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

Thursday, April 29, 2010

What you can do TODAY.

Yesterday I was in Niagara Falls with my parents. I was scheduled to do a talk for an elementary school to kick-off Jump Rope for Heart. Who better to teach them a few things about heart disease, than someone with heart disease.

The students were very attentive and interested. Of course, free stuff always helps. I tossed little sponge hearts to kids that answered my questions correctly. (Well my Mom tossed them and I hope she doesn't quit her day job.) I asked questions like...

- What does the heart do?
- What can you do that's good for your heart?
- What kind of exercise is good for your heart?
- What food should you eat?
- What happens to someone when they have heart disease?

There really weren't any wrong answers. All the students participated from kindergarten all the way to grade 8. I was impressed with their knowledge.

Probably the most entertaining part was when I told them what it was like for me living with heart disease. I told them that I take lots of pills, I need lots of needles, I stay in the hospital alot, I have to see my doctor all the time, it is always difficult to breathe, I am always tired, I can't play sports and the best one... I can't go on rollercoasters. The crowd roared in disappointment. It was actually really funny. They are more concerned about roller coasters than they are about needles and hospitals.

After talking about heart disease I touched on my mechanical heart and organ donation. I was a little worried about how to present this discussion to the young kids. I tried to be very matter-of-fact and just tell it like it is. I think some of them were aware on my situation all ready because my Mom teaches at the school and they wonder why she was away for so long in the past. I told them that I need a new heart because mine doesn't work very well anymore. I told them that when someone dies they can donate their organs to other people so they can live. Plain and simple. Of course, I told them that one person that dies can save eight people!!

I gave them homework. This created some more uproar. Funny. I told them to go home and talk to their families and friends about this nice lady they met that is waiting for a new heart. Hopefully the next generation can bring a major change.

The most important things I wanted to stress are:


Eat properly.

Never, ever, never, never, NEVER smoke. EVER.

Talk to your family and friends about organ donation.

I also told them how sincerely thankful I am that they are raising money for the Heart and Stroke Foundation because they are saving lives. They are saving me.

(I had them put their fists in the air because your heart is about the size of your fist.)

Sunday, April 25, 2010


Friday night was my final event for NOTDAW. I was so excited because Shaun and my parents were joining me for this one. It's called "Illumination of the Falls" and/or "Light-the-way".

The plans were:

- Trillium will host a booth near the falls for people to sign their consent for organ and tissue donation.

- There will be a talk by some significant people in Niagara Falls and Trillium Gift of Life.

- Green rain ponchos, glow-in-the-dark sticks and 'YES' cards were handed out.

- The horseshoe falls was illuminated in green for organ and tissue donation.

- We walked together across the Rainbow Bridge to meet with our American counterparts.

In the short time I have been involved with Trillium there were some people I already knew, which was really nice. I met some of those directly involved in the transplant process and also people that have had a transplant as well as the families of both donors and recipients. It's nice to know that I'm not the only person with such issues.

I have learned that I'm one of very few that would be able to attend such an event while waiting for a transplant. People are more than happy to see how well I'm doing and the LVAD.

We had a hard time locating the event.... which was very frustrating because I was so excited about this event.... but eventually we found everything, barely in time for the walk across the bridge. Funny how the locals couldn't find their way.....

Dress Rehearsal

So I was sleeping soundly after a big night at my parent's house in Niagara Falls. It was only the second night in 6 months that we were away from home. I was dreaming that I was with nurses I knew from volunteering earlier this week and they were getting a call with a ring I didn't recognize. I woke myself up and started thinking what it could be. Then it hit me.

I called the number left on my pager and it was for another pager. Seriously. They called back right away, but it felt like the longest 30 seconds ever. The lady was very friendly and calm and told me that they think they have a heart for me. She gave me instructions of where to go and what to expect. She told me to take my morning pills with a glass of water because sometimes "things happen" and it might not be right for me.

Shaun packed up and my parents made plans for the dogs. I remembered to brush my teeth but forgot to pee... Everything got jumbled up. When we got on the road I started making more phone calls. This was 6:30am by now and I was waking everyone up. I'm sure they didn't mind.

We had a few tears and felt the reality of the situation.

We got to the hospital and went to emergency because admitting wasn't open yet. They sent us right up to the CCU. I spent about a week in this unit before I had my LVAD implanted. This was by far the worst week of my life. The nurses and staff here were happy to see me and I recognized many of them. It was nice to see familiar faces. They were all so good to me.

Not long after we got there the surgeon came in to see us. It was Dr. Cuisimano who had done my LVAD surgery. I have met all three surgeons and feel in more than confident in them, but it was nice to see Dr. Cuisimano since he did my other surgery. He told me that they might remove Ivan (my ICD), since patients typically don't need them after having a transplant and the wait list to get it removed otherwise is about 2 years long. Even though Ivan and I had been through a lot together, we were both okay to retire our relationship. Shaun and I were also briefly informed of the risks involved in the surgery, which we were partly aware of already. They mentioned that it wouldn't be unlikely for the surgery to run 6 or 8 hours long. I don't mind.... but that's a long time for the family. It's difficult to wait.

Dr. Cuisimano told us that he was going himself to see the donor heart because it was in town. He said we would know in a couple hours if it was good enough for me. He said, as we knew, it's hard to tell that the heart is in good condition until a surgeon has it in his hands to evaluate. You would think this would be a long couple hours, and we did keep checking the clock but there was a lot going on, for me anyway. They took about 15 vials of blood and did swabs. I had to get a "swan" put in. It has many different names, which I believe could be a right-heart cath or a pick line. Basically, they insert a catheter in my neck vein that goes all the way into my heart. I had this before but I was feeling much worse. I didn't remember it being so uncomfortable. With a cover over my whole body, they froze a part of my neck, made an incision, inserted the catheter and put a stitch to hold it in. I tried to suck it up and let them do their thing.

Time passed and we had some nice family time. My parents and Shaun's parents were there. I don't know what I would do without my support network. Thanks to all of you. It was so nice to have you there. We all didn't know what to prepare for.

It was about 11:30am when Dr. Yao, one of the surgeons came in to tell us that the heart was not good enough. They want the best heart to give me the best chance. They found some sign of coronary artery disease, or something like that, in the donor heart. I could tell that this is news the doctors do not want to share, but it happens. While it was disappointing, I didn't feel too bummed because I know that it's in my best interest.

Just a dress rehearsal.

I would like to take a moment for the donor and the donor family.

Because this kind, generous and caring person checked the box, people could live. Even though the heart wasn't able to pass on, I'm sure other people were saved. I want to send up a prayer and big thank you to that person. Your legacy will live on.

Thanks to Shannon, who did a great job keeping everyone updated. It's hard to sit and wait, but I'm sure two pots of coffee helped.... LOL

Saturday, April 24, 2010

Just Wasn't Meant To Be

So I just got word that the heart was not good for Andrea. This is very disappointing however we want Andrea to get the PERFECT heart!!!! This just wasn't meant to be today. Hopefully she will get her chance again soon!!!

Update Number One

Just talked to Shaun and he said that they have talked to the doctor and he was going to go and check out the heart now. We should know by 10:30am if this is THE heart. We sure hope it is!!!!


Andrea received her call early this morning that a heart is available for her! She was on her way to Toronto with my brother when she called here at 6:30am. Please pray for her today. Pray for Shaun. Pray for her parents and family. Pray for my parents and family. Pray for the family of the donor as for Andrea to get life, someone lost life. Pray for all of those involved.

I will update here as I can and as soon as I know if this is a GO!!!!!!

We all love you Andrea & Shaun!!!!

Thursday, April 22, 2010

My six month anniversary.

Six months ago today I was put on the heart transplant list.
I'm not sure if I should be celebrating.

I like that it has fallen on NOTDAW. That's a great way to celebrate.

Today I went back to St. Mary's hospital to volunteer at the Organ and Tissue Donation booth. It was a very busy day. I had many interested people come over to have a chat. I ran in to more nurses, doctors and staff that I haven't seen since I stayed there six months ago. It's so nice to see everyone when the situations are much better. I also did a brief interview with the local newspaper. I'm not sure when the story will be put out but I will certainly post it when it's available.

Some people may say it's mean, but I like to see the reaction from them when I tell them I'm waiting on the heart transplant list. They often don't believe me. So it's even more fun when I tell them that I'm supported by the artificial heart. That's when people pick up more papers or just sign their consent right there. That doesn't qualify as some kind of duress, does it? LOL! I'm sure it doesn't. It's really nice for people to put a face to their cause. Most often it is expected that elderly people are on the list, not someone like me.

Here's a couple pictures of my booth. I wore a heart tag that told people I'm waiting for a heart and I wore a t-shirt that says "Be someone's miracle. Be an organ donor." I had a great day and again, learned so much.

Tuesday, April 20, 2010

This week is National Organ and Tissue Donation Awareness Week (NOTDAW). There are events going on around the province. The intention for this week to get the message out and encourage people to sign up for their consent to donate.

I volunteered today with Trillium Gift of Life at St. Mary's hospital in Kitchener. We had a booth set up with forms to fill out with postage paid. If someone didn't want to sign up right there we gave them a package with the form and information about organ and tissue donation. It's a great thing to do and I learn so much by getting involved.

Something of interest... You are more likely to need an organ than you are to donate an organ.

Unfortunately, there are families out there that will certainly take an organ to live but will not sign their consent or choose to donate a family member's organs. It's a shame. These people are incredibly selfish. There are countries that take into account if a person is an organ donor when they need an organ. In other words, when the list is created for those waiting for an organ, the people that are organ donors go higher on the list than those that are not organ donors. I think this is great! I think the list should also consider those who have chosen to destroy their organs when there is information to inform them of the risk. But that's a whole other conversation.

I would like to list a few things I learned today. I hope there is at least one person out there that will read this and understand the honour in being an organ donor.

No one would want my organs. Well. What I've learned, there are only three definitive illnesses that can guarantee you cannot donate. These are cancer, HIV and hepatitis. I'm not sure what types of these illness are considered, but why not sign the consent and let the professionals decide?

I'm too old to donate. The oldest donor we know of was 90 years old. You read that right. She was able to donate her liver and it was a successful transplant. Enough said.

I have put my wishes in my will. If you aren't actually deceased yet, no one will read your will. This is a good start but unfortunately, it is not enough. If you register your consent with OHIP your wishes will be available to Trillium and they will share it with your family as soon as the time is right. No fuss.

Whatever your concern is, please educate yourself. There are many misconceptions out there that are simply not true. Make the decision that can directly save lives.

Monday, April 19, 2010

Me, Shannon, The Sister In Law

So I thought I would introduce myself here on the blog. My name is Shannon and I am the one who came up with the idea to start this blog for Andrea (my sister in law) a while ago. I think she is a brave, amazing woman and I know there are many in this world that would love to follow her story about waiting for a heart transplant. She is an inspiration to many and I thought this would be a way to share and as well a way for her to just vent her feelings in writing.

I remember the first night that I met Andrea. It was at the bar here in town. I had a mutual friend of ours come up to me and ask if I would introduce my brother to her friend, who happened to be Andrea. I said sure, why not. (Andrea had been checking out my brother all night!)

Shaun and I have always been close. Had a great relationship that I can say goes past the whole brother/sister thing. We are really truly friends. Now to be honest here, I can't say that Andrea and I had the "closest" relationship during her first couple of years with Shaun. Sure we got along and things but that was about as far as it really went. We didn't have that connection I guess you could say. Which is fine, it doesn't always work that you do but I really wanted that, especially if she was going to spend the rest of her life with my brother.

I am happy to say that now we are very close and I think we have come to a better understanding with each other because of the way life has turned. We just had such different ways of life that it was hard for both of us to really see the other side. Shaun and Andrea had both just graduated school and bought a nice house. They didn't have children. Myself on the other hand deals with a child that has many health issues in life. Issues that are sometimes very difficult to understand. Dealings with doctors/hospitals that are difficult for some to understand. I can even say "hard to believe."

I remember getting a phone call back in I believe March 2008. Shaun had said that Andrea was taken to a hospital in Toronto. She had been driving home and had some numbness is her arm and felt "funny." I of course made sure he would call me when he knew anything more.

He did call. He told me they were waiting for a CT scan. A CT scan I asked? Why a CT? Tell them they need to do an echo. "Echo?" I of course forget sometimes that the knowledge I have gained with having a medically complex child is more that most know of. He wasn't sure what an echo was.

I was baffled.

She goes in with numbness in her arm and feeling funny and they want to do a CT?

Anyhow I don't really remember what became of all that, but not the diagnosis she would soon learn of.

THAT is a phone call from Shaun I will never forget. He called and told me that they finally found out something about Andrea. What is that I had asked?

My heart sank.
Cardiomyopathy?! Yes he said. I couldn't believe it. I was scared for them. I have known families in the hospital with their children that had cardiomyopathy. It isn't good. Of course Shaun just had NO idea what this all meant. I had to keep reminding myself that they were just learning.I remember getting off of the phone with him and calling a good friend. I was shaking as I stood on the balcony and explained what I knew.

Life continued and it was at the point where Andrea could no longer work. She couldn't do anything. Even walking ten feet was a great deal of effort at times. She was so weak and looked SO sick. My stag and doe was June 2008 and she was not even able to attend the entire event, but did stop in for a while. In a wheelchair.

In October 2008 Andrea had her ICD placed. She named it IVAN. There were days that she came here so that she would not be alone. It broke my heart to watch her suffering with no one truly helping her in ways that she needed to be helped. Unfortunately with my experience in hospitals and doctors I KNOW that you don't always get the help that you desperately need and deserve.

May 30th 2009 Andrea and my brother Shaun had their wedding. It was a gorgeous day and I was proud to be standing as The Best Woman. I have to admit that I was very nervous about Andrea doing a speech for her wedding. Little did I know that fear would become a reality. Just as she started into her speech about me, the big sister who is always watching, always listening, her defib fired. Shaun caught her as she fell backwards to the ground. Her defib then fired two more times. I have goosebumps writing this. It was a very scary time. I cried because I had just gotten married the summer before and I was so angry that this had to happen on their wedding day of all days. It just wasn't fair.

It has been a picture in my mind that has haunted me. I of course was looking right at Andrea as she was talking about me. For weeks afterwards I would just replay the sight in my mind over and over and over. And to this very day it is something that gets me very emotional to think of.

My little man with his Uncle Shaun and Auntie A

Turns out it was probably a blessing in disguise. Andrea had been dealing with doctors at an area hospital near her home, however with the reception being in another city, she was taken by ambulance to the hospital that later saved her life.

July 2009 we had an "Aftershock Party" to finish the wedding that they never got to finish. Lucky girl got to wear her wedding dress a second time! (So jealous!!) Anyhow that went off without a hitch and Andrea had videotaped her speeches this time. Smart girl!

The beautiful couple

Andrea with her daddy (I took this great picture!)

Throughout the summer she seemed to yet again be going downhill. She was in a great amount of pain (abdominal) and had trouble with eating. Doctor after doctor told her it was a GI issue and had nothing to do with her heart. I remember speaking with Andrea a couple of times and she felt that it WAS her heart. I told her, your gut feelings are usually right. (Again something I could totally relate to as I have spent years fighting with teams of doctors about my son.) NOTHING can get rid of "feelings." No matter what ANY doctor tells you. Doctors do not know everything. And they are not always right. Sadly I think Shaun and Andrea were beginning to see that you cannot always trust a doctor because of their "status".

This can sure be a scary world that we live in.

A couple of times there was even talk of removing her gallbladder as this was the cause of the pain in their minds.

I believe it was in September 2009 that Andrea and I went to St. Jacobs to a scrapbooking store. From the parking spot to the door was a lot of effort for her to get to. I knew then that this just wasn't right. We continued inside and this is where she had to sit at a table and take a "rest". Now it isn't rocket science, but would you think that a 26 year old who cannot even walk 100 feet without being in pain and out of breath is normal? I don't think so.

I remember talking to my husband that night about the day. It was so frustrating that doctors would see her and say she looked too "healthy." Anyone who knew her personally knew that this was NOT the case. She looked horrible. (Sorry Andrea!)

For three months she complained to her cardiologist about these troubling symptoms. It scares me to know that he didn't realize she was in SEVERE HEART FAILURE.

Yes you read that right.

For months Andrea suffered needlessly and her concerns fell on deaf ears.

Scary right?

It was a nurse at a clinic that KNEW her symptoms were not good. She was taken to the hospital where she had gone after her wedding and it was there that they determined that her abdominal pain and other symptoms for the entire summer were because she was in severe heart failure.

It was determined that she needed to be transferred to Toronto General at this point. I was with her as they wheeled her out to the ambulance that would be taking her to a hospital that would figure out what would need to be done. Everyone else had already left to get ahead of the ambulance. I think it was the first time I cried in front of her about her illness. I told her I loved her as they took her into the ambulance. I watched it drive away. Tears fell down my cheeks. I had to sit there for a good twenty minutes before I could even drive home. I was shaking.

It is funny how times like these you realize how much people really mean to you. It was the first time I had told Andrea that I loved her. People need to tell the ones they love that they are loved every single chance they have as you never know what could happen.

It was Toronto General that determined that yes she needed a heart transplant.

October 24th I drove to Toronto to see Andrea. I had gotten the call from Shaun the night before (I think it was the night before anyways...it all kinda mixes together) that Andrea had a code blue. I needed to see her.

I was not expecting what I saw. In just the five/six days since I had seen her off from Kitchener she was HORRIBLE. She was hooked up to about twenty different meds. She could barely move, let alone talk. It was very scary. I came home that night and had told Jeff (my husband) that he needed to go down. That there was no way that Andrea was going to survive.

October 25th it was decided that she needed to have an LVAD placed to keep her alive. They had wanted to wait for a heart but none had come and they couldn't leave her any longer. Her life was being counted in hours.

The LVAD surgery went well.
I tried to be there when I could to support Shaun. I know firsthand how hard it is to sit in a hospital all by yourself. We had great talks. He told me that he felt guilty for the times that he didn't come and visit me while I was sitting in hospital with Ashton. I get it. You have NO idea what it is like until you are in that situation. No need to feel guilty. It was great though to spend time with him and just talk openly about feelings and thoughts.

Andrea had not wanted anyone to come and visit (after the LVAD) that was going to be crying and emotional. I laughed when Shaun said that because I am the MOST emotional person and there is NO WAY that I would go in to see her and not cry. So sorry Andrea, you just have to deal with one person crying! :)

Since that surgery Andrea has done nothing but improve. She looks amazing and can do things that she has not been able to do in a long time!!!

Today marks day 179 of waiting for her perfect heart to come.

And just a little piece of information for all you readers. Andrea thinks it is crazy that I am emotional about what she goes through. She just has NO idea how amazing she is. How strong she is. How there are MANY people in this world that would not deal with what she is going through the same way. Everyday I am amazed when I think of her and her attitude.

Now to Andrea. I am so happy that we are as close as we are now. I am blessed to have you as my sister in law. My brother is a lucky man. You are so incredibly strong, beautiful, loving and amazing that I know the future can only be bright. I pray you get that call soon for your heart. Your PERFECT heart. God knows how much you deserve this after how strong you have been.

Andrea and Shaun are an incredible couple. They have crossed roads that some of us will never even experience. Throughout it all they have shown all of us what real love is. What dedication is. The importance of living life each day when you don't know what is in store.

I love you both of you guys. With all of my heart. I hope that I get to watch your love and dedication grow for many, many more years to come.

I look forward to being able to update the world here on this blog when you get your call and as you push through your transplant and recovery!!!! I am in YOUR corner cheering you on daily!

Friday, April 16, 2010

You Make the World a Better Place

I have been connected with a school/daycare in Ottawa through a family friend, Lisa. She found me in the media and knew of my challenges. She has very kindly decided to open the discussion of transplants and organ donation with her students. They have decided to follow my story, which makes me feel all mushy inside.

Lisa's students made cards and crafts for me. They are so wonderful and really did make me feel better. I also feel so special that they would think of me and put their time and efforts into their work.

Since I was so happy with their gifts I decided to send a thank-you gift back. I sent a great big card and little paper hearts on a ribbon for each student. They can do whatever they choose with it and when they look at it they will remember my story and the importance of organ donation.

I strongly commend Lisa for talking about this with her students. We all know that major changes come in the next generation. These kids will learn that talking about it is not such a big deal and how they can make a difference. Just going home and talking to their families can save lives. So thank you so much to Lisa and her students for their support.

It is in the smallest ways we make the biggest difference.

Tuesday, April 13, 2010

Isn't She Lovely?

So I was in the office at St. Mary's cardiac rehab the other day and I saw the most amazing thing. I had to find one for myself. This is a Healing Hearts Barbie put out by Mattel specifically for St. Mary's Regional Cardiac Care Centre. Do you believe it? She's wearing a beautiful red dress to represent the heart.
"Mattel Canada Inc will make a one time monetary donation to the Regional Cardiac Care Centre at St. Mary's General Hospital, Kitchener, Ontario to support the fight against Heart Disease in Women."
I was a HUGE barbie fan when I was young and so my obsession continues. Isn't she lovely?

Sunday, April 11, 2010

Meep Meep!

I got a new bike today!!

Now I'm sure most of you are wondering, how does one ride a bike with the artificial heart?

Good question.

Well, I have been going to cardiac rehabilitation for a few months now, I have improved significantly and I want to! I have my backpack with my controller, batteries, pager and cell phone. And I have my spare parts in a pouch attached to my bike seat. I have it all set up.

I would like to send a big BIG thank you to my parents. I would not be riding or pushing myself this way without their love and support.

I decided on a Rocky Mountain Fusion. Designed and tested in Canada. I like to call it Mango in colour with lots of other designs and colours. It's got great components and hydraulic disk brakes. I had narrowed down my decision to a different Rocky Mountain and I was convinced into trying this one.... well it certainly hit my sweet spot.... It just felt so good! Even the pedals and the way the chain sounded. I was sold within minutes.

My Dad is an avid bike rider and he has a Rocky Mountain as well. I'm proud to match! His bike is named Rocky. So mine is rightfully named Rockette. Here she is.

I went on my first bike ride since before May 2008 with the whole family! It was great! I certainly felt that I was working, but I didn't feel like I was doing something I shouldn't have done. Progress!

Wednesday, April 7, 2010

Kitchener Appointment

I had a regular follow-up appointment today in Kitchener. They are my local resource and one team that was part of saving my life. I always enjoy going to see them. They are very good to me and we have a lot of fun.

I have been having problems with shortness of breath since about January. The docs recently did a chest x-ray, echo and a breathing test. Chest x-ray and echo were good but the breathing test showed a slight thickening of the diffusion membrane of the lungs.... I hope I got that right.... The point is, that would explain the shortness of breath. It could be caused by one, or both, of two things. One. I have been on amiodarone for a while now and while it's a great drug, I'm told the only one right now, to handle arrythmias, it has many nasty side-affects.

I was very reluctant to go on it but the choice was either arrythmia or no arrythmia..... It's not a good feeling for those of you that haven't felt it. The most concerning part about having arrythmia was that with an LVAD I wouldn't feel how fast my heart was going and Ivan (my ICD) could fire when I wouldn't actually feel all that bad. So I chose no arrythmia.
The amiodarone could potentially contribute to the thickening of the membrane wall of my lungs. Although, I haven't been on it all that long, it was still a concern.

The second option that could cause the thickening is simple. Just plain old right-sided heart failure. My left side is fully supported with the LVAD but the right side is just working less. I still need that side. So the shortness of breath and thickening could be just the way it is right now.
My amiodarone was reduced by half and I'm not experiencing any arrythmias, good thing. If the thickening is from the drug, it will most likely clear after I'm off the drug. If it's just heart failure than my assumption would be that it would clear after I get my new heart.
That's what I know.

Everything else seems good. The doc was happy with my improvement in cardiac rehabilitation. I did a 6 minute walking test when I started and did 392 metres. A month later I walked about 480 metres in 6 minutes! That's a great improvement! My muscle test also showed improvement over the same time frame. I'm really happy with that.
There weren't any major concerns and I will just continue on as is.