Y’all, I can’t. When he explained another surgery was on the horizon, I felt that air of hope deflate within me. My interior thoughts were “you have got to be kidding me” to “okay, at least we know what it is”.

It was actually Mama Bear’s idea to schedule this appointment. I’m not sure if she was tired of the middle of the night water running from baths trying to get relief or she too was fed up with doctors who kept telling us “let’s watch and see”.

Either way, she convinced me to call and get an appointment: I’d seen this doctor before and he had the nicest bedside manner that I’ve ever seen. And I see a lot of doctors. If he didn’t know the answer, he’d know where to send me to next.

And so we went. And waited an hour to see him. And then he was in the room all of 10 minutes.

When we arrived, they took me to get x-rays right there in the office. They wanted some fresh imaging for the doctor. At this point, I might glow in the dark from all the radiation and imaging I’ve had done in my life.

He came into the room, “this is 100% prolonged steroid use.”

Me: uh; what is?

Dr: you have AVN (or avascular necrosis). Jump up on the table and I’ll ultrasound you.

Me: I’d heard the term before but wasn’t sure Mom had. Trying to gather my thoughts, I laid on the exam table and he ultrasounded my hip. he said terms I didn’t know to his scribe and he explained that I had dead bone tissue due to lack of blood supply, associated with prolonged steroid use. Bad in the right hip and not as bad, but still bad, in the left.

I always knew it was a reality the longer I was on steroids, but didn’t think I had to worry. The pain had started about a year and a half ago, while I was still on steroids. I must have tweaked something, I thought. Yet the pain got worse and worse and reached its peak this spring. Looking back we were weaning off steroids, which is a powerful pain killer this past spring. So as the dose came down on the steroids, it only made sense the pain had gotten worse. I complained to my transplant team and PCP and it was always “let’s keep an eye on it” or we have to wean you off steroids since you’ve been on them so long.

We were talking about bringing in pain management but Mom kept saying, “what are we treating”..so she convinced me to see ortho.

I went because I was sick of being in pain and being gaslight, “you’ve been through worse, you’ll be fine”, “your 20 pain pills are lasting two months, let’s make them last longer”, to “we might just have to bandaid this”.

Bandaid what? The truth of the matter is there were days I couldn’t get out of bed, I didn’t sleep more nights than I did sleep, because of the pain, just getting out of a chair or going up the stairs once did me in, And venturing out on a “good day” meant I spent two days in bed because it hurt too much to move.

Mom, my dutiful lidocaine application nurse, and I were done. So when we saw ortho and he diagnosed AVN, I knew immediately what was next, a hip replacement.

Yes, hip(s) replacement(s) in my 30s. While not immediately, in the near future. We already know a kidney transplant is in the distance. I was expecting to just maintain status quo medically until then. Another surgery? Ugh.

Truth be told, I expected the diagnosis and treatment plan. But I was still very upset. Upset at my team of medical professionals, those that they allowed me to continue on steroids, knowing the risk. That it took me saying, I’m weaning off steroids, for it to happen. And ultimately, the very medication that helped my body not reject my new heart, was the same one that destroyed another part.

I wish people knew that with transplant we accept one risk to live, only to also accept a ton more risks to our lives and bodies. That’s why I share so much of my journey. It isn’t the transplant and recovery that’s the worst part, albeit the hardest.

It’s the lives and risks we take everyday after. Medications that nurses wear two sets of gloves for, because they are that toxic, we take every 12 hours. Suncreen people casually put on because they want a tan, becomes a necessity to lessen not remove our chance of skin cancer. Rules we follow, so the risk we take are mitigated, but never fully gone. Our lives are forever changed.

A young adult recently posted in a transplant support group, I’m struggling with my emotions since my transplant. I couldn’t type fast enough, you can be eternally grateful for the gift of your new heart, but also grieve what is, what was and what was supposed to be. I hope it brought her some peace.

And I too, couldn’t share this the past two weeks, because I too had to grieve another part of my body that has failed. I’m just barely 36, and have more scars than I can count. Nothing about this is normal. And there is more coming.

I wanted to be the girl who walked her two pups every morning, the girl who would go out shopping to find herself a deal on budget, the girl who’d go out with friends and meet Prince Charming along the way. And that isn’t my reality right now, and it’s okay to grieve that. For the transplant followers, it’s okay to grieve where you are at the moment versus where you wanted to be. Just remember you are 100% on getting through your worst days.

And for those of you who have followed since the days this blog was started, I hope you continue along. Triumphs over each challenge that comes our way, is when Hope Wins.