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

Sunday, May 30, 2010

One Year.

Today marks my one year anniversary with Shaun.

It's hard to believe that a whole year has passed by. It's been the hardest year but also the most amazing year. We have endured an incredible challenge, and grown from it. You can really learn alot about people when they are put in hard times. Shaun has stepped up to the task and taken care of me through the best and the worst. I would not be here without him.

For a long while he was literally, doing everything. He would vacuum and scrub the floors, do the dishes, clean the toilets, wash the laundry, dust the shelves.... He would also wash my hair, scrub my back, change my dressing, cook my meals, get me my slippers, fluff my pillows. He would drive me anywhere I wanted to go and get me anything that I needed. What kind of man has done all that for his wife in their first year of marriage? You'd think I would have scared him away. Nope. Not Shaun. He says he would do it all again.

Now that's a real man.

In one year we have shared many laughs and many tears. The deepest tears and the loudest laughs. We have grown individually and as a couple.

There is nothing I resent or hate about this experience. It is a part of who I am, who Shaun is and who we are together. It's been hard, but I always say....

"It is in our weakest moments we find our true strength."

Shaun, you are everything to me. You are more than everything. You are my strength, my courage and my hope. My love for you is so deep, that I will never find the bottom. Thank you for your love and for being you.

Thursday, May 20, 2010

My HEARTMATE ll: The Creed of an LVAD Recipient

My Rifle: The Creed of a US Marine
by Major General William H. Rupertus USMC, Ret.
(written following the attach on Pearl Harbor)
has been adapted for the respect of a HEARTMATE II LVAD and the Recipient.

My HEARTMATE II: The Creed of an LVAD Recipient

This is my HEARTMATE II. There are many like it, but this one is mine.

My HEARTMATE II is my best friend. It is my life. I must master it as I must master my life.

My HEARTMATE II, without me, is useless. Without my HEARTMATE II, I am useless. I must use my HEARTMATE II honest and true. I must remain more diligent in diet and form than my enemies that attack my health and heart. I must act before it acts upon me. I will...

My HEARTMATE II and myself know that what counts in this war is not only the blood that pumps and flows, the progress or setbacks. We know it is also for the general good of future generations that count. We will...

My HEARTMATE II is human, even as I, because it is my life. Thus, I will learn it as a brother. I will learn it's weaknesses, it's strengths, it's parts, it's accessories, it's purpose and it's flow. I will ever guard it against the ravages of weather and damage as I will ever guard my legs, my arms, my eyes and my heart against damage. I will keep my HEARTMATE II clean from bacteria and have the spare equal and ready. We will become part of each other. We will...

Before God, I swear this creed. My HEARTMATE II and myself are the defenders of my well-being. We are the masters of our enemies. We are the saviours of my life.

So be it, until victory is achieved and there is no enemy, but peace and a healthier life!

Taken from: http://fromthebottomofmylvad.blogspot.com

Tuesday, May 18, 2010

Just a check-up.

Today I had a scheduled follow-up appointment at Toronto General. It's always nice to see them and have reassurance that everything is as it should be.

I had an echo first. The tech DID find a heart in there, or something that resembles a heart anyway. That's good. And Dr. Ross has decided to reduce my Sildenifil (Viagra) to twice a day instead of three times a day.

Yes, my friends, I take Viagra.

No, I cannot give you any. And no, it doesn't do "anything" for me.

I was also very excited to run into another pump-pal! He was implanted sometime in January or February of this year. It's always a pleasure to meet these people. I feel like I'm part of a special club and the people in it are not only wonderful people but actually happy to be part of the club. Well, no one wants to go through this but we have been given this gift and we intend to make the best of what we have. I heard that two other LVAD patients have been transplanted recently. That's always great news. And, hopefully I won't be long. Only time will tell.

People often ask me, do they give you any idea of how long it will be till you get your heart?

It's in the hands of someone much more powerful. They cannot give me a timeline or any idea. They tell me that I am high on the list because I have the LVAD and there can be potential issues with it. But the list changes so often that they cannot know what will happen or provide any information to me. And so, I continue to wait, very patiently.

Monday, May 17, 2010

Where does the funding come from?

A typical question about the LVAD is, where does the funding come from?

Today I was part of a fundraising event in Caledon, a small town just north of Toronto. The function was held at a beautiful golf course, the Devel's Pulpit. My Dad was kind enough to be my special guest. I was proud to have him with me. There were a few people that thought he was my husband..... He was very complimented. I'm not sure how I should feel about that....

The purpose of this event was to raise funds directly for the mechanical heart department. To answer your question, funding for the LVAD is from donations. It is not yet funded by the government. To my understanding, each LVAD costs approximately $80,000 to $100,000. I'm not sure if that includes all of the equipment, such as the controllers, the batteries, the charger, the power base unit, etc. Even though that seems expensive, it's still far less expensive than keeping a patient alive in the ICU for an extended period of time and also far less expensive than losing that patients life. We must think of the benefits the LVAD is giving to the hospital and the patient. I am able to wait for my heart transplant at home, while improving my condition to better my success when a heart becomes available.

Anyway, this function was a great experience for me. I really enjoy being included and having the opportunity to show these generous donors exactly where their money is going. The donors played the golf course and later enjoyed lunch in the banquet hall. There was an auction held where items were donated from other companies and all of the proceeds were given to the mechanical heart department. They had some really great items, such as a big screen tv, a popcorn maker and stand, a digital camera, a computer monitour, a 3-night stay in New York city, and many other things. It's incredible to think about all of the generosity that has contributed to this event.

I was very excited to be at this event to enjoy the company of the head cardiac surgeon of the mechanical heart and heart transplant departments, Dr. Rao. It's not often that patients are honoured with their doctor's company on a more casual basis. I am very proud to say that he is my doctor. Not only is he an amazing doctor, but a fantastic auctioneer! He raised a lot of money for the department. He is a kind person and clearly takes his work very seriously. Noone could miss him, as you can see from his flashy pants!

Another person I was honoured to spend my time with at this event was my former "pump-pal", Jenn. She was supported by the LVAD for about a year and a half and has now been transplanted. She came to visit me in the hospital just after my LVAD surgery. I remember being high on many pain killers and asking her, "So, does it get better?" And she replied, "It gets ALOT better." My thought was, lady, you are full of it! I was in so much pain. I could not imagine a world without it. Seeing her there gave me hope of the future. I had faith that I would get through this challenging time and look like a normal person again. Jenn is an inspiration. She illustrates such strength and a genuine sense of appreciation for life. Thanks to Jenn for everything she has given me.

Jenn (my ex-pump-pal), Dr. Rao and myself. A very proud moment to be in the presence of such wonderful people. Did you notice Dr. Rao's pants?

I would like to take this moment to send a strong and warm thank you to the donors. I am alive because you contributed to the fund. I would simply not be here if it weren't for your generousity. Your money is hard at work in the people who have been given a second chance. We do our best to make a difference. Be proud of what you have done.

Please consider a donation to the mechanical heart department at the Peter Munk Cardiac Centre. You can donate online at www.inaheartbeat.ca. Thank you.

Tuesday, May 11, 2010

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!