Taylor's Heart Fund
Now it is Taylor who needs our help. At age 20, Taylor was diagnosed with dilated cardiomyopathy, which translates literally to "heart muscle disease." Though she lived for many years without experiencing symptoms, this past Thanksgiving, Taylor began to feel worse than usual. After a week's stay at Boston Medical Center, she found herself back in the hospital once again just before Christmas. This time, Taylor had regressed into end-stage heart failure. Her doctors at Brigham and Women's decided to perform surgery, implanting a pacemaker (for her irregular heart rate) and a defibrillator (as she is prone to fatal heart rhythms). Though she was feeling better shortly after her surgery, it didn't last very long and she was admitted back to the hospital in January.
This time around, things are as serious as ever. Taylor's doctors will be performing open-heart surgery to implant a Left Ventricular Assist Device (LVAD). This device will help pump blood from the left ventricle of her heart to the rest of her body. A control unit and battery pack are worn outside the body and are connected to the LVAD through a port in her skin. In addition to her LVAD surgery, due to the seriousness of her condition, Taylor is also awaiting a heart transplant.
This is where we need your help. In addition to the tremendous cost of this surgery (the average cost of surgery and post-op care is around $250,000- hopefully, most of this will be covered by insurance), Taylor has not been able to work since her initial visit to the hospital, just before Thanksgiving. After her LVAD surgery, she will continue to be unable to work for the foreseeable future. While Taylor herself would never ask anyone for a dime, we, her family, are asking for your help. We hope to gain your support and help in alleviating financial strain to allow Taylor the time to recover and focus on her health.
Madison, Taylor's sister, will keep this page updated with Taylor's progress as she recovers from LVAD surgery (scheduled to be performed on Wednesday, January 21st). In the meantime, we ask that you continue to keep Taylor in your thoughts and to send any sort of positive energy or prayers her way. Some have been asking for an address where things could be sent to her. For the time being, please feel free to send things to Madison, who will bring things to Taylor while she moves between units and rooms:
47 Roberts Street
Malden, MA 02148
Finally, we'd like to encourage anyone that has ever considered becoming an organ donor to think about the life you'd be providing for others. You may save up to 8 lives through organ donation, and can affect many more through the donation of tissue. Thousands of individuals die every year awaiting transplant, but we have the power to change that. To learn more, and to register in your state, please follow this link: OrganDonor.Gov
Taylor's new heart is a perfect match- so perfect that the doctors really can't believe it. There are many things that need to be considered in the organ matching process, including blood type, antibodies, body size, and medical history. Taylor and her donor were in perfect alignment. We really don't know anything at all about Taylor's donor, except that on December 2nd, they saved AT LEAST two lives- this was a double procurement, meaning that at least one other organ was taken for a transplant scheduled on that very same night.
She was wheeled away for surgery prep at 6:40 on Tuesday night. At 4:17 AM we found out that the heart was in and beating on its own, and that her surgeon would be attempting to close her (this is actually somewhat rare, and many patients return to the OR a few days after transplant to be fully closed up). We saw her for the first time around 6 AM, and it was the most beautiful sight! Later that day, around 5 PM, we saw her again, and this time she was able to communicate with us, despite the breathing tube and ventilator. We told her that the new heart was perfect- that she was free from the LVAD and all of the restrictions, and that things went better than anyone could have imagined. Although she couldn't speak or open her eyes, she squeezed our hands and cried a little, so we knew she understood.
As of today, she is fully extubated and breathing on her own. She is able to talk and laugh with us, eat some soft foods, and sit up in a chair. Her numbers look absolutely fantastic and her new heart is so strong.
So begins a new set of challenges- adjusting to life post transplant is not easy. There is no saying how long she will need to be in the hospital- some people stay for two weeks, some stay for a month or more. She will undergo frequent testing for rejection. Since the new heart is technically a foreign object, her immune system will try to fight it. As of now, there are no signs of early rejection. A biopsy will be done next week (and almost every week or two weeks for the next year), to measure rejection and adjust medications accordingly. We aren't totally out of the woods yet- she still has 5 chest tubes that will eventually need to be removed, and a number of dressings to care for. One day at a time.
To sit by her side and look into her eyes is overwhelming. I can't put into words what it is like to know that as we received the best news of our lives, another family received the worst, and somehow was able to make the decision to donate their loved ones organs to save others. How do you ever express enough gratitude for that? Last night before going to bed, Taylor told my dad that she hopes the donor family decides they'd like to meet her some day. She wants to tell them in person that there will not be a single moment in her life that she will not take care of their most precious gift.
Thank you again for the thoughts, prayers, phone calls, and messages. Taylor might not respond to anything for a bit, but she sees everything. I will be sure to update after our first biopsy.
We really couldn't have done this without the love and support from people in networks near and far. Thank you for everything.
I will write a lengthier update later today. There is no way to describe how thankful we are for Taylor's donor and their family, her surgeon and medical team, and every single one of you.
We didn't rush and scramble, and we made our way to the Brigham and arrived by 8. Taylor's parents made their way down from Maine and joined us before noon. As we learned last time, it would be a lot of waiting before anything major took place.
Taylor went in to surgery at about 6:30 and she's been in there for almost three hours as I write this. It seems like this heart might be the right one. Her surgeon, Dr. Couper, said he had "no suspicions" about this particular heart, a stark contrast from the last time we went down this road.
The mood in the room was hopeful and happy, though there is a long way to go. If you say a prayer before bed or have some positivity you'd like to share, please send it Taylor's way.
Thanks for reading and thank you for everything you've done along the way. You've been more helpful than we could have ever imagined.
-Justin (Madison's husband, Taylor's brother-in-law)
What a Christmas blessing!! Miracles do happen and Taylor is one of them. You will all remain in my prayers and thank you so much for the updates!
Thank you for the update. Such a positive, inspirational story on so many levels. Continued thoughts, best wishes for her recovery.
Prayers have been answered!
This is such incredible news! I will continue to pray for Taylor's good health.
Great news! We keep you in our thoughts and prayers.
What wonderful news! I will continue praying for Taylor and the rest of the family. Sending love and light. God Bless
My husband waited two years for a liver a lot of dry runs ! I feel this is the perfect heart for your daughter and she will be so healthy! My husband got his liver last dec 29 healthy as ever! It's a miracle! Your daughter will be too! Thoughts with your family ! Xo
Praying for Taylor and the entire MacLean family.
Taylor and family, We continue to keep you in our thoughts and prayers. Thank you for the updates. Love, Jane, Mike, Scott, Alison and Molly.
Taylor and family - Best of luck to you as you embark on this new phase of the journey. I pray that the donor heart matches all the specifications, the surgery goes well, and you are up and on your feet very soon! I can't imagine all the emotions running through your heads right now. Sending out positive, healing vibes into the universe for all of you :)
Taylor. We are praying for you regularly in hopes that you are staying strong and healthy, and that a suitable heart-doner can be found soon. Love to you and the family from all of us :-)
Thanks for the update! It's hard to imagine what Madison is going through. I'm impressed with her strength and courage and mostly with the positive attitude she seems to have. Hoping she will get a new heart soon so she can enjoy life as she should at her age. She sounds like a beautiful person. She is lucky to have such a supportive sister, too. Love, Louise (friend of Amy)
Thrilled to hear that Taylor is home and doing so well. and thank you Madison for all your timely updates. you are all amazing people and God Bless you Cyndi and Dave for all you have been through as well..Love you all very much Nana/MomXOXO
Madison, thank you so much for the ongoing updates. With all that you are going through I find it incredible that you take the time to keep us all informed. Your Dad told me that he has amazing daughters. I absolutely agree. My thoughts and prayers continue to be with Taylor, you, and your family.
H Taylor and family - Happy Birthday! We are all thinking of you and your family. Everyone has a kind and wonderful story of when you were at UNE. The OT students are planning a fundraiser to help you out too. You are an amazing young woman. We will keep you in our thoughts and prayers. Love, Jane and UNE OT faculty
Happy Valentine's Birthday! (It's my Mom's birthday, too)! So glad to hear you had a great day on your special birthday. I have a daughter who is the same age as you are-so know how special you are to your Mom-and know how she must be so happy to have good news of your progress. You don't know me-but I'm friends with Amy through tennis team-where she was in inspirational and most fun captain of our team. I know she is cheering you on now. Sending loving thoughts to you and hope you get a real heart soon.
Taylor you don't know me but I feel like I know you. I worked for your dad in Lewiston. He gave me the gift of employment at DHHS. I pray that your greatest birthday present is the gift of a new heart and a long healthy life. You are always on my mind and I pray for you multiple times throughout the day. Stay positive and keep smiling. My thoughts are with you and your family. HAPPY BIRTHDAY TO YOU!
Happy birthday and happy valentines day to my bravest and most beautiful friend. Everyone's positive thoughts are with you, especially today. xo
Taylor, you and your family are in my thoughts every day...praying for a heart donor and a speedy recovery...Taylor continue to have faith and stay strong...you've got this beat...
Taylor, Please know that your B'Wood family is praying for you. I think about you a million times a day. We are sending you strength and love. Stay strong! Xoxo