A Near-Deadly Blood Disorder: How This Botanical Artist Recovered | Nicole Spadafora

Nicole graciously shares her terrifying experience with a rare blood disorder: thrombotic thrombocytopenic purpura, also known as TTP. Nicole’s interest in spiritual teachings and love of the outdoors helped her heal during this journey back to health.

Key Highlights:

• Hear how Nicole Spadafora initially thought her symptoms were related to stress and exhaustion but turned out to be much more dangerous.
• Hear about how Nicole coped with a nearly month-long recovery in the hospital after being diagnosed with TTP.
• Learn about the powerful impact plasma donations had on her recovery.
• Be inspired by Nicole’s floral artistry business and how nature can be a powerful healer.

Transcript:

Kerri Fitzgerald:
Hi, and welcome to another live filming of My Hero 360, the platform that brings you stories from individuals who ignite inspiration and drive positive change. Today, we are speaking with Nicole Spadafora. Nicole, it’s great to have you here.

Nicole is the owner of Spadaflora, which offers botanical artistry from locally foraged flowers and plants. Nicole, we’re looking forward to hearing your story.

Nicole Spadafora:
Thanks, Kerri. Thanks so much for having me on. I really admire what you’re doing with My Hero to bring awareness and positivity.

Kerri Fitzgerald:
Nicole, thank you for joining us today. To start, can you give a little background about yourself so our listeners can get to know you?

Nicole Spadafora:
Sure, yep. My name is Nicole Spadafora. I am 43 years old. I love to be outside.

Kerri Fitzgerald:
You said you love to be outside. We are here on a flower farm that you use this property to forage for greenery. Can you talk a little bit more about that and tell us about that work that you do?

Nicole Spadafora:
When I was 15 years old, my mom said it was time to get a job, and we went to a place called Sherrerd’s Florist and Clinton Nurseries, which is no longer in business. I was always super creative, but I never had a medium. I wasn’t a good drawer. I wasn’t a good painter, but loved and appreciated and was raised to appreciate nature through my dad.

Go to Sherrerd’s, start sweeping floors. One Christmas, they were short-staffed, and they showed me how to make a flower arrangement, and they said, “Can you do this?” I said, “I’ll try.” I was halfway decent, I guess decent enough to get put in the line to start creating the arrangements, and it kind of just took off from there. I have to give credit to a lot of those women there. They took me under their wing. They were so kind and patient and showed me the ins and outs of floral design. Fell in love with flowers, and it became my medium.

Fast forward a couple of years, my aunt was getting married and I said, “I think I could do this,” so started my own business doing floral design mainly, and then fast-forward 20 years, it was always a dream of mine to also grow my own flowers. About 6 years ago, I was fortunate enough to be able to quit my full-time job and start foraging and farming full-time.

Kerri Fitzgerald:
Wow, that’s amazing. You started this business. It’s called Spadaflora. What are the kinds of clients that you kind of service with your arrangements?

Nicole Spadafora:
Right now, it has really taken off to be mostly wholesale, which I’m loving. It’s really neat because there are some floral designers in the industry now. There’s a big movement to be as sustainable as possible and to get as many local flowers as possible. The clients that I service mostly are designers who really believe in sustainable floristry.

Kerri Fitzgerald:
All right. Let’s talk about what you went through recently. You were diagnosed with thrombotic thrombocytopenic purpura. That’s a mouthful. TTP. But it’s a life-threatening blood disorder. When we spoke, you talked about how you had these symptoms, but you were kind of putting everything off as, “It’s stress. I’m working a lot. I’m tired.” I feel like that’s something a lot of people can probably relate to or have done, just kind of assume symptoms that they’re feeling are more benign than they are. But yours were very serious. Can you tell us a little bit more about that?

Nicole Spadafora:
Yeah, sure. It’s a little bit of a loaded question because I could take it back 3 years or maybe let’s say even forward to COVID time. Super stressful, right? Everyone’s freaking out. What’s going on? My dad gets really sick and passed away. There’s this time where we’re all banding together. We’re helping my mom. Both my grandparents passed away and my dad within a 12-month time period. Super stressful, not easy. Weirdly enough, that’s when the business started really taking off. The only thing I wanted to do was be in the woods. Then the foraging kind of completely took off, so kind of whirlwind dealing with the family, the loss, business.

Then you go… When I started experiencing the TTP symptoms, which I now know are TTP symptoms, I thought it was, I hit a wall. I thought I had just exhausted all of my reserves from dealing with the death and the business. Around December 15th of [2023], I remember I called a hard stop for my winter break. I said, “I just need a break.” Started sleeping a lot. Thought it was the winter blues. I thought, “Maybe I’m depressed.” I thought, “I’m just exhausted. My nervous system is shot.” All of these things, and that’s how it started.

Kerri Fitzgerald:
Tell us the story. How did you wind up in the hospital for almost a month?

Nicole Spadafora:
Like I said, I was around December 15th, I called the hard stop. Again, I was sleeping a lot. Oh, let me tell you this. During the winter months because of the line of work I’m in, I usually take a big break. I was home for this break. I was sleeping a lot. Again, I just kind of thought maybe it’s COVID. I was just with my niece who is sick. Maybe I have something from her. I just started sleeping a lot and not even realizing what was going on.

All in about… Oh, I started getting fevers every once in a while. Again, my body, when I get sick, it’s not uncommon for me to get a fever and have no other symptoms. That’s how my body interprets sickness, I guess. Got a fever. A couple days later, it went away. We’re about, let’s say we’re mid-January now, early January. Get another fever, it goes away. Then I wake up one day and my heart’s racing, and I think, “Oh, maybe it’s just anxiety,” right? I have a fever. Then the next day, wake up and my lower back hurts, right? A couple days prior, I was pulling vines, so I thought, “Oh, I haven’t been working for a month. I must be out of shape. Maybe I just tweaked my back a little,” right?

Kerri Fitzgerald:
Right. You’re rationalizing everything.

Nicole Spadafora:
Exactly. I’ve got a fever, my heart’s racing, my back hurts, right? Next day I wake up and let’s say my urine is dark, right, and I think, “Oh, my back hurts. Maybe I have a UTI or a kidney infection.”

Kerri Fitzgerald:
Kidney stone.

Nicole Spadafora:
Kidney stone, correct. But I think that’s strange. I’ve never had one of these before. Okay, maybe that’s it, right? This is all in a solid time period, a solid week. I’m experiencing these things. Next day I wake up and I’m sitting in my kitchen, I’m looking at my phone, and I can’t focus. At that point, I started Googling my symptoms.

Kerri Fitzgerald:
A lot of people do.

Nicole Spadafora:
Right, right. Yeah. I’m Googling my symptoms, and I usually don’t do that. I’m totally not an alarmist, but I was like, “Okay, well, this is a little strange.” I’m Googling all this stuff and I come up with it’s sepsis, which is pretty bad. I’ll fast-forward in a little bit, but it wasn’t that far away, right?

I have a dentist appointment and my pipes end up freezing at my house. I call my mom. I said, “Mom, can I come down and shower at your place? I have to go to the dentist.” I walked down there and she says, “Have you been feeling okay mentally? I haven’t heard from you in a while.” I get a little winter bluesish sometimes and I can isolate. But I said, “Yeah.” I said, “Mentally, I’m fine.” I said, “Physically, there’s something up.” I get in the shower. In the shower, I can barely stand.

Get out of the shower, and I say to my mom, I say, “You know what? I don’t think I’m going to go to the dentist. I think I need to cancel. Can I lay on your couch for a little bit?” She was going out to run some errands. I said, “Can you get me a COVID test and a test for a UTI, UTI test?” Then we took my temperature too, and I think I had a 102 fever.

I lay on the couch, she goes out, she comes back, brings the test, and I stand up. I get up from my nap, and I’m trying to do the test, open the box, and my mom’s trying to help me. I’m trying to say to her, “Put the tube in the hole,” something like that, and I can’t find the words. I can’t find the words. I can’t speak the words. The craziest thing was I wasn’t freaking out. It was so interesting. I was almost hovering above myself observing it, going, “Wow, this is crazy.”

I’ve never experienced this before. That lasts for about, I don’t know, 5, 10 minutes. Finally can get the words out. Maybe it wasn’t 5 or 10 minutes. Maybe it was like 2 or 3. Finally can get the words out. My mom’s like, “Are you okay?” I said, “Mom,” I said, “I think there’s something extremely wrong with me. We need to go to the doctors.” She said, “Urgent care?” I said, “No, ER.” I looked at her and I said, “You might think I’m crazy, but I think I’m dying.”

She’s very calm. She didn’t freak out, thank God. She said, “Okay, okay. Let me just get dressed.” We get in the car and she looks at me and my eyes were completely yellow.

I said, “Do you think I’m dying?” She said, “No.” She gave me some reason to make me feel better, which did make me feel better. We go to the hospital and we walk in, and I remember knowing I was very sick. I have no idea how I knew this, but I was just like, “I know I’m dying.” I remember walking to the hospital and I was like, these people, the hospital people, must hear all the time, “I’m dying, something’s wrong with the me.” But I knew there was. I said, “All right.” I said to myself, “How am I going to convince these people, the nurses, the intake, that something is seriously wrong?” I remember being super measured. I said, “Okay, Nicole, you have to calmly talk with them.” I said, “Please check my chart. I haven’t been in the hospital in 8 years.” I said, “It might sound crazy, but I’m pretty sure I’m dying. Please believe me.”

Kerri Fitzgerald:
That’s so scary.

Nicole Spadafora:
Whether they did or not, I don’t know, but I was like, “I got to fight for myself.”

Kerri Fitzgerald:
What ultimately led to the diagnosis?

Nicole Spadafora:
The wonderful, shout-out to Dr. Mehta at Hunterdon Medical Center, the ER doctor. Very cool man. They started drawing blood, all kinds of blood. I was there for, I don’t know, maybe an hour and a half, and they kept taking different tests.

Dr. Mehta came in and he said, “I’m really glad you came in. You are correct. You’re in some serious trouble.” He was a straight shooter, which I was happy about with a sense of humor, so that was really nice. He said, “I believe you have TTP. I’m going to call the oncology team down to confer.”

Now, this is very interesting. I don’t know if I told you this when we talked. The oncology team who came down, the one doctor, Jason, who is a PA, he was the one who diagnosed my dad with this autoimmune disease when my dad was suffering with cancer. He tremendously helped my dad.

I just thought that was like, “What? Out of all the PAs?” I said, “Oh, okay.” That was cool. They conferred. They say, “Yes, you have TTP.” Then what ultimately led to the diagnosis was my hemoglobin was at a 4. For female adults, it’s supposed to be, I believe, 12 to 15.

My platelets were at 12,000, and they’re supposed to be, I believe, over 240,000 or 200,000. My bilirubin was all whacked out. Yeah, that’s what led to the diagnosis.

Kerri Fitzgerald:
Wow. Well, it’s an important lesson to listen to your body, right, and advocate for yourself. You said that kind of when you went into the ER, making sure to advocate and voice your concerns.

When we talked previously, you mentioned you had all kinds of treatment, but you had plasma treatment. You said how grateful you are for the people who donate plasma, which I think is really important to kind of call out and talk about the importance of that so people know what a difference it makes.

Nicole Spadafora:
Yeah, yeah. It does make such a difference. I was given 136 bags of plasma. I had 17 plasmapheresis treatments. I would look at that plasma and I would say prayers to that plasma as it was going into my body and wonder who the people were who donated. It is so important. I believe… Now, you guys know better than me… I believe it was in the early 2000s or maybe 2020, very recently, that the treatment for TTP, one of the ones that are successful is plasmapheresis and steroids, and I think we talked about it, the rituximab.

It wasn’t until very recently that they realized that this combo saved lives, but without that plasmapheresis treatment, the other 2 are really not effective. Yeah, I almost got a tattoo with 136. I would encourage anyone to donate blood and plasma if they can.

Kerri Fitzgerald:
Absolutely. You also talked about how the nurses were such an important part of your care team.

Nicole Spadafora:
I just made friends with everyone. Nurse Jackie was pregnant, and she was like, “You’re 1 of the only 2 people who know,” because I was safe. The actual nurse team who performed the plasmapheresis, they were my angels. There were 3 of them. I mean, I saw them every day, sometimes twice a day. They were like angels. They were my saviors. They would come down and each plasmapheresis was 4 hours. Four-plus hours. You’d have to lay there with tubes and whatnot, and you couldn’t really move.

Kerri Fitzgerald:
Would they stay and keep you company during it?

Nicole Spadafora:
It’s a huge process. You’ve got a port in your neck and you’ve got a bunch of tubes and your blood’s coming out and your red blood cells, your platelets, and I forget, something else. Then it’s going through the centrifuge machine, pulling the new plasma down, mixing it up and going back into your body. There’s several things that can go wrong. The nurses who perform the plasmapheresis have to have special training, and they are there constantly doing things to make sure that the patient is okay because your body can reject it. You can go into anaphylactic shock. There’s tons of things that can go wrong. We befriended each other.

Kerri Fitzgerald:
Yeah, yeah. You’re spending a lot of time together.

Nicole Spadafora:
They were wonderful.

Kerri Fitzgerald:
That’s incredible. When you have a good care team, it makes you feel, I’m sure, even better, or it makes you feel more secure, and you have people who really care about your outcome. Another thing when we talked initially, you mentioned how kind of from day 1 in the hospital, you decided, “I have to make the best of every day. I have to be positive. I have to be grateful.” I think you mentioned you talked the doctors into letting you go outside because nature is your solace. How did you come to that mindset? How did you keep yourself feeling grateful and as positive as possible going through all that?

Nicole Spadafora:
Kerri, I have to tell you, really, I was thinking about this today. It really wasn’t that hard for me. For me, it was legitimately a life or death situation, and that was the same way I was able to live life fully and gratefully in the hospital. For me, I mean, I guess we all have a choice, right, but there wasn’t a choice for me. Don’t get me wrong. There were some dark nights of the soul because I literally was on death’s door, and I had to confront that honestly for myself.

But okay, now this is interesting too, because a few months prior, remember I told you I was very tired. I stopped work in December. I was home and I was listening to a couple of spiritual teachers, Ram Dass, Wayne Dyer, Alan Watts, and I would just put on the podcast and I would bake. I was actually doing weird things now that I look back on it, like counting out my change for hours because trying to get my to focus.

Yeah. Anyway, when I was doing those things, I was listening to a lot of these spiritual teachers who I have listened to since I was exposed to them maybe in early college. But I think that being inundated or inundating myself with those teachers before going into the hospital, I think that was a miracle in and of itself because then when I went into the hospital, I was able to access what I had been hearing and learning and pondering for the last couple of months, which is all about truth, honesty, confronting where you are.

I’m not going to say it so eloquently right now, but I was like, “If I’m going to die, I am going to go out… This hospital room is going to be the world right now.” I had my mom bring in my Bluetooth speaker. I decorated the room. We had origami. I wasn’t allowed to have flowers. I snuck them in. I did. I convinced the doctors because for as sick as I was, they were amazed that I was not bedridden. They somewhat attribute that to being outside all the time, eating really well. But I’m constantly outside, that vitamin D, that fresh air, being around plants and flowers, being right next to all the photosynthesis that happens.

Kerri Fitzgerald:
Moving your body.

Nicole Spadafora:
Moving my body, right, constantly, all day, every day. I made sure that everything… Okay, so at the hospital when you’re in… I was in oncology, people will come, like the Buddhist person will come and say, “Would you like prayer?” The Christian will come and say, “Would you like prayer?” The non-denomination. Kerri, I said yes to all of them because I said, “Why not? Everything here can heal me.” Hospital food is… I’m shocked sometimes about the way hospital food is. Boston Hospital just put a garden rooftop to start taking the food from the garden for their… This food would come in and I would be like, I’d wave my hand over and I’d say, “You are the best thing I can eat for this body right now.” Everything I listened to, everything I read, every interaction that I had, all of the friends and family who came in, I knew it could either heal me or it had to be so important because I didn’t know what was next. I was making the best time in the hospital for myself, and I just put my mind to it.

Kerri Fitzgerald:
That’s an incredible mindset to have going through all that. It’s very inspiring. What has your road to recovery been since you got out of the hospital? You’re a small business owner, right? You own your own business. You were out of work for a little while. How was that? How did that affect you?

Nicole Spadafora:
I just had to get really comfortable with… Okay, again, almost died, so confronted my mortality, right? That puts things in perspective. It put things in perspective for me very quickly. Nothing else mattered to me except getting healthy and living. I just had to get really comfortable with the business was going to have to be what it was going to be, and it’s going to work out and it’s going to be fine no matter how it looks, no matter if I can do it. I had no idea what was ahead of me. Kerri, I had to be so present. I had to be so very present to get healthy that at that time, everything else wasn’t hard.

Kerri Fitzgerald:
Kind of puts into perspective things, right? I’d imagine.

Nicole Spadafora:
Yeah. Yeah. When I got out of the hospital, I couldn’t drive. I had to go back. In the beginning, I had to go back to the hospital every 3 days to get my blood checked. Again, couldn’t drive, was coming off of massive amounts of steroids. That’s interesting. I gained 35 pounds when I was on the steroids, right? I didn’t care about how I looked. It is what it is if it’s helping me be healthy. But that was interesting carrying around an extra 35 pounds, so resting, getting off the steroids, going back and forth to the hospital. That was a good month or 2.

The thing with TTP is there’s not really information on how it’s going to affect each person, so many different stories about what the road to recovery is like. Again, I just had to be very present and be… If I’m hungry, I’m going to eat. If I’m tired, I’m going to sleep, and the business will work itself out. That was for a while, that kind of mindset. I gradually got stronger, gradually, but I didn’t put pressure on myself.

Also, so fortunate to have very good friends and family. My support system and my network, I don’t know if I could have done it without the tremendous… The ladies, friends of mine started a meal train for me, so I had fresh food at my door. My sister-in-law would go food shopping for me. I just had all of this support…

Kerri Fitzgerald:
Makes a difference.

Nicole Spadafora:
Huge difference.

Kerri Fitzgerald:
Yeah. Then you also found out you had Lyme disease. What was that like?

Nicole Spadafora:
That was almost the straw that broke the camel’s back. To be completely honest with you, that wonderful mindset I had in the hospital, that was a little bit hard to find when the Lyme came. It’s just I had such little reserve left from going through that and from living with TTP that I actually thought I was going to be hospitalized for TTP again when they confirmed the Lyme. I went to go get blood work and I told the docs my blood work checked out, the TTP levels. My platelets and hemoglobin were great. I was telling them how I was feeling, which was very similar to how I was feeling when I got diagnosed with the TTP. They ran the blood work and found out it was Lyme.

The interesting thing is TTP can be brought on mostly by if you have hepatitis, I do not, if you have AIDS, I do not, and if you were pregnant, and I was not. There are other studies say that overload of Lyme pathogens can jumpstart the TTP. When I was in the hospital, they did treat me for Lyme back when I was experiencing the TTP. That’s interesting. Then no one can tell me if it came back or if it’s a flare. I was on antibiotics for 30 or 40 days and it wasn’t fun at all. But here we are. I’m not going to stop going outside. It’s my world. We got through it. We got through it.

Kerri Fitzgerald:
Yeah, absolutely. My Hero is all about recognizing people who have experienced hardship but not let it define them. How would you say that through this process, you’ve not allowed your challenges or setbacks to define you and really dictate how you live your life?

Nicole Spadafora:
Yeah. I mean, if anything, they’ve defined and dictated beautiful lessons. I think quite the opposite. It’s not limited me. I’m weirdly grateful for the experience. There are lessons that I learned during this that I don’t know if I would’ve learned had I not experienced this, and I mean, truly grateful. That’s so weird to say, but I think the gentleness in which I approach myself and others now, when I was faced, I’ll put it when I was faced with life or death, again, it puts things into perspective very quickly.

Kerri Fitzgerald:
We like to conclude our My Hero interviews by asking, what would you tell your younger self knowing what you know now?

Nicole Spadafora:
I would tell my younger self and the prior to TTP Nicole to no matter what, always trust your gut and your intuition; 99.9% of the time, it will not lead you astray. I believe that is not just something people… It’s not just some idea. I mean, I’ve experienced it. Trust your deep down gut. Listen. Try to listen as much as possible to yourself.

Kerri Fitzgerald:
Yeah, that’s really important words to live by. Well, Nicole, thank you so much for not only sharing your story, but sharing this beautiful flower farm and property with us. We know that your words and sentiment are really going to impact a lot of other people, and so thank you for sharing that with us today.

Nicole Spadafora:
Thank you. Thank you for being here and asking me the questions and listening, and I appreciate you too.