A Women's Day

I had the honour of speaking at this event, A Women's Day, for the Federated Women's Institute of Ontario. A wonderful event attended by about 200 women from across the Region. I was invited by Judy and Moira, two nurses working for Trillium Gift of Life Network.

I felt a sense of belonging to this group because I am a woman in male dominated field, continuously working towards equality. As an engineer, women are still a minority. My civil class in university was about 1 woman to 4 men, which is actually high for most engineering classes. Mechanical Engineering, for example, was closer to 1 woman to 20 men.

Judy and Moira kicked-off the event with details of organ and tissue donation. They shared the details with great compassion and clarity for the cause. Thank you ladies for sharing your knowledge and for what you do.

Joining me to speak about our experiences was Cecily and Pam. Cecily shared her story about Kyla, her daughter that passed away at 16 years old. Kyla was a beautiful young woman and passed long before her time. Cecily and her family decided to donate Kyla's tissue and her gifts touched many lives. It was an emotional story that had everyone in the room reaching for their tissue. I was so glad to hear her story and share my appreciation for Kylas gifts.

Pam is my good friend and pump-pal. She shared her story about living on the LVAD and what's it like to wait for an organ. Both ladies did a wonderful job.

Also, joining me for this event was my wonderful supporter, my Mom-in-law, Dianne. She has been there for me through the whole journey. She has held my hand through the bad times and cheered with me for the great times. Thank you Mom for always being there for me.

Moira, Judy, Pam, Cecily, Me and Dianne

No Rejection!!

Whoop!! Yay!! Yippee skippee!!! Grade ZERO rejection!


Out of 8 biopsies, this is my second grade zero. Finally. The docs just lowered my tacrolimus from 4+3 mg/day to 3+3mg/day. I hope this will help with the tremors.

Working Hard to Save Lives

Today was a special day for me. I had the opportunity to meet the people that work for Trillium Gift of Life Network. These individuals work very hard to save lives. There are the nurses that deal with the donor families in their time of grief, the call centre staff that converse with the doctors and medical professionals, those that work on the transplant side to ensure the recipient's needs are met, and the others that coordinate the paperwork and organization of the overall process.

How do you thank the people that work so hard to make transplants possible?

I feel a great deal of compassion for this group. It is difficult to express my gratitude.

I was invited to this event by my good friend Judy, who is the donor coordinator for Waterloo/Wellington. We have worked closely over the past while to get the Life Donation Awareness Association off the ground. Judy has been a wealth of information. She has also given me a glimpse into her work, dealing with donor families. I have a great deal of respect for Judy and the other nurses working in that position especially. The emotional challenge they face to see many tragic events must be difficult. To thank them does not express what they deserve.

I was so lucky to meet the nurse, Katherine, that dealt with my donor family. Such a pleasure. Thank you Katherine. I felt a strong sense of closeness to Katherine and a sense of connection to my donor family through her. (insert tear)

I know what most of you are thinking, did I learn anything about my donor? It is the law in Canada that I am not allowed to learn details of my donor or donor family. I did not ask any questions. I feel that my donor family is entitled to their privacy and if I'm supposed to know something, I will find out. I sent the family a thank you letter and if they choose to respond, I would be especially happy to hear from them. However, if they choose not to respond, I respect and appreciate them just the same.

I was also lucky enough to go into the call centre tucked in the back of the Trillium offices. These are the individuals that deal with the medical professionals over the phone to ensure the donation/transplant process is carried out efficiently. Another very important part. I actually met the lady that dealt with my specific case. Another great pleasure.

Judy has shared with me that when a case is coordinated, the nurses on the donor side loose touch with the recipient part of the process. They typically don't get to know much about the recipients at all. Since I previously had a connection with Judy and I'm Miss December in the TGLN calendar, Judy and the other staff took advantage of this blog to follow my progress. That is such an honour for me and I owe appreciation to my sis-in-law, Shannon for keeping it updated.

I feel very honoured to give the TGLN staff a glimpse into a recipients life and success. I only wish that I have given them encouragement in their career and hope to share with the donor families.

What have I been up to lately?

Since I haven't posted anything in a while, I thought I would share what I have been up to lately.

I've been very busy getting the volunteer group going. The Life Donation Awareness Association is up to about 40 volunteers! The response and support has been amazing. I'm so lucky to meet all of these wonderful and encouraging people. Here's our logo!We have established a website. Thanks so much to Kelly Baker from Oak Tree Media.

We also have many events planned for NOTDAW, National Organ and Tissue Donation Awareness Week (April 17-24, 2011) including information booths at our local malls (Cambridge Centre, Fairview Mall and Stone Road in Guelph) as well as the local hospitals (St. Mary's, Grand River and Guelph General). We will be giving away Lifesavers to encourage people to our booths. The hospitals will have a challenge between them to see which one can register the most people. A little competition can go a long way.

I also have several speaking engagements coming up. I will be speaking at the Federation of Women's Institute of Ontario event this Saturday March 26th. I am honoured and excited to be a part of this event. Another event coming up is at St. Michael's Parish Centre in Waterloo. This event is open to the public and I will be speaking along with a wonderful donor Mom, another grateful recipient and the Vice President of Operations from Trillium Gift of Life Network. Please see Life Donation Awareness for more details. If you are in the area, this is a great event to learn more about organ and tissue donation as well as to get an insight into real lives touch by transplants.

The group has initiated many other awareness events, including corporation presentations, community service group presentations, parade involvement, support groups, training and involvement for local schools, and many other directions. Wow! We are doing quite a lot!

On another topic, I've been feeling great lately! My body is adjusting to the medications and I've been exercising. Cardiac rehab has been very useful. I go twice a week and have integrated weights into my routine. I have also registered for a weekly yoga class and a weekly zumba class! I'm so excited! It feels so good to get moving again. I can't wait to get on my bike!!

Shaun and I have been making plans for summer vacations. He's getting his boat all fixed up to visit our cottages. My niece and nephew are very excited to throw me in the water now that I can swim again. Uh oh.... what have I got myself into...

The ability to plan ahead is fully accredited to my donor and donor family. Without them, I would not be able to plan or have hope for the future. Without them, I wouldn't be here.

I BELIEVE

This video is very encouraging for me and send shivers through my body when I watch it. Follow the link here to view the video of a flash mob at the Eatons Centre in Toronto.

I Believe
by Yolanda Adams

They said you wouldn't make it so far uh uh
And ever since they said it, it's been hard
But never mind that night you had to cry
Cause you have never let it go inside
You worked really hard
And you know exactly what you want and need
So believe and you can never give up
You can reach your goals
Just talk to your soul and say…

(Chorus)
I believe I can
I believe I will
I believe I'll go on dreams that are real
I believe I'll stand
I believe I'll chant
I believe I'll grow real soon and
That is what I do believe

Your goals are just a thing in your soul uh uh
And you know that your moves will let them show
You keep creating pictures in your mind
So just believe they will come true in time
It will be fine
Leave all of your cares and stress behind
Just let it go
Let the music flow inside
Forget all your pain
And just start to believe

(Chorus)

Never mind what people say
Hold your head high and turn away
With all our hopes and dreams
I will believe
Even though it seems it's not for me
I won't give up I'll keep it up
Look into the sky
I will achieve all my needs
I will always believe….OoOo

CTV SouthWestern Ontario

Shaun and I were on CTV SWO yesterday. If you missed it, here's the link.

CTV

Oh, Sadie and Chili are famous too! (Our doggies.)

Biopsy #7

Last week was my biopsy #7. Pressure were great. The doc says my heart is ahead of schedule with regards to the pressures. Yay!

The bloodwork showed that my tacrolimus level is very high. They prefer it to be below 15, whatever that means, but mine was 23.5. And I did wait to take my tac until after the bloodwork. This would be the cause of my tremors. So the docs decided to lower my tac from 4mg in the morning and 4mg at night to 4mg in the morning and 3mg at night. It's a start.

The bloodwork also showed that my white blood cell count is low. I'm told this could be for two reasons: I could have an infection or I could be over-medicated. They don't see any signs of infection so that is unlikely. Since they expect I am over medicated they decided to have me hold one of meds. The options of meds to hold are a) anti-rejection meds, b) valcyte c) septra. Now let me explain as best I can a little about these meds. The anti-rejection meds are fairly self explanatory in this case and are not an option to be held right now since rejection is a concern. I have been prescribed Valcyte as a preventative to CMV, a viral infection. The reason I am taking this is because I am in a donor/recipient mismatch situation. I am CMV Negative, meaning I have never come in to contact with the CMV virus but my donor is CMV Positive. Back in the day, I would not have been given this heart because of the history of CMV in the donor, however with the use of Valcyte CMV is controlled. Long story short, since my transplant is quite recent, docs don't want to hold the Valcyte. Lastly, septra is another med to prevent infection, which is PCP, a lung infection. This is the med they chose to hold until further notice. Of course, I am always watching for any signs of infection and I do my best to keep a distance from anyone I know is sick or could pass something on. I have to make difficult and frustrating decisions quite often and where I can and cannot go but hopefully by the 6month or 1year mark after transplant I will have a cautious routine and understanding of my individual limitations.

The biopsy results showed 1A rejection. A part of me is disappointed because this means a stand-still again for another couple weeks but the other part of me is happy that is not higher rejection. I do understand that I am a case of concern for rejection and I will just roll with the punches.

GLOBAL 16x9: SATURDAY MARCH 5th AT 7pm and CTV SWO: MONDAY MARCH 7th AT 6pm

We have been informed that March 5th is the Global 16x9 air day. There is a "teaser" online here.

CTV Southwestern Ontario will have a segment on Monday on the local 6 o'clock news.

I will post links to the segments here if you miss them. They will be good!

Biopsy #6 and Global

GRADE ZERO REJECTION!!

My biopsy this past week showed no rejection. How exciting! The docs decided to lower my predisone by 5mg/day. One less pill. It's a great start!

The doc told me that I'm ahead of schedule with my pressures. I have "normal" pressures and, in fact, I should have more fluid and eat more salt! That gave me a good laugh. More salt?! They keep telling me that it's ok to have a slice of pizza or a cheeseburger once-in-a-while. It's difficult for me to get into my head. I still feel guilty eating high salt foods. Everything in moderation. That's a good rule.

I know many of you are asking about the Global 16x9 air date and I apologize for all of the changes. The date has been changed several times and now I am unaware of the official air date. Please visit www.global16x9.com to find out what they have scheduled. I will try to post the date when I know it but it may change again and I will continue to confuse all of you. It really is going to be a great show when it finally gets on the air! Thanks for your patience.

GLOBAL 16X9 AIRDATE CHANGE!

This post is to just let you know that the Global 16x9 segment will air SATURDAY FEBRUARY 19th at 7:00pm. Tune to your local provider's Global station to watch. This is different from what I have been telling everyone. I received an email from the Global staff notifying me of the date change due to the Grammy's. I apologize for the confusion. They have footage from inside the operating room, recovery after the surgery, interviews with doctors and the interview with Shaun and me. The segment they did last year was great and I expect this one to be even better!

Biopsy #5

Thursday was "Toronto Day" and we left the house at 5am.... The doc said that the pressures in my heart are great! Next we went over to clinic and then down for an echo. Typical Toronto Day.
The results from the biopsy showed Class 1A rejection. That's great! No changes.

Let's get moving!

It's been a fairly quiet couple of weeks. I had a two week span between biopsies, which was a nice little break. I go back tomorrow. We all moan about the biopsies but to be honest, it's a nice comfort to verify things are under control and it's always nice to see the awesome transplant team.

I've taken the initiative to do some of my own exercising. Doctors have told me about the different expectations of exercising after a heart transplant and I'm trying to get comfortable with those sensations. I'm told that since the nerves in my heart were cut I need to retrain them to acknowledge required changes in the heart rate. I've been told that since my brain won't know when to supply adrenaline I will get really tired and then all of a sudden, the adrenaline will kick in and I will be unstoppable! Look out Rockette! (My Rocky Mountain bike I named Rockette.)

I have been getting on the treadmill for about 20 mins almost every day for the past week or so. I have also been doing some yoga on the Wii. Ok, I've been playing the games too. But it's all exercise, right?

The exercise feels really good actually. I notice unusual sensations, for example, towards the end of my 20 mins on the treadmill my hands get really, really hot. They feel like they are burning. Weird, eh? I don't push myself too hard because I haven't met with the rehab staff for advice yet. That will be next week.

Here's a little secret, I actually have a fear of treadmills.... Go ahead, laugh. I will tell you why I have this fear. When I was first diagnosed with dilated cardiomyopathy I was scheduled for a stress test with the local cardiologist. Remember, at this time we all didn't know much of anything about my disease. I got on the treadmill and felt fine through the whole test. When I got off the treadmill my heart rate began to increase and it reached about 350 beats per minute.

So my fear is from a real source. You have to admit, that's crazy. Now my conscious mind says that everything is different now, and it really is. I was in great shape when I was on the LVAD and now I expect it to be even better. However, I will never forget that experience.

WHAT IS THAT??!!

The public relations staff from Toronto General Hospital sent us more pictures from inside the operating room during my surgery. The first one is of two of my heros, Dr. Cusimano on the left and Dr. Rao on the right. Both working very hard! The second is a different angle of the flabby mess-of-a-heart that was thankfully taken out of me. It's amazing that the muss was actually keeping me alive!

"It's a very strong heart." The Waterloo Record

This is the article in the Waterloo Record today. Johanna did a great report! I'm really happy with it. Check it out here. And, check out my handsome husband!!