Have I got some pics for you!!

Since I'm so famous and there were reporters in the OR we were able to get some great shots of my old, sick heart beside my new heart. The lady taking the pictures said it was difficult to get the surgeons out of the way. I guess I'm ok with that... the surgeons are a little important.

You can see my old heart with the LVAD still on it and the new, fresh looking heart in front. It's pretty unbelievable to see these shots.

Merry Christmas!

I hope that everyone had a very good Christmas today! I know that I did! I got to spend the morning with my boys, baked a pumpkin pie and a lemon poppyseed loaf. We then packed up and headed down to Toronto to be with Andrea, Shaun, my parents, my sister and Andrea's mom and dad.

How is Andrea?

Well to start, she was moved out of the ICU and into step down! This happened yesterday later on in the afternoon. Hard to believe that less than 72 hours after receiving a new heart, she was already being moved out of the ICU eh?

She is without any IVs and the line that was in her neck is also gone!

She is still having issues with her right arm/hand and her legs being "tingly". Neurology did see her two days ago and she was sent down yesterday afternoon to have an MRI done. No word yet on if they saw anything or any idea on what exactly is going on with her. Again, we just hope that it is either to do with the medications she was on, the way she way laying for so long or even just a pinched nerve.

She is also very very tired, but I am sure that anyone would be given what she just went through! Pain is also an issue, but again, who the heck wouldn't be in pain after what she just went through?! She said to me tonight after I told her she looked good that "the doctors keep telling me I am doing well, but I don't feel very well." BUT being only 96 hours out, again, expected.

I did some work on the keepsake book that I wanted to give to her today and although I didn't "finish" it, I did take it with us today to give to her. I felt that today being Christmas was a good time to do so :) I had taken it in with me initially when I first got there and went in to see her, but every time I even thought of giving it to her, I would feel the tears coming. So I ended up walking out of her room with it still in my arms. However, after we all ate dinner and she was on her way out I gave it to her then. And I am proud to say that I did very well! Yep, Ms Emotional didn't break down! And by the way, you can still send a message for Andrea as this will be a work in progress for a while, I am sure!

I felt really special tonight because I got a text from Andrea telling me that it was her second text since her new heart and that I got her crying. Its kind of a joke between us, because she is always making fun of me and how emotional I am. My tears always fall easy! I felt so special because I was also her FIRST text :)

Here are some pictures from our MOST AMAZING Christmas!!! It still doesn't feel real at times that Andrea has her brand new heart! I found myself sitting there a couple times tonight just looking at her and thinking just how freaking incredible it is that the heart in her chest beating came from someone, somewhere that we do not know. I know I have already said this, but MAN, I can't even tell you how amazing it is!!!!

"Just follow your heart and you'll never get lost"

Funny how some things turn out too. I had bought the above plaque for Andrea about six weeks ago. Perfect? I say so. 

I know that this Christmas is probably a horrible time for the family and friends of the donor who gave the gift of life to Andrea. I can't even imagine the sorrow that they are feeling and then being so close to a holiday....I am sure it is just THAT much worse. I often wonder if they are curious about the heart and where it went. If they know just how much it means to us. If they realize that they have done the most amazing, incredible thing that could EVER be done. So many questions. I hope that they have some peace and comfort in knowing that other people have been given a second chance. My thoughts and prayers are with the donor family every day now, and especially tonight.

xxxooo

Two Days Later

Well I travelled down to Toronto to see my amazing sister in law today and she looked INCREDIBLE!!! She was sitting up in a chair and had the most amazing colour to her face that I have seen in a long time. You can even see her rosy cheeks in the picture! :) It is hard to believe that this girl just had a brand new heart placed in her chest less than 48 hours prior!!!!!

And of course my smiling little man in the waiting room....he isn't able to go in to see his Aunty A while she is in the ICU.

She is having some pain in her right arm and hand but the doctors figure it is from either the way she was positioned for the long hours (during surgery), or perhaps one of her many many needles hit a nerve. As well both legs don't have much feeling and are "tingly" so they are keeping an eye. Neurology was in tonight to see her but no word on their thoughts or the tests they want to run.

I wasn't able to spend a lot of time with her today as she had already been sitting for quite a while and she needed to rest before physio was to come at 3pm. I am proud to say that she did do SOME walking later on this afternoon!!! She amazes me every minute that I think of her. And I am just SO SO SO proud to call her my sister!

The doctors are just amazed at how well she is doing and so are all of us!!!!!!!!!!!!

One other thing....I am asking people to leave a little "note" on their thoughts/feelings/good wishes for Andrea. I am going to make up a little book for her and I am hoping to give that to her on Christmas Day. I think she would LOVE to see how many people are thinking of her. Well I don't think, I know. Aren't I just one kick ass sister in law?! hahaha

So keep those prayers a coming...they have definitely worked thus far!

The Day After...

"Hi. I'm Andrea's Mom. It is the day after, and her heart is beating beautifully. Her blood pressure is perfect, her oxygen is perfect, her heart rate is perfect!! Yes, a rough road for a few days, but doctors are VERY pleased with her progress, and we are SO thankful for their work and expertise. I want to say a very special thank you to the donor's family and loved ones for the generous gift of life. I often cry for that family, and I feel their grief, but their choice to give Andrea a chance to live a full life is appreciated, aplauded, and hopefully will give them some comfort in their loss! Bless you!! I wish we could meet in the future, but for now I send out a huge hug to you all! Thank you! Thank you!! "

Shannon:  Andrea as you can see is doing well today! I heard from my brother that they are hoping to have her sit up on her own later on this afternoon!!! Incredible isn't it?

This is a picture I took last night when we were able to go in to see her. It was just so incredible to stand at her side watching her chest rise and fall and know that it was a new heart doing this! And then to watch the monitor knowing it is all the works of such a wonderful donor. Words cannot even describe how it felt.

I also wanted to post the next picture. On our way home last night I stopped to grab the mail. In it was a Christmas card from Shaun and Andrea. They are handmade of course but the card gave me chills when I opened it. It couldn't be more true could it?

Those who know me, know that I am the BIGGEST believer in things happening for a reason. I know that sometimes things that happen are horrible and so forth, but I still believe. And I think that sometimes we might not "understand" why things happen that do but I believe that ONE day we will know why. We will learn to understand.

I will leave you with a quote that an online friend said, quoted by Catbert: "It only looks like a coincidence."

Walk in someone else's shoes.

There is a new TV show on that started about 5 weeks ago. Those of you that like medical drama and even those that just like to see what it's like to walk in someone else's shoes, this is the show for you. Boston Med. Thursday nights at 10pm. You can check out their website here.

There have been events such as a police officer shot in the face, two lung transplants, removal of a brain tumor, babies with heart defects, a twelve-year-old hit by a car, an eight-year-old with cardiac complications, several heart problems and none-other-than, heart transplants.

Last week there was a young girl, even younger than me, that underwent a heart transplant surgery. It was incredible to watch. You can watch this episode here.

And just last night there was a man brought in with serious cardiac complications. While the cameras were filming, the doctor went through the process of approving him for a heart transplant. This was a crazy thing to watch. I will tell you that not all stories have a happy ending. It's a reality check. You can watch this episode here.

Don't forget to put a box of kleenex close to you before you start watching.

200 Days!

Today marks day 200 that Andrea has been on the list waiting for her heart transplant. Please, if you have not filled out your donor information DO THIS. You can save so many lives. All you have to do is click HERE, print the form, fill it out and mail it. Remember, signing your card in your wallet is NOT enough. Most importantly make sure that you talk to your family about your wishes to be an organ donor if you were to pass away.

Every single day we hope that Andrea will get THE call for her perfect heart. She continues to amaze me with her attitude and love of life. If everyone had a little piece of what she has this world would be a much better place!

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

SHE IS ON HER WAY!!!!

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!!!!

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?

Cardiomyopathy.

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!

Toronto Star

Yet again Andrea is in the newspaper. Ahhh the life of the famous! You can read the story HERE AT THE TORONTO STAR.