I could hardly wait for the day when I could write my donor's family and hopefully find a way to express my gratitude to them. It took me about 2 weeks to finally get the words on paper to say a little about how I felt... I have debated sharing it here, but this where I keep important things that are happening in my life...and writing this letter was very important.
I then had to send my copy of the letter to my transplant social worker, who had to approve it (notice no last names, state names...ect...there are LOTS of rules to writing this letter) and then forward it to the Intermountain Transplant Coordinator who also has to approve the letter. It then goes to the donor's transplant coordinator and then is mailed to the donor family...WHEW...just to say thanks.
My donor's family has the choice if I get to know anything about my hero.
being the control freak I am, this has been very difficult for me, because of yet, I have not heard from them.
Yesterday, while I was in Utah for my latest heart biopsy, I was setting and visiting with my brother, Ro...
He asked if I had heard anything about my donor and I told him, "No, and it is starting to drive me crazy".
He just looked at me and said, "Maybe you are not suppose to know, and you shouldn't worry about it any more".
Just matter of fact like...
I was just walking back to my car to start my 3 hour drive home and at that moment I thought, He is right...it shouldn't matter, the fact is that a family somewhere has read my letter and they know that their loved one's heart is beating strong and that may be enough for them to move forward.
My selfish thoughts of who was this person should not be a weight but a peace that they have shared a part of themselves with me...without knowing ANYTHING about me.
Life is good and I am grateful.
If you want to read my 3 page letter here it is..
May 14, 2011
To my hero’s family and friends,
I have anticipated writing this letter for the past year and all the things I wanted to say to you, and now that I can, I cannot find the words to express my gratitude to you and the feelings I have for my donor and their family. How do you say thank you enough? How do you say I am sorry for your loss? How do you say you are always on my mind? How do you say your loved one is my hero?
There are so many things I would love to know about my donor. If they were a boy or girl, how old they were, what they liked to do, even what happen that I now am the benefactor of their heart? These are thoughts that I have had each day for the past year. There are so many things I want to tell you about the past 6 years but more importantly this last year.
My name is Janiece, I am a 49 year old, daughter, sister, wife, mother, grandmother and friend. I enjoy being with my family, cooking, baking, taking pictures, researching history and gardening. I love being around water, be it a quiet lake or a rushing river and I believe in miracles.
I had a heart attack in April of 2005. It was caused by blood clots in my heart that caused extensive damage. It was a short time later that I was referred to the cardiology team that I see now and that manage all of my transplant visits.
Towards the end of 2009 I knew that my heart was “getting tired”. I no longer had the energy to even do the simplest of things such as grocery shopping, taking care of my home, going out with friends or even taking a shower.
In February 2010, I was told that I would need to be added to the heart transplant list. Because of where I live this would mean that I would have to relocate closer to my cardiology/transplant team. I have a wonderful extended family and left my home and husband to live with my brother and his family in another state. As you can imagine this was a difficult choice to make, but after many long talks with my husband, children and my extended family we all knew that even as difficult as it was I would someday get to come back home.
On May 13, 2010 around 7:00pm, I received the phone call we had been waiting for. As I listened to the voice on the phone, I could only just stand there with the phone to my ear as I heard, “Janiece, do you understand what I said to you? “We have a heart for you”. My daughter and her husband had just arrived from Argentina two weeks before to be closer to me; she quickly called my husband and sons and told them to start the drive to us. As I packed my bags and started to get ready to leave for the hospital the most unbelievable feeling came across me, here we were all excited with tears running down our faces, and I could not stop thinking of you… undoubtedly having tears running down your faces too, but not with the feelings we were having. I said a quiet prayer for you for comfort and of gratitude for the choice you had made.
My husband and sons arrived about 3 hours later. We had a nice visit but because my heart rate had become very erratic they kept me somewhat sedated.
On May 14, 2010, I receive my hero’s heart. I do not remember going into surgery.
Waking up from receiving this amazing heart the thing I remember most was that it “ROCKED” my body. Really, it was beating so strong that I was rocking in the bed to its beat! When the transplant team came into visit after I was awake they said, “It was a perfect fit”. I was in surgery for only 4 hours and 45 minutes. My recovery went really well. On May 18, 2010 I walked 2 miles around the ICCU!! I couldn’t believe it, only a week before I could barely walk around the house. The other thing that I noticed was the color I had in my face and lips. I joked that I was going to have to buy a different foundation because I would look like I had a clown face.
I was released from the hospital 10 days after the transplant. I went back to my brother’s home for another month to recover and become stronger.
On June 21, 2010 I became a grandma. My son, Josh and his wife Ali had a baby girl. I couldn’t believe that I was a grandma, and that I would get to live to see her grow up.
The first part of July I was able to rent an apartment where my daughter and son in law stayed with me. This gave me the independence to take care of myself and it felt good to know that I could. I loved being out and doing things. We went on hikes, shopped all the things that I had not done for such a long time.
In September I was able to move home. Oh how I had missed my husband, family, friends and home. I could not take it in enough. I would love on my little granddaughter and tell her about my amazing heart and because of someone very special I would get to play with her all the time. At this time our youngest son, Derek moved back home from Arizona. When we visited about him leaving his job and things there and what were his thoughts, he just said, “Mom, I just want to be closer to you and the family right now.” I will admit I was excited to have my children close by again.
As each holiday came around I thought of you. I talk to my heart a lot. I would ask, “So what do you like to do for the holidays? I hope you like turkey because we will be eating turkey. Hey, we are going to the mountains to get a Christmas tree, It will be lots of fun and a good work out for both of us! New Year’s Eve…was really a night of refection for me…almost melancholy with such gratitude for the past year.
February 9, 2011 my 2nd granddaughter arrived to my daughter Kira and her husband, Sergio. Again, my heart was full to know I would get to watch this sweet baby grow up.
A year later, and we are doing really well. I make trips a couple of times a month to the transplant team for appointments and biopsy’s. My rejection levels have been good. I love the days that they do the echo of this amazing heart. When I used to watch the echoes of my old heart I would wonder if it would even be able to make a full beat it was so slow (yes that was with the pacemaker helping it!) But, I can’t stop smiling as this heart just beats all over the place. It is strong and I love watching it.
Plans for the summer, yes I have plans. My son Josh will receive the title of Master in Taekwondo which I will be able to travel with my family to see him receive. I watch and play with my oldest granddaughter during the week and marvel at all she has learned in one year. My daughter Kira, her husband and baby have moved back to the states. I enjoy snuggle on their sweet little girl every day. My youngest, Derek stayed home went back to school. My husband and I are happy and loving being together; we now talk of the future, what we want to plant in our garden and where we would like to celebrate our 30th wedding anniversary this year.
I know none of this would be possible without the sacrifice that your family has had to go through. Again, I am not very good at writing my feelings, but I hope you can feel my gratitude and love for this remarkable gift. I promise that I am going to live my life to the fullest that there will never be a question if I took for granite the opportunity to have my hero’s amazing heart.
With Sincere Gratitude,
Janiece
