Wednesday, January 26, 2011
Saturday, January 22, 2011
Friday, January 21, 2011
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!
Thursday, January 20, 2011
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.
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
Friday, January 14, 2011
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.
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.
Tuesday, January 11, 2011
Saturday, January 8, 2011
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.
Friday, January 7, 2011
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!!
Sunday, January 2, 2011
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.