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!!!

Back to Work

Well, now that I've passed 6 months, I'm ready to return to work! Yippee!

Some of you may not know what I do. Well I'm a Civil Engineer. No, I do not drive trains. Ha!

I went to the University of Waterloo for 5 years in the co-op engineering program. I graduated with a Bachelor of Applied Science in Civil Engineering. Yes, I'm a geek. And proud! I decided to specialize in transportation. After graduation, I got a job right away for McCormick Rankin Corporation. What a great place to work! The people are wonderful and I enjoy what I do. I worked for just barely over 1 year before I was diagnosed with heart disease. You wouldn't believe the support I received from from everyone.

So you are probably wondering, what the heck to you do? Well, I design roads and highways. To put it in simple terms. We will design and administer the reconstruction of old roads/highways as well as the design and administration of new roads/highways. It may sound a little boring to you, but it is quite involved. There is a lot of project management and hands-on design. When I first started I spent most of my time in AutoCAD doing Civil 3D design. Since returning I have spent much of my time assisting in project management. It's great getting a taste of everything.

Here's a pic of MRC's big project in the Region of Waterloo. It is an extension of Fairway Road in Kitchener over the Grand River to Kossuth Road in Cambridge. There is a long-span girder bridge and two roundabouts. I don't do bridges though, just road design. Check out the concept pics here.

I am working towards my PEO license, Professional Engineers of Ontario. With this license I will be able to stamp drawings and take legal responsibility of my designs. To achieve this license I need four years of experience. It's a little frustrating because I lost three years.... but I'm back on track. I have one year of undergrad experience and one year before I went on disability. So I have two years left. I will get there!

I went back to work on June 20, 2011 on a gradual basis. I started with about 6-8 hours per week and then increased about 2 hours per week every two weeks. It's pretty slow but I have been through quite a lot and adjusting to the schedule has been a little challenging. When I hit about 20 hours or so, I got a little pooped out and it caught up with me. I just slowed it down a little and worked through it. I am just so happy to have structure and purpose in my life again! I worked so hard to earn my degree and get where I am, it's nice to put it all to use again.

Summer Vacation

We finally got to have a summer vacation this year!!! I got to swim and run and canoe and fish... and not worry about getting wet! Or being far from the docs. Yippee!

My family cottage is on the Grand River near the mouth of Lake Erie in Dunnville. The family has been there for years. My Dad's grandfather, Gramps as we called him, built the cottage with his bare hands. Well, it has certainly grown since. It now has 5 bedrooms, a flushing toilet and flowing water. But it's not about the building to be honest... It's a place that we can go to be with family. It would be very different without the cottage. I love seeing my family throughout the summer and having a wonderful place to enjoy each other.
Mom and Dad got a new family boat this year! It's awesome! I never missed an opportunity to go tubing with my niece, Mya and my nephew, Owen. I never missed an opportunity to swim either! Such a great summer! Thanks Mom and Dad!

The new boat! And Owen, Mya and Uncle Shaun.

My hubby skiing!

Auntie A and Mya tubing!

Uncle Shaun loading Owen into the tube!

We are so lucky, we have a second family cottage! Whoop! This one is much farther away and tougher to get to. But oh so relaxing. The Clegg's have a cottage up in Golden Valley, south west of North Bay. It takes about 5 hours to get there from our house. The cottage is boat access only and no cell reception. So you can see why I didn't want to go up there while I was sick and waiting for a heart. But we finally got there! Yippee!

Shaun fishing off the rock while Sadie watches in eager anticipation.

Yay! I caught one!

I can't believe you left without me....

Chili is not a big fan of swimming... but with his thick coat he was relieved from the heat!

Ah...much better...

Happy 6 Month Heart-versary!

On June 21st, 2011 I was proud to say I hit the 6 month milestone. (sigh of relief)

Six months is a critical point to pass from a health perspective after a heart transplant. I felt that I could actually say I was feeling good. It was a rough road but I had passed the worst.

On the other hand, this was an emotional day for me. To be honest, I forgot it was the day 6 months after transplant until something brought my attention back. My heart had one somewhat unusual strong beat. After that, I thought for a moment and realized. Six months ago I was given the gift of a new heart.

I didn't feel like having a big party or eating a big cake. I didn't feel like inviting all of my loved ones over. I felt like this was a time between me and my donor. I've been thinking, instead of referring to him/her as "donor" I would like there to be a name. How about Sam? It can be male or female. I've always liked that name. So today was a day between Sam and me.

There are two things to say to Sam right now, I'm sorry and thank you.

From the bottom of our heart.

LDAA June Update

The Life Donation Awareness Association had a very successful month in June! I thought I would share some of the highlights.

St. Mary's Bike and Hike for Heart - June 5, 2011
LDAA was given the opportunity to host an awareness/information booth at the St. Mary's Bike and Hike for Heart event at Waterloo Park. It was a beautiful day! Of course, I had to participate in the bike again with Shaun, Mom and Dad. It has become a special tradition. I left the booth to my wonderful transplant friends and they had great success! They were able to provide information to many people throughout the day.


I Skydive So Others Can Stay Alive - June 18, 2011
Well I had mentioned the fundraiser my Mom initiated before in an April posting. It was amazing!!! The 5 divers and family/friends raised about $6500 for Toronto General Hospital! AND LDAA earned about $500 by hosting the barbecue and a raffle draw! WOW!!! Thank you to everyone that made a donation and participated in the fabulous day.

Matt (Rick's son, Rick is waiting for lungs), Karra (Dana's step daughter), Dana (Heart+double lung recipient), Carol (Momma) and Paula (Rick's wife)

Practicing the safe landing!

Carol and Skymaster Chris

Cambridge Canada Day Parade - July 1, 2011
So apparently Cambridge hosts the largest Canada Day parade in Canada. Hmm. Who knew. Anyway, some good friends and members of LDAA planned/designed/created a fabulous float! It was a beautiful day! I'm sure our cause touched many people that day.

Our Awesome Float!

Ready to march!

Shannon, Ashton (Andrea's nephew) and Missy

Andrea and Madeline

It's hard to believe how much LDAA has done in the little time it has been established. I'm so proud of all of the members! Great job everyone!

I'm back!

Alright. So let me explain a little something to you.

First of all, my apologies for so quietly deciding not to blog for such a long time. It's been, what, 5 months? Wow. When I started blogging my expectations were that I would get my heart, share my story about recovery and then stop blogging and return to my normal life, which I didn't expect to be interesting to all of you. Well, I'm sure that part of my life is not all that interesting but I've had a revelation. Ready?

My life is not normal and it will never be normal.

Now that's a revelation. Maybe you are thinking, I could have told you that Andrea. Maybe you should have because I wasn't thinking that way. Now let me be clear, I'm not dead, so let's not under appreciate the circumstance. However, my life has really changed. Not just in a physical sense, in an emotional sense. My all-wise transplant nurse gave me that revelation above and also told me that I may need to mourn the loss of the person I was before transplant. I guess what I'm trying to tell you is that I'm back to share what life is like after a heart transplant. There are some great moments and there are some tough moments. I hope to impress you with what I can accomplish and remind you that transplants really do work.

Before I start writing to share all my updates of late, I would like to thank those in my life that have helped me along the way.

My husband. You have never left my side. You have always understood my challenges and known exactly what I need. I don't know how you had so much patients during my high-prednisone days, but you always came home to me and made me feel loved. I hope to give you back the life we have worked so hard for without the constant worry of tomorrow. It will come. I'm so proud of who you are and how you have embraced life. I love you always.

My Mom and Dad. I know, the better I get, the more you feel that I don't need you. But I will always need you. More than you know. I may not always need you to sit at the hospital with me or to get me my slippers but I will always need your love and support. Thank you for giving me that unconditionally.

Mom and Dad C. I'm so lucky to have such great outlaws. Thank you for helping us through our tough times and most of all, thank you for being there for Shaun when he was always busy being strong for me. I truly appreciate your investment in our cause and the support you give. xoxoxo

Derek and Vicky. I'm so glad you are right around the corner. I know you are a very busy family but I really appreciate the time you take for me. Being around when I need some uplifting and help around the house. We had a great summer at the cottage! I loved seeing so often.

Shannon and Jeff. We have grown closer through this challenge. I've said it before. It's unfortunate we have to go through these things, but I'm thankful for the opportunity it's given me to establish our great relationship. Learning from your strength and understanding has helped so much along the way. I'm so excited for the new experiences to come!

All my supportive friends and family. Just because I can't name you all individually, doesn't mean you have not played an important role in my life. You know who you are. Thanks for being there for me and just showing your support in whatever way you do. I feel so much love.

Enough of the gooey stuff.

Beadonor.ca

I would like to say it's the best thing since sliced bread... but I think I'm gonna say, It's the best thing since the LVAD! LOL

Beadonor.ca

Organ and tissue donation is entering the 21st century. You can now register your consent online. You read it right! ONLINE!! This will drastically change the transplant community and save more lives. Making registration easy is a big step that will spread across the province. Thank you Service Ontario and Trillium Gift of Life for making this happen.

Check out my video! Grab your tissue... they did a really great job.

Another great feature to this website is that anyone with a health card and birthday can check if they are in fact registered. I have had many questions from family and friends as to when they will actually receive confirmation that they registered. Individuals are supposed to receive a new health card (if you currently have a new card) that says "donor" on the back and those that have old read and white cards would receive a sticker in the mail. People that registered over a year ago, maybe more, have still not received anything. This website can confirm that you are in fact, registered. If your name is in the registry, that's the important part. Having the sticker or word "donor" is not the important part, it's only for aesthetics.

Please visit the site. Share the link with others. Like it on Facebook. Tweet it. Whatever you do. Just spread the word.

I would also like to brag about the Life Donation Awareness Association!! Three of us are featured for this website! We are making a difference.

Ryley, such a cute, very polite and wonderful young girl, had her heart transplant at 7 months old. Her wonderful Mom, Joanna is a very avid member and promoter of the cause. She has reached out in many ways and continues to impact many lives.

Carol is also an avid member and a wonderful mentor to me. She has been incredibly helpful to get the group active and has run many events. I can't wait to see what else she has in store for the new year!

Biopsy #10

Well I had a biopsy last Thursday in Toronto and then saw Dr. Ross. My pressures are great! And I only showed a 1A rejection. While it's not zero, they still decided to reduce my prednisone. Yay!! I am now down to 10mg per day. This gives me hope that I will eventually be completely off the prednisone. Knock on wood.

I was told that I'm not drinking enough fluids. And water is not enough. Dr. Ross suggested I drink Gaterade, especially on the really hot days. It seems every time I go for a biopsy I hear the same thing... drink more fluids and eat more salt. I have a laugh every time. But seriously, I need to discipline myself to drink more. I will work on it.

I Skydive So Others Can Stay Alive

How many Mom's will jump from a plane to support their daughter?? MINE!!

Carol, my Momma, is planning a fundraiser to raise money for Toronto General Hospital, specifically for transplant and mechanical heart research. The reason I am alive today. She will be skydiving at the Niagara Skydive Centre on Saturday June 18th. This is a small way we can show our appreciation for the hard work that has been done for our family.

Over time we have actually created a great team to jump with my Mom. I'm really excited!

Carol, my Mom
Steve, my Father-in-Law (maybe)
Dana - heart and double lung recipient
Janine - her father passed away and saved many lives by donating his organs
Paula and her son Matthew - Paula's husband is waiting for lungs

Our intent is also to raise awareness for organ and tissue donation. The Life Donation Awareness Association will host a booth at the event to share our cause and get conversations started. Jumpers have contacted local media and vendor support.

Please visit http://www.tgwhf.ca/sites/testyourlimits/skydivingforandrea/index.asp for more details and to make a kind donation to this life-saving hospital. It is important to note that all monies donated go directly to the hospital, the jumpers pay for their own jump.

I would like to take a moment to tell you that I have the bestest Mom anyone could ask for. She has been right beside me through my whole journey. She has altered her lifestyle to support me in every way. I haven't been the easiest daughter to deal with over the past while, which I'm sure you are all so surprise to hear, haha.... But my Mom has tolerated my moods very patiently and never made me feel like I was a burden. And to top it all off, she's jumping from a plane!! I joke that I would like to go up with her to push her out! That's my way of encouraging. I'm not gonna lie, it still makes me a little nervous, but it's something she has wanted to do for a long time and I support her dreams 100%! Thank you for being a great Mom. You are where my positive perspective comes from and my desire to help others.

We are hosting a day at the skydive centre in Dunnville and we would love to have anyone come out to support us and watch everyone land safely. Your support is very important on a personal level and also as a mission in my journey. Saving the lives of people that have traveled a path such as mine gives me strength to face my challenges with my head held high. This is my passion and with your support we can make life-saving a reality.

Thank you from the bottom of my second heart.

100th LVAD Celebration

What a milestone! One hundred lives touched with the use of a mechanical heart. I am proud to be one of those lives.

I was kindly invited to the 100th LVAD Celebration at Toronto General Hospital on May 11th, 2011. I was also given the pleasure to speak about my experience and express my gratitude to the medical staff and financial donors. Here are some great pics:

My hubby, Shaun and me.

My Mom, Carol, Shaun, me and my Dad, Dave

Dr. Viv Rao, heart surgeon, me, Dr. Heather Ross, cardiologist, David, another LVAD patient

LVAD patients in attendance

LET LIFE GO ON

To remember me...

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying.

At a certain moment, a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine.

And don't call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes a woman.

Give my heart to a person whose own heart has caused nothing by endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body, and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.

Give my sins to the devil. Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

Robert N. Test
Cincinnati Post, 1976

Yippee Skippee!!!!

GRADE ZERO REJECTION!!!

Transplant Trot - London

The Transplant Trot was in London today to support Canadian Transplant Association (CTA). We walked or ran 5km in support of organ and tissue donation. Members from the Life Donation Awareness Association were a part of the event. It was a fantastic day! We wore our own t-shirts with our logo. CTA hosts the transplant games and raises awareness for organ and tissue donation.

Organ Recipients


This is Ryley, a sweet 5-year-old that had a heart transplant at 7months old. She was a part of the Trot with her Mom, Joanna and brother Landon. It was a pleasure to meet this family!

Back: Cathy, Janet, Glen, Bob, Dana, Grant

Middle: Betty, Josie, Andrea, Carol

Front: Joanna, Ryley, Kate, Chili, Shaun, Sadie

Go Team!!