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 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

Two steps forward, one step back....

Yesterday my Mom and I went to Toronto General for my first out-patient biopsy. It's not the most fun thing to do but everything went well. I got to see the six tiny little samples of my heart they send to the lab for rejection testing. I also did a bunch of bloodwork, of course, and saw one of the best doctors EVER, Dr. Ross. It was really nice to see her and feel her energy. She and the other doctors are very happy with my progress and were happy to hear from Dr. Rao (my heart transplant surgeon) that the surgery went very well. All in all, everyone was happy.

The transplant team always has their meetings on Friday mornings to discuss any med changes or anything required to control rejection and infection for each patient. I got a call today from my wonderful post-tranplant nurse and she told me that they found Class 3A rejection. I'm not sure of the specific terms but I was told to go straight to my local hospital to get IV Prednisone, also called Solu Medrol. I need this drug administered today, tomorrow and Sunday. At first I was taken back because I really didn't want to go back to the hospital but it's just another part of the journey. Everyone experiences some form of rejection and this is expected in my case. When I got the news about going to the hospital I was unsure if we would have to stay for the three days or if I could come home in between. Thank goodness I was told I could just come home in between doses. Each dose only takes about an hour.

My nurse told me that I have an over-active immune system for two reasons. One because I am young and two because I had the LVAD, which really allerted my immune system. In normal people an active immune system is a good thing, in a transplant situation, it's working against me. When I think back to my normal life before heart disease, I never really got sick. Everyone gets the common cold and chicken pox but I never remember having anything serious. I guess that's a sign that I have a good immune system.

What does rejection feel like? I don't feel a thing. That's the purpose of the weekly biopsies, so that I don't get to a point that I would notice rejection. If it gets to that point, it would probably become concerning. I have to be very aware of infection such as a cold, the flu, PCP, CMV, etc. But rejection is a different situation. I have actually been feeling really great! It's hard to believe that 17 days ago I had my heart taken right out of my chest and got a brand spankin' new ticker. I still have tingling in my legs and my right pinky finger isn't quite back to normal but everything is getting better. The hardest part is forcing myself to rest! Errr.

Noone likes to be in the hospital but it was nice to see my good friends at St. Mary's hospital in Kitchener. All the nurses were happy to hear about my transplant and very supportive. I was also lucky enough to see Dr. Smith. He actually rescued us from emerg and took us upstairs to get my Solu Medrol. Noone should be in emerg, especially someone that is immunosuppressed. It was also nice to see the Nurse Practitioner on the 3rd floor. She and Dr. Smith are the reason I got to the right place at the right time when I got the LVAD. They recognized that I desperately needed the Toronto General Hospital team and they sent me there when I really needed to go. I really respect when professionals recognize that a situation is beyond the abilities of their facility. It's an important lesson I learned in the past.

So for now I'm just going to keep doing what I'm doing. I've gone for groceries, keeping my distance from everyone, of course, and tried to do some other little errands and household chores. Hopefully soon I will start doing little exercises on the Wii. It really helped me get strength back after I got the LVAD. Ain't nothin' gonna stop me now!!

Toronto Appointment

I had a regular appointment at Toronto General Hospital today. They did an echo, took bloodwork, read Vito (my LVAD) and did the normal heart stuff.
Since there are 15 patients with LVADs out of TGH now, they have a regular clinic just for LVADs. The system now includes a visit with the VAD nurse, the cardiologist and the cardiac surgeon. I think it's great because I enjoy all of their company!
It was a nice appointment for many reasons.
Firstly, there are no concerns. The only issue I questioned them about was that Vito has made a few unusual sounds lately. Twice now he beeped randomly and by the time I could get him out to check the controller, he stopped. It didn't quite sound like a battery alarm. I couldn't figure it out. The nurse read the controller and didn't find anything to be concerned about. So I keep myself prepared for changing the controller if the need arises.
Secondly, a traveled to TGH with my good friend and pump-pal from Cambridge and her great husband. I really enjoyed the time we spent together.
Third, I got to see more LVAD patients. One in particular was implanted only a couple months ago and I would not have guessed. She looked great!
And last, but not least, I got to see many people on the LVAD and transplant team. I very much enjoy seeing them, especially when I do not have any concerns and we can have normal conversations.
Big thanks to the hardworking teams at the Peter Munk Cardiac Centre. You are all a huge part of saving lives and making a difference.

"You are at the top of the list."

Yesterday we had a scheduled appointment at Toronto General Hospital. They do blood work, read Vito (my LVAD), do a physical exam and have a little chat. I just love my transplant/LVAD team. I couldn't ask for better, smarter people. Everything is good. No concerns.

They tell me that I'm at the top of the list. And I have been for quite some time now. I would think since my false alarm in April, maybe before that. Doc also told me that there has been some potential donors for me but they just don't work out. They do several tests and assessments before I even get a call. I think my worst enemy right now is my size.

I also had the pleasure of meeting another VAD patient. She was implanted 6 weeks ago and she looked fabulous! I remember my six week marker. I was not feeling so good and I couldn't straighten my back. I walked like a hunch back for quite a while. It was so wonderful to meet this lady and I wish her the best.

I learned that there are 16 patients with a VAD out of TGH! That's at least double last years volume. TGH will have a clinic day just for VAD patients now. I think it will be a great opportunity to meet with my pump-pals.

TGH is putting in three different types of LVADs now. One being my Heartmate 2, another the Duraheart and lastly HeartWare. Here are a few helpful pics.

Heartmate 2:

Duraheart:

Heartware:

My pump-pal Josh From the Bottom of my LVAD found this interesting picture from this site with the different devices. It illustrates the growth of the LVAD. Notice the difference in weight as the VADs progress. Our next major change will be when the VAD is designed to have no exterior power source. Wouldn't that be great?

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