after traveling to the Far East," Charlie said with a grin.
The first time Charlie saw Eva was at a high school spelling bee. They were the only two left standing, and he intentionally misspelled his word so she could win.
"I fell in love with her the first time I saw her," he said. "But I never thought I'd see her again."
Charlie said, although they lived in the same county, they went to different high schools. Charlie joined the Air Force and when he returned home to Attapulgus, Ga., Eva was teaching. His mother tried to put the two together several times, but at that time, Charlie wasn't interested in a serious relationship, and he was only home on a 30-day leave.
But he gave in and escorted Eva to a teachers' ball. That's when he really noticed her beauty. Even though, he said, he was seeing two other women and seeing them all at different times on the same day.
"I was quite a handsome dude at that time," Charlie said. "I had suits made in Formosa with matching vests. I changed clothes two or three times a day."
But he married Eva. The couple moved to Oak Ridge, Tenn. in 1972. There, the couple raised three children: Charles Jr., Samuel and Charlotte. Samuel died a few years ago of a massive heart attack while helping move a refrigerator.
"I'm very conscious of life and death. If there was ever any apprehension about death, they're suddenly gone. It's much more about living," Charlie said.
Eva now also has medical problems and is undergoing dialysis. Charlie remains fairly healthy despite taking a "tremendous amount” of anti-rejection medicines.
But that's not all. The longest surviving heart transplant patient in the world has also had a kidney transplant. That was 16 years ago, and last year, doctors put a stint in his heart.
"So far, my prognosis is good," he said.

Saturday, November 19, 2011

The Gift of Life

Life Donation Awareness Association participated in the Kitchener Santa Clause Parade on November 19, 2011. I am so proud and thankful for all of the participation. I am honoured to be surrounded by wonderful individuals that contribute significantly to the success of the group and more importantly, to saving lives of those waiting for a life-saving organ and life-enhancing tissue. I commend each and every person that participated.
I want to send a personal special thank you to my family. I had the pleasure of 12 very close family members join me. It touches me very deeply to have strong supporters.

Big Bro-Derek
Dogs-Chili and Bunny

Friday, November 18, 2011

Finding the Good

I just heard from my transplant team. My biopsy from yesterday showed no rejection! Whoop! They have instructed me to reduce my prednisone to 2.5 mg from 5.0 mg. Fantastic!!

When I saw the docs Wednesday in Infectious Disease they told me that CMV was undetected in my blood work. This is very good because it means the CMV has been managed and my body has responded. There has been concern that it may bounce up and down since it often happens to other recipients with CMV. And they often remind me that I had quite a case of it.

There is a balance to managing an infection with rejection. So to help my body respond to the infection the docs took me off Cellcept (an immunosuppresive med) for about a week and then I went back on a reduced dose. I was on 1500mg and then my reduced dose is 500mg. Big difference. I was worried that I would show rejection but nope! My last biopsy had minor rejection but nothing to make a change for. So I found the good in my battle with CMV! Since I'm managing on the reduced Cellcept, I get to stay there!

Tuesday, November 15, 2011

TGLN 2012 Calendar

Last year, I was Miss December in the TGLN calendar. The significance of my feature was to ask for a heart, for medical professionals to recognize a situation in which organs could be available and make the call to save a life.
I always thought it was interesting that I was in December and then I got my heart in December...
Anyway, in keeping with a positive theme, TGLN asked me to be on the cover of the 2012 calendar. I thought this was nice to thank the support teams for making that call last year. My good friends Pam and Janet are featured in December for 2012. They are both on LVADs waiting for their call. Maybe it will be December for them too! We never know when that call will come.

Provincial Volunteer Committee (PVC)

I am so excited to announce that I have been invited to be one of the newest members of Trillium Gift of Life Network's Provincial Volunteer Committee! I am very honoured to be on this committee sitting with so many other avid volunteers representing organ and tissue donation across the province. Being one of only about 16 members around the entire province is a prestigious role. I feel this is a real tribute to the efforts I have put forth over the past while.
To learn more about the PVC visit here.

Monday, November 14, 2011

Video for Toronto General Hospital

I had the pleasure of making a video for TGH Foundation for the holiday season. Here are a couple of snap shots with my surgeon, Dr. Viv Rao and my cardiologist, Dr. Heather Ross.

The video is on You Tube here.

Tuesday, November 8, 2011

Recent Heart Transplant News

Heart transplant survival rate improving over time; Study finds chances of remaining alive up 20% since 1980 – the Guelph Mercury; written by Anne-Marie Tobin of the Canadian Press; Monday, October 24, 2011

Survival rate improves for heart transplants, Canadian study finds – the Waterloo Region Record; written by Anne-Marie Tobin of the Canadian Press; Monday, October 24, 2011

Health: Heart transplant survival rates improving – the Globe and Mail; written by Anne-Marie Tobin of the Canadian Press; Monday, October 24, 2011


Heart transplants are still anything but ordinary, but doctors these days have a much better handle on the outcomes for this extraordinary type of surgery.

A long-term study to be unveiled Monday at the Canadian Cardiovascular Congress in Vancouver looked at heart transplant results since 1984 at the University of Ottawa Heart Institute, covering the follow-up on a total of 461 patients.

"Despite being a very involved and complicated program, heart transplant is a very successful form of treatment," said Dr. Marc Ruel, surgical director of the heart transplant program at the institute.

Without a transplant, he said the patients would not have lived one more year.

But with a transplant, the survival rate over the period of the study was 86 per cent after one year, 75 per cent at five years, 62 per cent at 10 years, and 36 per cent at 20 years.

The younger the patient is at the time of the transplant, the more successful the outcome, the study showed.

"We had a patient who was still followed at 25 years and four months, so that's the longest survival we've had, but many patients are still alive well beyond 20 years, and hopefully we'll have solutions to keep them alive for a long time," Ruel said.

The oldest person receiving a heart transplant in the study period was 74, and the youngest was 18.

Transplants can be done after age 65 with good results, but doctors have to carefully make their selections in order to avoid patients with other significant illnesses that would compromise lifespan or quality of life, he said.

Modern heart transplantation became available in 1980, and the study found that survival rates have improved by more than 20 per cent in the years since.

"Eight-year survival since the 2000s is close to 90 per cent; 89.3 per cent to be exact. So this really sets a very high standard for other series to be compared upon," Ruel remarked.

An international registry of heart transplants finds that survival is expected to be about 67 per cent at seven years, so the results in Ottawa compare favourably.

The first human heart transplant was done by Dr. Christiaan Barnard in South Africa in December 1967. The patient lived for 18 days, and died of pneumonia.

Friday, November 4, 2011


With great success, comes great challenges. - Unknown

Now that I'm somewhat caught up on posts, I can take you back to my most recent challenge.

Looking back to mid-September, I was working about 23-25 hours per week and feeling very tired. I was having difficultly eating regularly because I often felt nauseous and "things" weren't moving quite right. I attributed it to over-exhaustion and tried to slow down a bit. I called my transplant coordinator and told her that I just don't feel normal. I couldn't place any real symptoms to cause concern and we both thought I just needed to slow down. Our conversation was very meaningful and I gained much from it.

I said, "I don't know what's going on. I just don't feel normal. I want to feel normal again."

Nurse said, "Andrea, you aren't normal, you never will be normal."

She added that my life has changed drastically. I am not the same person that I was before all of this happened to me. As I go back to work, I expect for everything to just happily fall into place. That is not the case anymore. She told me that often patients need to grieve the loss of the person they were before all the health challenges and come to terms with the new person. Now that I understand the capacity of my life change, I can move forward. I truly appreciate the honesty of my transplant team.
After about two weeks of feeling this way, a new symptom began. I had painful cramping in my abdomen. This was a sign that something else was going on. The next day, the pain did not subside so my transplant coordinator suggested that I seek professional advice at a hospital. I decided to go to St. Mary's Emergency in Kitchener. They took a few tests and couldn't find anything and so I went home with pain killers. The next day, the pain was worse. I decided to go back to Emerg because obviously there was no solution. My transplant coordinator specifically requested a CMV PCR test to be collected. This was taken and I went home again to wait for the results.
What is CMV?
As you know, I'm not a medical professional, but I can provide a brief summary of my interpretation of CMV. Cytomegalovirus or CMV is common in 60-80% of the population by age 40. It is a virus that is typically harmless. If a person of normal health contracts it they may feel unwell for a day or two, such as added fatigue or upset stomach. It is often confused with a touch of a flu or a cold. For those of us that are immuno-suppressed, it requires treatment. To find out more about CMV in organ transplantation visit here.

I already knew that I was at risk for CMV because my heart has a history of CMV and I do not. It's called donor/recipient mismatch. We knew that it could pass over eventually. However, I was not very clear of the symptoms to expect. As a transplant patient, or any patient with health challenges for that matter, we go through a stage of denial. (I'm working on shortening that stage.)
So the test results came back the next day and guess what.... it was CMV. From what I understand, my team will tolerate a test result of less than 100 copies and treat at home if the result is less than 500 copies. Well. My result was 27,800 copies! That's really high! So my nurse did not hesitate to say, you need to be admitted to hospital, now. And pack your bags because you will be a while.

Off we went to Toronto General Hospital, 7th floor. As much as I don't like to be away from home, I felt relief because there was an answer and it's treatable. I had a great room too! Three windows! Two looked out to the Atrium and one looked out to University Avenue. I couldn't complain. I was in hospital from October 5 - 14. I find it kind of funny because I was in hospital for 10 days after a heart transplant, and 9 days for CMV treatment. Interesting.

So my test result on Tuesday was 27,800 and they did another test on Wednesday...one day later...you won't believe it...79,000!!!! Unbelievable. They said that would be why I was severely symptomatic.

After the hospital stay, I was sent home with home care nurses to continue IV Gancyclovir for an unknown amount of time.... This is attached by a picc line (Peripherally Inserted Central Catheter) in my upper left arm. The medication runs 24/7. I felt like being connected to my LVAD again, only that everything is on the left side this time. It really messed with my mind! I got tangled in the tubing because I kept removing it from my right side....dah.

Here are some of the test results to show my progress:

October 4 27,800
October 5 79,000
October 12 21, 500
October 17 10,000
October 24 650
November 1 <100

If I get another good result this week then I'm off the IV! Yay! But the treatment doesn't end there... I will be on the oral version, Valgancyclovir for an unknown amount of time. It also requires time to allow my body to recover from CMV and from experiencing the challenges of having a severe virus in general.
There is a balance of infection and rejection. To allow by body to heal and create antibodies against CMV, the docs have reduced my anti-rejection meds. I had results of rejection at my last biopsy but nothing we can't handle.
If I can finish this post with one piece of advice, it would be to listen to your body. Something wasn't right and I persevered to figure it out. People like me with a significant health challenge need to take minor symptoms seriously. Really this is advice for myself... I need to realize that seeking medical attention is not a lack of strength but a matter of honesty.