“I Am Somebody, But Part Of Me Is Somebody Else.”

Yesterday was an emotional day for me. I turned 40.  

Don’t get me wrong, I was happy.

It was heartening because back in 2009, when I started rapamune as a possible treatment for my two rare diseases, I wasn’t so sure I would make this milestone.

My body was intensely beat up from nearly back to back surgeries since 2004. Two of those were off instances that could have killed me had I not had those interventions.

Last year, my 39th birthday was spent on at least 6 liters of oxygen, creeping up towards 8 with little energy to do much of anything, much less celebrate. I was clinging to survival.  I was hopeful yet, hoping for the phone to ring.  Yet it was silent.

This year, I woke up & emailed a thank you note to my transplant team.   I wrote my donor family which was highly emotional for me, but I thought they’d appreciate knowing what this gift meant to me.

I concluded the day having some chocolate wine (I had clearance to have a glass or two) with my bestie, who has seen me through all the good & bad in my life & who I love like a sister.  She continues on this journey with me.

My six month mark is actually my other best friend’s birthday & it’s a milestone for him. We usually celebrate together anyway, but it’s nice to have that day be extra special.

It’s nice to share these significant moments with people who have been there through all the good & bad in my life.

My dad called me, which was poignant too.  He received a devastating diagnosis 2 days before my transplant, but is doing well with it.  It makes me immensely proud of him even though it’s tough being so far away.

My recovery is ticking along.

I still have stamina issues.

I have to get an MRI next week to check into some tumors in my kidneys from my TSC that look a bit irregular, but it could be nothing to worry about, I’ve had them before. Yet my risk now post transplant is slightly elevated so I’ll feel better after I have it done & over with.

Next month, I was supposed to go down to DC to testify at an FDA meeting on my rare diseases.

I realized a few weeks ago that I wasn’t ready & with this uncertainty with my kidneys I wasn’t up to traveling just yet.  I can still can record & share my testimony which makes me happy.

I look forward to the days where I can volunteer again.  It’s been a big part of my life for so long.

There are some opportunities with transplant & organ donation I will explore, but I’m waiting until around my 8 month or year mark to do that because I’m hoping to feel fully up to it then.   It’s great to have options though.

Prior to transplant & since at least 2015 when my diseases struck back hard & were actively trying to kill me again (in spite of treatment), I had little to no options.

I always had hope that transplant would help me.  It’s not a cure, but it is a gift that has been worth the leap of faith.

I’m not fully well, but my life & quality of life are infinitely better than they have been in years.

I’ve also been pleasantly surprised with my recovery.   Based on past history, I was expecting a much tougher climb.

I’m still not completely out of the woods with that, but I just take each day as it comes & do my best with it.

I’m one lucky woman.


— “From the bitterness of disease man learns the sweetness of health”  — Catalan Proverb




6 thoughts on ““I Am Somebody, But Part Of Me Is Somebody Else.”

  1. Nikki, strong message as always, and good to hear your progress. Until you’re out of the woods, I’ll keep KW4U!

    Liked by 1 person

  2. Happy birthday, Nikki ……. this is a VERY emotional journey …… and even worse if you are on ‘Roids! Be well!

    Liked by 1 person

  3. Much love, friend. You have done so well with keeping up with everything, even when you were just hanging on by your fingertips. Can’t wait to see what the next decade brings you!

    Liked by 1 person

  4. What an amazing story. You are one strong woman, and I hope in the future you receive the best life has to offer. [bsrealtalk.com]

    Liked by 1 person

  5. Absolutely beautiful blog post! Congratulations on reaching this mark && Happy Birthday too!

    Liked by 1 person

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