I don’t mean to whine, but daily dialysis can get any girl down. As if what happened wasn’t enough, I have to deal with kidney failure too?! It’s all a little surreal to be honest. There’s still a small part of me that expects to wake up and find that this nightmare is over. But alas, it’s real-there’s the wheelchair and here’s Louis; my trusted nurse.
Lees? I hear a faint voice pierce through the black of night. It’s 5:45am - the house is silent. It’s time to start. Amazing how life changes. Nine months ago I would have been up at five and out the door by five-fifteen am, heading to workout. It was a religion for me; Equinox, Exceed, Flywheel. I didn’t skip a day for eighteen years! No one was more dedicated than me. Then home by a quarter to seven to make lunches, pack back packs, and sneak in some time to read the paper and scarf down breakfast before all the boys get up. It’s still silent, and I can grab a shower before the chaos begins. At the time, the boys were four and six; two challenging, but adorable ages. They were busy, active kids, with school, after school classes, and full playdate schedules. My husband, Steve, (of nearly fourteen years), and I own and operate a preschool and children’s enrichment center just down the block; Reade Street Prep. Reade Street, Tribeca-that’s where it all happens for us. Our home, our business, our older son’s school, our friends, our lives. Super centric-perfect for a type A like me. I could take both boys to school, work all day at the preschool, pick up my first grader and shuffle him around to his classes and friends, go back to work, head home with the little one around five, cook or order dinner, do homework, and get the boys down. That was the daily grind. Weekends were packed with classes and practices and date nights with friends. The calendar was full. It was mid-June and end of year parties were in full swing. We were to leave for our summer out west in two weeks, right after a quick trip to London for our dear friend’s wedding. And then it happened. I didn’t feel well when I went to bed Monday. I was achy and tired and run down. I decided to take the morning, maybe even the day to rest. “Listen to your body”, Steve would say. For once, I did. By mid afternoon I couldn’t walk. My hands and feet felt like they were on fire. I called Steve and asked that he take me to urgent care. I couldn’t even walk the block to get there; something was wrong. After determining that I had strep throat and the flu, the urgent care doctor was convinced I was overreacting and dramatic and prescribed me some Valium, telling me to sleep it off. Fuck that. I knew better. I climbed into the back of the ambulance, still screaming in pain. The ride was quick, but it seemed like a lifetime. It was ME in the ambulance, sirens blaring, racing through traffic. What was happening?! I had to show up for the first-grade party in an hour. I had organized the whole event! I had the card and the present. I was class mom! We had to move fast. Steve held my hand in the waiting room, as my world, and my body were crashing. The curtain closed around me when they got back my bloodwork. The whole team of doctors would emerge around my stretcher. And then, I blacked out. Waking up out of a coma is a slow and confusing process. I quickly learned what had happened; that the bacteria that was in my blood caused me to go into septic shock, cutting off the blood supply to my extremities and burning my body. I was on some sort of machine, it felt like a conveyer belt, all wrapped up in something like a shroud of sorts. The lights were bright. My sister was, gently as she could, delivering all the key facts to me. “Lees, don’t try to talk. You’re in the hospital. You have a breathing tube and a feeding tube in your throat. You’re okay. You contracted some crazy bacterial infection. You’ve been here for weeks.” What the fk? I What? I’m where? What happened to me? Where are my boys?
Later I would learn that the sepsis I suffered was so severe that it caused my hands and feet to become necrotic; black, burned, bloodless, and lifeless. I would need to have all four extremities amputated. I was way too drugged to really comprehend this at the time. It was all way too much to process and I was on every opiate under the sun. Five surgeries and countless other lesser mini-traumas later, I was ready to go home. It had been nearly four months. It was time to learn how to live my new life on the outside. I hear the churn of the dialysis machine. Beeping and gurgling, forcing the cold blood through my body. I shiver under all my covers, wrapped in tubes filled with toxic blood and clean blood, and I fight to fall back asleep and forget this for a while. About an hour and a half into treatment, I start to yawn incessantly. Here we go again. My blood pressure is dropping quickly. I peek out from my covers to look for Louis, but he’s already over me. He calms me as I squirm and tells me we’re gonna give you back some fluid. He messes with the machine for a few minutes and I start to feel better. My heart settles, my breathing returns to normal, and my body relaxes. I’m okay. Twenty more minutes…
I need a kidney. From a donor with blood type O. Sounds simple enough, as that’s like 40% of the population, but it’s not. Nothing is these days. I’ve learned how to walk using my prosthetics. I walk well; I’m getting faster. I’m going to be fast. I’m going to run and move like I used to. I’m learning how to use my myoelectric hands too. I typed this all myself. It’s all a process. I’m back at work between therapies, back out with friends and attending dinners and parties and parent/teacher conferences. I’m determined and unstoppable. Terrified and isolated, insecure and suddenly dependent, but focused on my recovery. The kidney transplant, however, is out of my control. I’m desperate for a donor; a live donor. This will improve my life significantly; no more dialysis, which sucks all your energy out. It’s worrying about everything you drink; volume control. It’s days when I can’t leave my house because my prosthetics won’t fit. It’s cutting out all the food I used to love; cheese, avocado, tomato, nuts, spinach, yogurt, potatoes, to name a few things. And alcohol!!! Damn, I was a great drinker. Dialysis slows you down and consumes you. I can’t travel. I can’t run away. I’m still on life support.
So, I need to spread the word; broaden my campaign. I hope that you will help me by reading my story and forwarding it to everyone you know. I’m hopeful this will work. I can be sustained like this for a couple of more years, but this is no way to live, and frankly, the statistics aren’t good. My family needs me. I need a chance. I need a healthy, happy donor to whom I will owe my life. The next chapter is waiting… For information on how to help: Email [email protected] / Call 718.431.9831 x209 For more of my story or to make a charitable donation for Medical Expenses: https://helphopelive.org/ca...
Mar 06, 2017
UPDATE FROM ILYSA:
I'm writing to update you all on what's happening with my kidney transplant...
The process is confusing and difficult. Information is not readily given out and HIPPA makes it impossible to self navigate. I'm sad to report that I have not yet found a match. Many of you generously filled out questionnaires and may have been called, tested, both, or neither. The truth is that I do not know. I have learned that I am DEPENDING ON YOU to update ME.
These are the facts: 1-The transplant team explained that they are not at liberty to tell us who or if anyone has been tested.
So I plead with anyone who has been tested, wants to test, or has already been vetted, Please keep us in the loop as to where you are in the process. If you have been tested and haven't heard results call Gretchen 212 305 2239(the donor coordinator) or e mail her [email protected]
2- If you have sent in your questionnaire and haven't been contacted please let us know or let Gretchen know 212 305 2239 [email protected]
3 - Results are only shared with the donor, NOT with ME. If the donor is not a direct match, they are also informed that they may be a donor for someone else, and that they can be part of a chain for multiple transplants. The team will ONLY leave one voicemail per person. They will not call more than once.
4 - It will be the responsibility of the donors to inform us directly if they are willing to donate after they learn if they are a match.
I am so grateful for your help and support....I encourage anyone who is interested to please keep direct communication open with me as its the only way I will know what's going on. LINK FOR POTENTIAL DONORS: