To say that I haven’t posted here in a long time is an understatement. I’ve been focusing on sharing my journey in short form on my Instagram and TikTok channels. But, with all I am currently going through with my upcoming kidney transplant I thought it was about time I hop back on here and share all that has happened over the past few years. 

It started with COVID. In 2022 I had COVID for the first time. At my dialysis clinic if you have an active COVID infection you are placed on the 4th time shift in the evening. My regular treatment schedule started in the late morning. 

This new evening shift was one I had never done before. To my surprise, I absolutely loved it. It gave me my days back! Normally when I would do dialysis in the morning. I would return home in mid-afternoon, nap immediately afterwards, then just be up for a few hours before I went back to bed. Each day essentially eaten up by dialysis. 

By switching to a later shift I could have my entire day available to me. Sleep in and do as I pleased until heading to treatment. By the time I would return home it was time to go to bed anyway. I decided then to make a change and shift my dialysis treatments to the evening. 

With the change in time came a change in the Nephrologist (the kidney specialist) who was overseeing my care. 

Turns out this was the best thing to happen to me. 

My previous Nephrologist had been meh. She was just okay and I wasn’t really pleased with her. So when I heard the doctor that saw the evening patients was amazing I was cautiously optimistic. Then I met him and my whole life changed. 

I will say, aside from my very first Nephrologist who I saw over 25 years ago and who initially diagnosed me, he was my new favorite doctor. 

When we discussed my history and options of kidney transplant I told him all about how I had no options left. Over the years I had met with multiple specialists of Focal Segmental Glomerulosclerosis (FSGS), the rare kidney disease I have, and they all said I wouldn’t be a good candidate for another (this would be my third) kidney transplant. 

I had even recently been referred to the UC San Diego transplant center and they would not even meet with me. I was able to have an evaluation at Scripps, but they ultimately denied me. So I was SURE SURE that another kidney transplant just was not in the cards for me. 

After discussing this in length with my new doctor (Dr. N), he asked if I’d ever tried the outstanding medical centers, located just two hours north of San Diego, in Los Angeles. He had previously worked at Cedars-Sinai, a world renowned medical center, and offered up the idea that I try for evaluation there.

Cedars-Sinai is a center that does outstanding work in the field of kidney transplantation. They are cutting edge and always trying new drugs, treatments, and therapies. 

I literally had nothing to lose, and no other options, so I said yes. Yes, I will put myself out there once again and try to get accepted for a THIRD kidney transplant!

By the end of 2022 we were underway. First thing was I had to have a TON of different diagnostic tests done to ensure I was healthy enough to even have this surgery. Once those were completed, my case had to go through an initial evaluation through my insurer to approve my visit to the transplant clinic at Cedars-Sinai. Upon that approval, I was scheduled to meet the doctors and entire transplant team at Cedars-Sinai. That appointment was scheduled a few months out. So, by the time I was initially seen by the Cedars-Sinai team it had been almost a year since the initial idea was floated. 

After the evaluation where the doctors actually sounded optimistic about approving me- which was a HUGE SHOCK to me- it would be over 6 months until I was actually approved. 

By late 2023 I had to repeat many of the tests I had already done because they were already outdated. I had to do additional testing and contact the center multiple times to make sure they had everything they could possibly need. 

It was, finally, in the Spring of 2024 that I received that news that I WAS APPROVED!! To say I was stunned is a major understatement. I had truly thought that this was NEVER EVER going to happen. NEVER going to be possible. 

So, there I was, finally approved, but there was still such a long road ahead. Because FSGS recurred in both of my previously transplanted kidneys (in 2003 and 2005) Cedars-Sinai wanted to take a new approach to this transplant. They were coming up with a plan that would help prevent recurrence again. Or at least try. 

Their team of specialists came together and the plan was set. 

I would receive the treatments of:

Plasmapheresis,

IVIG,

Rituximab, and

Daratumumab.

Each of these were to work in unison to desensitize my body to the FSGS. The goal being that when the new kidney is transplanted the disease will be weakened and not come back to attack and kill the kidney as it had previously done twice before. 

After having everything approved and set up I was set to start treatments in October 2024!

Then, as my time was coming up to start treatments, I had a routine visit to the Dermatologist and was diagnosed with skincare cancer (AGAIN!). I’ve been having skin cancer spots pop up since just after my first kidney transplant in 2003. So, while this was nothing I wasn’t familiar with, it was just awful timing. I would have to postpone the start of treatments, have the skin cancers removed and be totally healed up before we could even reschedule. 

Thanks to some fast healing we were able to reschedule and I was set up to start treatments in December! 

Throughout December 2024 and January 2025 I was traveling between the Kaiser in Los Angeles, the Kaiser in San Diego, and Cedars-Sinai in Los Angeles to receive my treatments. 

It was February 1st of 2025 that I was finally done! 

From the time of my approval for transplant, I had been put on the kidney transplant waiting list but with a ‘HOLD’. This essentially means that I’m gaining time but won’t be called for a kidney until that hold is lifted. 

So, as soon as I was finished with treatment the hold was lifted. 

February 4th, 2025, I was ACTIVATED. 

While the wait time in California for an O blood type is normally 10 years, once you are put on the kidney transplant list they back-date your start time to the day you started dialysis. For me that day was in June 2006! 

So, by the time I was activated I had OVER 18 YEARS of wait time accumulated. 

We knew this meant I would move to the top of the list and receive a call soon. 

I was nervous, anxious, thrilled, afraid, scared, and a multitude of other emotions. I packed my go-bag, made sure I had someone lined up to take care of the cats when the time came, and stayed on top of laundry and dishes so I could go at a moment’s notice. 

Then, the call came. 

Just before 6am on February 17, 2025 I was woken up by a call from the on-call nurse who had the news that a kidney was available for me.

Did I want to accept it? Let’s say that was the easiest YES ever. 

I got all my things together, showered, kissed the kitties goodbye, and headed out. 

The plan was to meet my mom in Orange County, where she lives, and is almost halfway to Los Angeles from San Diego. 

We met up, got on the road, and were off on a new adventure. 

Being a holiday, there was virtually no traffic (almost unheard of in Los Angeles) on our way. 

We made great time to Cedars-Sinai. We were checked in and settled in my hospital room by 10:30am. 

That’s when the real craziness started. 

It was a flurry of phone calls from different departments at Cedars-Sinai. 

Doctors popping in to discuss the surgery and plan for the day. 

Nurses starting IV’s, drawing blood, and getting me ready for surgery. 

I received an EKG, chest x-ray, ultrasound of the veins in my abdominal area, even a full dialysis treatment. 

The surgeons said they expected the donor kidney to arrive at the hospital around 1pm. At that point they would evaluate it and confirm if it was a beautiful, perfect kidney, for me.

So, when the clock was approaching 3pm, and I hadn’t heard anything, I was a little worried. No word just didn’t seem good. But I was holding out hope. 

It was just taking some time. 

They were being thorough. 

My time was close. 

When I saw the surgeons outside my room chatting I wasn’t sure what to expect. 

Unfortunately, it was the worst news. 

There had been an issue with procurement of the kidney and it wasn’t in good condition. 

It was not viable for transplant. 

Surgery was cancelled. 

I was being discharged and sent home. 

I was stunned. 

My mom and I just looked at each other. Both of us were just in shock. That was not what we were expecting. 

Our hopes had been so high. 

We were so close. 

After such a long road to get here we were at the finish line. We were right there. And just like that it was snatched away from us. 

This journey has been so long, so hard, so taxing, not only physically but emotionally as well. Managing my mental health has almost been harder than my physical health. 

So when that news arrived, I just went numb. I couldn’t process it. We had shared the good news that I was about to get my kidney with friends and family and now we had to tell all of them that it was off. I was inundated with texts and calls from everyone sharing how disappointed and saddened they were. 

I had to hide my phone away. 

I couldn’t look at it. 

I couldn’t handle talking about it. 

When we returned to my parents’ place I went straight to bed and slept. When I woke up they fed me and I was off. 

Back to San Diego. 

Back to the kitties. 

Back to dialysis. 

Back to my old life that I was ready to leave behind. 

I immediately fell back asleep upon returning home. It wasn’t until I woke up on Tuesday that the tears started. And they kept coming. All day. I was emotionally spent. I had gone from the highest high to the lowest low in a manner of half a day. I couldn’t hold them back.

There were just SO. MANY. TEARS.

By that night I was exhausted. Soo exhausted I slept through most of Wednesday. I would have slept all day had I not needed to get myself up and back to dialysis. Back to the clinic that just a day earlier I had thought I would never have to go back to. 

It is now Monday, one week since I got that call. I’m still exhausted, physically and mentally. But, I’m getting back to normal. 

I still have my bag packed. 

I’m still staying on top of the housework. 

I’m still gassed up and ready to hit the road at a moment’s notice. 

I am placing my faith in the universe that the right kidney will come at the right time. I have fought my way this far. This is just another obstacle. Another side track on this road to transplant. 

I’ve managed to jump over every hurdle in my way. This is just one more. Another chapter in the book. 

I’m ready to turn the page. Move forward. And get this damn kidney. 

Until then, I will snuggle the cats a little closer, lean on my support system to hold me up, and keep putting one foot in front of the other.