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

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!


  1. You're an inspiring pair of women, thank you for sharing of yourselves. the world needs to have more opportunity to bear witness to such truth, honesty in suffering, and grace in the face of the unknowable. Cheers. Good luck to you all, Andrea, Shannon, and families.

  2. Shannon you are a wonderful writer and a true friend/sister-in-law to Andrea! We feel blessed that she joined the Cleggs (even if her other name did sound more interesting LOL) as all of you have been awesome supporters and always there for her and Shaun! We thank you for that!
    I am glad you will write when Andrea has her surgery as you are very positive and inspiring as well!