I am starting to feel like my old self now at 8 months post transplant. Yippee! I am so grateful, so thankful and so blessed. It is truly a miracle. Prior to my transplant I tried to anticipate all of the worst scenarios that could happen as a result of the transplant with my family, friends, home and work and make preparations for all. Carl and I revised our wills, made sure I had a living will, chose Carl and Alex as my power of attorney and I assigned a board of directors for Sims Patrick Studio in case I was incapacitated for any reason. Similar to when I was pregnant with Alex, I found myself going through a nesting period at home…it felt similar to a maternity leave but this time, I was the baby coming home. I started cleaning, purging and organizing things.
Once I got my closets and desk cleared out, I was ready for the ordeal and entered the hospital ready to fight with all my heart and soul and the most positive attitude I could pull together! After I entered the hospital in February of 2019, everything in my life went on hold because no one could tell me with certainty the final results of my transplant.
Now that I have passed the 8 month mark, I am feeling good, more confident, working full time and traveling again with my team. I am starting to make some long term plans. I have a new lease on life.
I’m so blessed and grateful to my donor who saved my life! My incredible transplant team at Emory of Dr. Waller, Dr. Lechowicz, the transplant floor team of nurses and PA’s as well as all of the nurses and the PA’s in clinic, CeCe, Joel, Amanda, Daniel, Maggie etc. They have all guided me and nurtured me back to health with their incredible intuition, skill and compassion. My family…. especially my sister Sheri for her constant caregiving. My sister Lisa and my Mom and Dad and my extended family of in-laws, aunts, uncles and cousins. My dear “penguin cap“ team of Sheri, Diana and Caroline. So many notes and gifts and calls. So many Incredible people. So much love. It takes a village.
Below, I am including a piece of writing that I recently put together after being inspired by a Ted Talk on “end of life“ needs. There have been continuing texts and emails going back and forth with my Uncle Bill an amazing retired internist who just lost his struggle with Lymphoma and has been one of my confidants and protectors. It all started when he and I were expressing our frustration about the chemotherapy infusion experience and the lack of comfort and beauty in the hospital infusion centers around the country. We have often brainstormed… how much privacy vs community and aesthetic surroundings does one want/need when going through such a necessary but humiliating infusion process? Why can’t you have more than one person with you at a time during the infusion? Why is everything plastic, etc.
As an interior designer and spending so much time in hospitals over the last 2.5 years, I believe that we have a monumental task to make the patient experience more beautifully designed… physically, mentally and spiritually. I wrote this after thinking about and praying for Uncle Bill and pondering my brother Bill’s last week of life. I had all of this in mind when jotting down the following thoughts. I’m wondering how I can help. It is a very rough draft of raw thoughts.
For living and especially for dying, we need to sense, feel, touch, smell, hear and see beauty and unconditional love and close community around us. We want to feel trust, compassion and respect with our closest friends and family. We also need simple sensual experiences like touch, sight, smell, reflection on what matters. Bringing nature into view. We need simple pleasures like the feeling of a snowball melting in your hand, a soft hug, your dog at the foot of your bed, seeing into someone’s eyes, seeing the beginnings of an intricate flower bloom or a view of a magnificent garden or distant mountain. We need to be able to draw or write a line or two of expression, smell a fresh cookie baking, hear a laugh, beautiful music or merely your breathing in a dampened quiet room… or the voice or note from someone special. Each new morning reflecting on all the goodness that you are learning in this life while also putting to rest the challenges. Our lives are full of little pieces of Grace that add up to a full life of people, places, things and above all love…knowing that there is a higher power who cares for you and will take you into another heavenly realm one day. Knowing that when you fall asleep, God will be awake and will answer all of your prayers.
At my last appointment, I got word that my blood work looks great and that I can get off of all immunosuppressants! No more prograph, magnesium or Bactrim antibiotic! I am completely thrilled that I don’t need to come back to the clinic for two months!! Thank you all for your part in lifting me up in prayer and positive thoughts! I could not have done this without such positivity surrounding me! Only 3 months until I get to reach out to my donor!!! Love, Love, Love! Love for love:)
As I reflect, here are some fun pictures…