Friday, June 3, 2016

Taylor shares about her heart transplant


Hi everyone, its been awhile since my last blog post, and I have to say life is just whirling right now. I finished up Brimfield Antique Fair with my son, Justin Power.  We also made the decision to close his shop, Pioneer Goods Co., in Boston.  Although it was heart wrenching in some aspects, in other ways it was a clear cut decision for Justin to move in another direction.  Retail Home Decor shops are incredibly time consuming and a true labor of love.  Even when a shop wins accolades, awards and such, it doesn't mean it translates into the bottom line.  And while many can run a shop without taking home a paycheck, this was not the case with Justin's store.  Online and big box stores have essentially taken out the little guys, and I cannot express how important it is to try to make a conscious effort to support those still in the game.
Anyway, so after Brimfield, Justin and the family did the needful and wrapped it up.  It was exhausting both physically and mentally.  Now the dust has settled and I am returning to my new retired from shopkeeping life, and Justin has moved on to a new position, working with my husband in his growing excavation business.  Together they will accomplish great things, and its wonderful to still be able to work in our other small family business, with plans to make it bigger and better.
Another amazing person in my (extended) family, Justin's sister-in-law, Taylor, has been through a very hard journey, and she is finally coming out the other side. Tay has written a letter to us about her heart transplant. I cannot thank all of my friends and readers here on the blog and on Facebook for proving how wonderful humanity can be....no matter where you find it.  People have been truly amazing and supportive for Taylor during this time.  And now she is sharing her thoughts on how it all went down, and what the process was really like, how she got through some of the darkest days and what she has learned (so far) throughout this unique journey of hers.  
Taylor, we LOVE you so much, and I wish for you to find all the 
happiness in the world, you deserve it.  xoxox


(Taylor, Madison and Justin, the night of my son's engagement party three years ago.)


Today marked 6 months with my new heart.
It continues to blow my mind how it can seem like it just happened yesterday & that it happened so long ago all at the same time. I can’t quite explain it. There are so many things that I want to say to everyone reading this but I struggle to find the perfect set of words.
After I was first diagnosed with Dilated Cardiomyopathy, I continued living my life as a normal girl in her early twenties. I focused on my studies, family & friends, and my health (with a few pills and cardiology appointments thrown in the mix). In discussions with my cardiologist at the time, talk of devices to maintain my heart health and a transplant were always brought up as a possibility much further into the future. I carried on with no symptoms of my disease and almost no worry at all as to how it might impact the future that I was working toward. Fast forward 4 short years later, I was sitting in a hospital bed at Brigham & Women’s Hospital with my doctors telling me that without open heart surgery to implant the LVAD, I would not survive the time it would take to receive a new heart.
I remember one night in particular in April of 2015, three months after my LVAD surgery. I was laying in my bed at my parents house in Maine. I unknowingly had developed a bacterial blood infection within my internal pump and was experiencing a frightening set of symptoms. My heart was racing, alarms on my device would blare with any sort of movement I made. I was dizzy, lethargic, and sweating through my clothes and my bedding at least 3 times throughout the night. This happened every single night over the course of a week. I remember looking at my phone and having it read 5:38 AM, and I had yet to fall asleep. As sick as I had been while in the hospital, I had never felt so close to death in my life as I did in that moment. I remember pulling the soaked covers over my head to try and muffle my sobbing, not wanting to wake my mom in the other room and worry her with how terrified I was, and just pleading "Whoever is up there, please just let me wake up in the morning”.
I am FAR from perfect, but in moments like that night in April I would question… “Why is this happening to me?”. I might have had a few drinks on a weekend night out, I never smoked, never did drugs, did not often gorge on junk food, stayed physically active; I could not understand how the life I had led up to this point had resulted in something so catastrophic. It got me thinking about the work I do as a psychiatric occupational therapist. Much of what I do in my role at the hospital I was working at before I got sick was to develop & lead one-on-one or group self-reflective discussions on a variety of subjects, including ideas on change, the power of positive thinking, gratitude, changing your thought process to promote positive outcomes, & how seeking out support and asking for help when you need it is not a sign of weakness, but rather a sign of strength. It was then that I had a realization: who was I to dedicate my career and life to passing these values onto my patients, when I can’t even live my own life by those standards? I realized I had so much to be thankful for, and that starts with all of you.
I have considered my father, mother, & my sister to be my best friends my entire life, and when my brother-in-law Justin entered our lives, he immediately became another part of our unit like he had been there all along. They all sacrificed so much to be beside me throughout this entire journey, I can’t begin to imagine how scary it must have been for them to sit by helplessly and watch someone they love in pain. When people commend me on my strength over the past 2 years, I can only think of the strength of those four to be strong when I couldn’t be. To put it simply, I hug them each a little tighter now. I promise you that.
I’ve been lucky enough to have the support from the many different communities that I have been a part of throughout my life. My hometown community came together and organized an amazing benefit dinner that I know took so much planning and hardwork. It re-affirmed why I will always be so proud of where I came from. The benefit held here in Boston that my best friend from college organized was also a huge success, and so many people came out to sing & dance along with Jimmy Plunkett and support the cause. In addition, so many individuals from UNE, Bournewood Hospital, the Chalmers/Power group, CMMC, Brigham & Women’s, The Massachusetts Chapter of the AHA & Go Red for Women, BMC Cardiac Rehab, Parish Cafe, extended family, acquaintances, and complete strangers reached out to show support for my family and I. I wish I could thank each and every one of you individually and thank you for all that you’ve done for myself and my family. I will never be able to repay you all. As I’ve said before, I promise to pay it forward in whatever way I can. You have restored my faith in humanity and the love, kindness, and generosity of others.
Lastly, I have to acknowledge the reason that I am still here- my donor. When people ask me about receiving “The Call” I usually hear, “You must have been SO excited!”. In all honesty, excitement was the last thing I was feeling. Instead, there was an immense sadness knowing that while my family and I received the news we had been waiting so long to hear, another family was having to say goodbye to someone that they love. I couldn’t fathom that in that moment, they were also faced with the decision of whether or not they wanted to honor their loved ones wishes by donating their organs. My transplant coordinator told me that it is recommended to wait a year until writing a letter to my donor’s family, but even at a little over a month post-transplant on National Donor Day, I wanted so badly to write to them. There is atleast one moment in every day that I think about who my donor was, and I sometimes find myself standing there with my hand on their beating heart, wondering where the heart inside of me has been and what it experienced before reaching me. I hope that when I do write my letter to my donor’s family, that they will accept it, read it, and want to meet me someday. There is nothing I want more than to be able to tell them that not a day goes by without me closing my eyes, clutching my chest, and thanking them for the most selfless gift. If there is one thing that has been the hardest thing to deal with post-transplant, it is the strange guilt that comes with the realization that I will never be able to thank my donor. The closest thing I can think of to a thank you is to live a life that they would be proud of. My mom summed it up best, saying once: “I don’t know who your donor was but I love them just as much as I love you and Madison”. They will be a part of me forever, even when someday it is no longer their heart that is beating within me. I couldn’t be more proud of that.
There is a theory proposed by Erik Erikson, who was a well-known developmental psychologist and psychoanalyst. He suggested that there are eight distinct psychosocial stages that we experience throughout the lifespan. From the moment I learned of this theory in my undergraduate studies, there has always been one that has stuck out as my favorite; the final stage. The eighth and final stage is described as “Ego Integrity vs. Despair” and takes place between age 65 and the end of ones life. In this stage, it explains that as you approach the end of your life, you can look at it in two different ways: you can choose Despair, and look back on your life with guilt, regret for things that we never got to experience, or sadness that it is all coming to an end. Or, you can choose Integrity; you can look back on the life you have lived and be proud of your accomplishments, focus on the beauty of your experiences both good and bad, and know that you lived your best life. In my work as an occupational therapist, I’ve always said that I want all of my patients, regardless of age, ailment, illness, or situation, to choose Integrity. In my own illness and recovery, and in times of anxiety and fear, I would often think about all that I hadn’t yet been able to experience: a long fulfilling career, traveling the world, watching my sister and Justin start a family, watching my parents become the most wonderful grandparents, meeting the love of my life, and someday hearing a little one running around calling me “Mum”. I just kept thinking, "I'm not ready. I don't feel like my work is done here yet". It is so easy when things are hard to focus on these sorts of negative thoughts, but I ask all of you to choose Integrity in whatever stage of your life you may be in. Don’t waste a single second not living your best life or reminding the people around you that you love them. You have all already done so much for me, but if I could ask you to do one more thing, it would be to please choose Integrity. I promise you won’t regret it.
I am feeling stronger physically, mentally, and emotionally each day and even though I still have a ways to go in my recovery, I am tackling every challenge one day at a time. I can only imagine what things will be like in another 6 months! Someday soon when I am back to work and leading a “normal” life, I will always carry with me the love and encouragement that you all have showered upon me. In this post, I have decided to include a picture of my native heart right after they took it out of me, to replace it with my new heart (sorry in advance if you are squeamish!). I was originally planning on keeping this picture to myself, as it is the last piece I have of the heart I was born with. But, ultimately, it felt like the right thing to do to share it with you all, as each and every one of you have held such a big piece of it for so long. Once again, my gratitude and love for each and every one of you is endless. Thank you, thank you, thank you 
-Taylor XO

7 comments:

  1. Lovely to hear how well she is doing. Wonderful shops are closing every where you look now, so sad. I wish you all the best!

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  2. What a special and brave young woman. My she go from strength to strength in all that she does, and any man that she chooses to spend her life with, will be blessed indeed!!

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  3. Thank you for sharing this story. Having had a life threatening condition, that while finally I am living a fairly healthy life. Amazingly 12 years later I am beginning to resume an active life. I am very grateful.
    My best to Justin as he ends this chapter, but remember when one chapter turns another is there and a new start will be in front of him. I on the other hand have decided to reopen my internet, obstacle keep showing up, and I will soon like Justin make a decision if I should continue to pursue to rebuild a internet store that has been in limbo for 18 months. Best of luck Justin and Taylor.

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  4. How absolutely beautifully and bravely said by an extraordinary young woman. So glad she is doing well.. Was extremely impressed by her and her letter. What an experience for anybody to live thru let alone such a young woman. Godspeed Taylor

    We have been waiting and praying for our 22 yr. old grandson whom has cancer for 2nd. time in his life. We aren't allowed to even send him our love as his Mother dislikes us so strenuously she's blocked us in every way she can from contact with him as well as other members of our family. As you can imagine it's heart breaking for those of us who are banned from his life. We can hardly get to communicate with my son. We can only see grandson to know how he's doing on his Facebook page. He is such a brave young man who has suffered so much, too much in his young life. I pray Taylor continues to get stronger and our grandson finally beats this nasty cancer.

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  5. Taylor, you are an inspiration. Thank yo for sharing your story and about living with integrity. Blessings to you and all the family and friends.

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  6. Having been witness to several families who elected to share the gift of life and create an everlasting life for their loved ones who have left us too soon, I can assure you, Taylor, this family will be honored and proud to know you. You exemplify integrity. Continue to live your life beautifully. Best to you, dear. Thank you for your thoughtful message. You are full of grace.

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  7. What a beautiful post. My prayers and blessings for her. She is a very brave young women. Thank you for sharing with us especially her very personal photo of her heart. That must have been very hard.
    I am also thankful for your blog. You are very sensitive to all needs and always touch my heart with your compassion. You have a great family and I know your son will be successful no matter what he does. Yes a family business is always rewarding.

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