Happily Signing Off... Because Transplants Work!!

Well hello again! It's been a long while!

Firstly, a big thank you to those that have watched my blog through my journey. You have all been wonderful supporters and mediums to sharing the message about organ donation.


A brief summary of the past while...

I'm back to work full time! That's right. I'm contributing to society again and happily paying taxes. No excuses. It feels really great to be a part of something and to be relied upon. I started back at the 6 month mark, which may have been too early. I ran into some first-year challenges that forced me to take time off again. Once I got through that first year everything was much smoother. I have one more year to go and I hope to apply for my Professional Engineers of Ontario license. A big milestone in my career!

I went on a cruise with my family! That's right. My first trip outside of Ontario since before my journey began. It was a little stressful being prepared with all the medications and letters and insurance, but we made it. And wow, was it ever a great trip! My Mom and Dad took us on the Carnival Pride cruise ship for their wedding anniversary celebration. It was Mom, Dad, my big bro, Derek, his awesome wife, Vicky, Shaun and myself. It was some wonderful family time with tons of fun had by all! Here we are at Cocoa Beach in Port Canaveral, Florida.

I participated in the Canadian Transplant Games hosted in Calgary by the Canadian Transplant Association (CTA)! For those of you not aware, every other year CTA hosts Transplant Games in Canada that are made for transplant recipients to compete in Olympic-style events. This is a way for recipients to show the country that transplants work. This was my first Games and I brought home three gold medals and a puck for a win in the East versus West floor hockey game! I participated in 20km cycle race, 3km race walk and bowling. I had the great pleasure of meeting individuals from across this wonderful country that have been touched by transplants in their own way. The love and zest for life amongst these people is contagious! I also had the great pleasure of attending with my strong team of supporters. Mom, Dad, Shaun and Derek cheered me and my heart on for the win! I plan to attend the next Canadian Games in 2014. Can't wait! For more information on CTA, please visit their website at www.organ-donation-works.org. Here's a great pic of my supporting team and below, the winning East floor hockey team.

The Life Donation Awareness Association is a very active and successful awareness group. I am so proud to say that the individuals that have joined together to raise awareness for organ and tissue donation in our community have contributed to the increase in registration by about 5% over the past couple years! With the addition of beadonor.ca and media pushes from Trillium Gift of Life Network, we have grabbed on to the attention and been a part of many events throughout the community. My measure of success comes when I visit a random place with my organ donation paraphernalia and someone says, out of nowhere, "I just registered!" Or, "I heard a speaker about organ donation just a little while ago!" What a great moment. We are making an impact.  There are now five chapters of LDAA! Our Midwest group, Niagara (Mom's group - Go Mom!), Oxford County, Hamilton/Burlington and Wilmot Area. Unbelievable! Such a tribute to our success. Here we are at the Cambridge Canada Day Parade 2012.

Let me tell you. It's really hard to summarize the last while because it has been such a wonderful life to live. I don't want to jinx anything, but I really have my life back. I'm on track with where I left off with so much more in my life. At times I feel resentment for what has happened to me but these days, those moments are few and far between. This transplant has given me a FULL life back. I went in with a broken heart (literally) and came with not only a beautiful donor heart, but stronger relationships with my family and friends, new friends and new experiences. There is so much life to be lived!!!

Since this will be my last post I want to pass on some of the lessons I have learned through my journey.

• Never underestimate your own strength. Life is made up of 10% what happens to you and 90% how you respond.  

•  Enjoy every moment. Do the things that you love and never waste your time.

• Surround yourself with people that lift you up. And lift them up too. Happiness, smiles and positive energy are contagious.

• Be thankful for the love that surrounds you. It is your family and friends that get you through those really hard times. Let them support you and support them back. This is their journey too.

• Transplants work! Not only do they give life back, they give a FULL life back.Share the message!

• Specifically to donors and donor families, thank you for giving selflessly. You are all heroes.

My deepest appreciation to every one of you that has contributed in any way to the success of my journey. Even those of you that simply said a prayer when things were scary or sent a little message that made me smile. Those of you that have been there for me in a bigger way, you know how much I appreciate you.

Shannon - You started my blog and helped me reach out to all these people! We have connected through this journey and became greater friends. Thank you for understanding my challenges.

Mom and Dad - This is your journey too. You have overcome many challenges of your own. Our journey has been difficult but our relationship has strengthened because of it. Even though I'm not laying in a hospital bed or attached to wires and machines, I still need you. Not in same way, but just as much.

Shaun - You are my true hero. My strength. My reason to look forward. You have always been there right beside me and knew what I needed before I knew I needed it. You have strength and patience that has been exactly what I have needed and continue to need. I cannot summarize all you have done for me in one paragraph but I can say thank you. I am deeply looking forward to growing old with you.

Love to all of you from the bottom of my second heart.

 

I'm 1 year old today!! Poem from Shannon

Shannon wrote this beautiful and touching poem for my one year Heart-aversary.

To my amazing sister Andrea on her one year anniversary......

A year ago the call we had been waiting for came through
Time seemed to stand still as we waited anxiously
To get word that this was the perfect heart for you.

I will never forget that moment when I heard it was a go,
The tears immediately began flowing
My joy and excitement was more than you even know.

I couldn't stop jumping up and down and screaming YES!
I remember Ashton watching me,
Thinking I was crazy and emotional I would guess!

Thoughts of the donor and their loved ones came my way,
Somewhere a family was saying goodbye
Giving a gift that we could never ever repay.

You were definitely given the absolute perfect heart
And for this we are all so very thankful.
We knew one day it would happen, right from the very start.

Andrea, I love you very much
And I am happy to celebrate your rebirth-day!
And can't wait to see you continue your journey of life

XOXOXO

A Dedication to My Husband

I would like to dedicate this song to my husband, Shaun. He has been my hero, the reason for living, and has caught me every time I fell. You never let go. Thank you always.
Click here for video.

Rascal Flatts – I Won’t Let Go

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone

I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall

Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont

Back to Work...again...

I'm happy to tell you that I have, once again, returned to work! Yay!
After two months off to recover from the CMV infection, I am back at it.
Big thanks to my awesome co-workers and supervisors for all of their kindness and understanding.

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!

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.

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.

Hubby-Shaun
Mom-Carol
Big Bro-Derek
Nephew-Owen
Neice-Mya
Mom-in-law-Dianne
Dad-in-law-Steve
Sis-in-law-Shannon
Nephew-Ashton
Nephew-Lachaln
Dogs-Chili and Bunny

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!

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.

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.

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

http://www.theglobeandmail.com/life/health/new-health/health-news/heart-transplant-survival-rates-improve-study/article2210951/

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.

CMV

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.

Welcome Lachlan!

I would like to send a very warm welcome to a new member of our family!

LACHLAN BENJAMIN

My sister-in-law, you all know Shannon, gave birth to a beautiful, healthy, full term baby boy on September 5th, 2011. At 7 lbs and 11 ounces and 19 inches long. Yippee!! This brings big excitement to me in two ways.

The first and most exciting is because Shannon has had many pregnancy challenges in the past. To finally have a healthy full term baby is a dream come true for our family. Big brother Ashton was born at only 24 weeks. He has his challenges but he is the happiest kid ever! Shannon, Jeff and Ashton deserve all the happiness in the world and I can't wait to watch their family grow.

Second, let's do some math people. Lachlan was born at 38 weeks and 6 days... Get your calender out. That's brings us back to.... Hmm... what's the day??.... December 21st, 2010...wait a minute... that rings a bell....WHAT!! That's right!! That's the day I got my heart!!! Seriously people. When I got the call at 3am, we packed our stuff, called my parents and got on the road. As I was on the road I called a few other people on the way... Gee, sorry to wake you Shannon and Jeff!! HAHAHA!!!