If I Could Say It All…

Dear family of my donor,

I am so grateful to have received a blessing of life.

Though I am quite aware that the price of my joy came from someone so very dear to you and your family, it has served to make this all the more meaningful.

Much like Selena Gomez, my cause of kidney loss was a result of an autoimmune disease – SLE or Lupus. It traveled to my kidneys and wrecked havoc on my body for 5 years, only 1 year after I graduated college.

I did my best to try to heal, but as a theatre arts & dance grad with a dream of pursuing musical theatre, and a passion for working with socially driven non-profits that focus on enhancing the lives of their local community – I didn’t have much money.

As well, I had ended a sore 8 year relationship that sent me across the county without my core friendships I made in college.

As a ward of the court since I was 2, I emancipated at 16. But because of my dedication to the world of the performing arts, I was able to get a Big Name Talent Agency to sponsor my college career.

But I didn’t have a family to fall back on.

So I was often on my own, lacking resources in my youth.

And I totally relied on the generosity of strangers, community programs to assist people in their time of need, and the uplifting nature of entertainment that is capable of touching our souls to make us laugh, to let us cry, to embrace sweet and loving moments, to excite in us what could be, to reveal to us what is, to encourage us to be brave and stand up for what we believe in, to show us that we are not alone.

But when I got sick, I was very, very ill. I couldn’t turn over in bed without crying from the pain of the weight of a bed sheet on my body. I had to crawl to the bathroom on hands and knees because my joints were so swollen I could barely walk.

After I went to see the doctor, the medications left me bed ridden or lying on the bathroom floor 18-20 hours a day.

My illness was awful.

When it took out my kidneys I hated that I had to go on dialysis.

But after one week of treatments, I was so grateful. All of my lupus symptoms melted away. I didn’t have to take that medication anymore and I felt so much better!

Though that was all great, still, I had to drive in early and wait for transport and wait for a chair, and follow their rules. I had to stick two needles in my arm and sit there for 4 hours. Treatment days lasted nearly 6 hours. When I had a couple of needle mishaps in-center, I learned I could potentially do it on my own at home.

So after 2 years in-center, I trained with my caregiver for 4 weeks and began home treatments. I had to stick myself but I could eat at home, my cat could sit on my lap. There were no alarms, no bustling, no other patients and all the complications that go with that. There was peace.

My caregiver played music, we watched TV, I took online courses and studied how to stay as healthy as I could given my circumstances.

We did this for 6 years until things got complicated last November. My access wasn’t taking the needles easily. The dialysis technicians who stick 40 patients a day, 4-7 times a week, for 10-30 years, weren’t able to help me.

The surgeons and doctors told me to do what the experienced technicians all told me they would not do.

I struggled throughout the whole holiday season.

In 2024, we celebrated my caregiver & partner’s father’s 90th birthday. There I was introduced to a pediatric kidney doctor who strongly encouraged me to get a transplant.

I had been told the whole time I was on dialysis. But those medications I was given for Lupus that left me in bed or in the bathroom for 18-20 hours a day? They were the very same medicines I would have to take for the life of the kidney. And so I had declined to accept any.

I even got on the list in 2018 and was called and told I was 3rd in line on the list for the next match so I should prepare. But I stepped out of line, because I thought the trade off would be awful again.

Talking to this doctor at this party, he said on dialysis I’m basically running at maximum strength of 20% of my ability – because dialysis is a depleting treatment. But if I were to get a kidney transplant, I could be running 60-80% of my ability.

Plus the transplant team would work with me to get the medication right so I wouldn’t have to suffer like I did with the lupus treatment.

That really hit home with me, because I wasn’t running on 20% I was running on 5-7% of my ability. And I wanted better.

So I signed up for a transplant. In January I was given an evaluation appointment for June 27th.

But I couldn’t wait any longer.

If I needed another surgery to live and the choice was surgery on my access or a transplant, then I wanted to get transplanted.

I decided I wanted my own independence day and I wanted to be transplanted by July 4th.

I spent the last nearly 15 years of this medical crisis learning how to be better in every aspect of my life – given my situation.

I learned about nutrition, biology, biohacking, modern medicine, alternative & complementary therapies, environmental toxins, psychology & how the mind affects the body, and so much more.

But mostly I learned that true health is more than just body & mind. It’s also your emotional & spiritual health that are just as important.

So I went on a healing journey improving myself.

That included rebuilding my support system & letting new love & family into my life.

Over time I rekindled with my birth mother’s family, I met my oldest matriarch before she died (my great grandmother’s sister) & all of her kin, I reconnected with friends, and found a man who has become the biggest part of my life and my heart – as my partner and caregiver.

Because of him and his family, my tribe and all the people we know collectively, I was able to fast track. Get all the testing necessary for evaluation, get evaluated sooner by mid-April and I got on the list by May 3rd.

So when I went to the Farmer’s Market to visit my friend and met my 90 year old “dad” and his grandson with my partner, the four of us hung out together eating baos and listening to the market’s band. Then went to get lunch with my love and I ordered vegan sushi thinking I should get used to not having raw fish (since it’s not allowed with transplant because raw food is dangerous when one’s immune system is suppressed). It was incredibly delicious!

Then we went for a half hour bike ride and I came home happy and exhausted.

And my phone rang just as I put it on the charger. It was the call. They had a great match for me. The 1st person they called was sick with a cold, so I was next in line.

And I still wasn’t certain so I called all my allies to have them weigh in with me. They had great faith in me. Whatever I decided to do, they would support me.

So I went in to prep & wait. And the next morning I was in surgery. And by noon, I was in my room. I woke up at 6pm and began my recovery.

And it has been BEAUTIFUL.

And I am so honored and so grateful.

This has been a very special gift. A wonderful team helps me every week to balance my health. My gift has been utterly life replenishing. All of my friends, family, neighbors are so very happy for me that they tear up and light up with joy and congratulations at the news. Simultaneously, eyes full of heart, they often tell me, “I am praying for their family, too”.

I have such a great support at home so I can relax as much as I need to during my recovery.

It’s just been the best dream.

And so I wanted to send my condolences during your time of grief.

While also letting you know your family has given me renewed life. And now I am looking towards developing a health & healing consulting business for disease management so that I can assist others during their time of deep need.

The most important aspect of a great many diseases in the modern world is preventative medicine and care.

Taking care of people BEFORE they get critically ill will reduce unnecessary hospital visits, allowing people to get seen quicker, reducing exorbitant health costs, reducing amount of medication needed, and allowing people to spend more time living life well.

And what can be better than that?