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!!

Nothing I can't handle! Biopsy Number 4

Well it's seems that I'm going to be stubborn about rejection. I was told that I could be difficult because I'm young and I had an LVAD. My biopsy results showed Class 2 rejection this week. No hospital visits this time, however they have me taking an extra large dose of Prednisone for 3 days. My dosage is at 20mg per day and now they have me taking 50mg, on top of the 20mg, each day for 3 days. That's the only change for now. Hopefully the Prednisone won't get me too edgy, anxious and irritable. Minor detail.

I did an interview yesterday for The Waterloo Record and the reporter said that sitting with me is "like sitting in a room with a hummingbird." That's how I feel sometimes. The sensations in my body have changed since transplant and I'm re-learning how to read my body. Sometimes I wonder if the LVAD was more peaceful...

I want to stop for a minute and say something about all of these medications. Bottom line, my heart would be no good without them. All of us transplant recipients complain about the meds and their side effects but we all appreciate them. The chemists, doctors, researchers and everyone involved in their creation and growth should be commended for their work. Keep up the good work!

A Friend Like Me

Today and every day we need to make efforts to accept our neighbours as they are, no matter their challenges.

January 20 is International Day of Acceptance.

"Tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living."

Everyone has a challenge and we need to become accepting and understanding of disabilities and differences. This post is dedicated to the individuals with disabilities, their families, their supporters and those working to make the world better for persons with disabilities.

Visit 3E Love

A FRIEND LIKE ME

Please don't be afraid of me
I want to be your friend.
And if you get to know me
Your rigid thoughts might bend

Thoughts that I am different
From others that you know,
I really am no different
And this I'd like to show

I live and breathe and laugh and cry
I love to play and learn,
I sometimes do things differently
Which can cause some concern

You see, some say I'm special
I guess this much is true,
But if you were to ask me
I'd say you're special too

We're all a little different
No two are just the same,
It's really something wonderful
that way there is no blame

When things don't go just perfectly
And others get confused,
And say things like "poor child"
and other terms they use

It's okay if you look at me
And might not understand,
It's okay if you touch me
And even hold my hand

My life has many obstacles
Much more than you could know,
But that's not what I dwell on
I'm me, that's all, and so...

Please don't be afraid of me
I want you just to see,
How truly great and wonderful
A friend like me can be
~~~~~~~~~~~~~~~

With Love, Tracey Porreca

Biopsy Number 3

Well I had my third biopsy yesterday. It was a crazy long day. My Dad was my butler/driver. Thanks Dad! I had the biopsy done at 7:15 am, clinic at 10am and then down to echo for 1pm. The team from Global went in for my clinic appointment with Dr. Ross. She spent some time with me addressing my questions and concerns. She is very comforting and made me feel much better about everything.

I snapped a photo of my biopsy. You can see the tiny red dots at the bottom of the bottle.

"I want you to come on, come on, come on and take it,
Take another little piece of my heart now, baby, (break a...)
Break another little bit of my heart now, darling, yeah. (come on)
Hey! Have another little piece of my heart now, baby, yeah.
You know you got it if it makes you feel good,
Oh yes indeed."



I'm really happy because the nurse called today to tell me that I have NO REJECTION!!! YAY!!!! The best part is that I don't need to spend the weekend getting more needles and drugs. The transplant team also decided to slightly reduce my Prograf, an anti-rejection med. Hopefully this reduction will help with the tremors I've been experiencing. All is well.

Big Bro and Sis

I would like to dedicate this post to two of my special heros. My big brother Derek and his wife, Vicky. They live about 10 minutes from us and have been there for me throughout my whole journey. Derek would come for lunch during the day when I was unable to cook for myself and Vicky would take me to run errands and spend some slow days together. We always have a great time.
They have two amazing kids, Owen (6) and Mya (almost 5) who always brighten my day and bring laughter and joy wherever they go. I'm the luckiest Auntie A in the world!
Thank you Derek and Vicky for being here for me and for just being you! I love you.

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.

Pump-Pal Stars!!

I'm so happy to share that two of my friends and "Pump-Pals", Pam and Janet were featured on CTV Southwestern Ontario (local to Kitchener) to promote organ and tissue donation. It was great to see them exercising and sharing their story. I find that personable stories have a greater impact.

Pam has a Heartmate II, the same as what I had and Janet has a different kind of LVAD called Heartware. I don't know as much about Heartware but it is similar in concept to the Heartmate II. Both Pam and Janet are avid volunteers in the Life Donation Awareness Association of Midwest Ontario and are helping to make a difference in the world of organ and tissue donation.

Great job Pam and Janet!!

You can see their segment here.

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!!

Biopsy and Meds

As Shannon said earlier this week, I had my first biopsy on Wednesday December 29th. It's the first of a strict routine. I will be going for a biopsy every week for a month and then every two weeks for a while and gradually less regularly as time passes.

I got the results from the biopsy and there is no rejection at this time. They told me the white blood cells are passing through but not attacking my heart. My Prednisone has been lowered already. While this is a good start, I do expect rejection at some point but it does not worry me. My transplant team is monitouring me very closely. I've got a great team!

As for the meds I take, I'm sure many of you are interested. Right now I take 30 pills a day of about 12 different types. Three of those types are anti-rejection meds, Prednisone, Celcept and Prograf. Very powerful stuff. Other meds are to prevent infections such as CMV and PCP Pneumonia. Most of the other meds are supplements to help prevent the major side effects of the anti-rejection meds. One major side effect for women is Osteoporosis so I take lots of calcium and vitamin D. Another side effect is high cholesterol so I take one med to help control my cholesterol. Here's a pic of my daily med container.

To My Donor Family

Thank you for the gift of life,
For letting me be me.
For all that I can know by words,
And all that I can see.

For all the music I can hear,
And all the songs I sing.
For all the joy that comes to me,
And all the joy I bring.

For all the food that I can taste,
And all the sweet scents smell.
For all the loved ones I can touch,
Who love and wish me well.

For all the beauty of the world,
Ever fresh and new.
I don't know whom else to thank,
And so I'm thanking you.

Thank you.