Hello again!

It’s funny, but up until now I’ve been compartmentalizing my life into two main chapters: pre-transplant and post-transplant. Those two parts of my life are so drastically different, it’s not hard to separate those experiences and memories. Yes, for the most part, my personality, dreams, etc. haven’t changed, however, my outlook on everything around me and how I see people is night and day different. This week, I’ve been presented with a brand new, unexpected path that I need to categorize – I need another transplant.

It’s very sobering to be floating along thinking life is so good because I’ve been given this second chance, and believing that I was doing everything I could to make the best of it, when I get news that that time has ended. Bam. Just like that. Out of the blue. Now, reality is sinking in and I’ve put my “big girl” pants back on to face my next adventure.

Welcome Chapter 3. I was having some symptoms that were worrying me: feet were starting to swell again, I was getting crackling sounds in my lungs when I breathed, I had to sleep sitting up (b/c I couldn’t breathe otherwise), and I gained 15 pounds in two weeks! Not only that, but my creatinine numbers had been creeping up slowly, so my doctor said that he wanted to do a biopsy on Kirby (my transplanted kidney) just to make sure everything was ok. Turns out, they weren’t. What I didn’t know was the immunosuppressant meds I was taking to keep Kirby alive were also doing damage to it. I always thought that the meds kept Kirby in this protective little bubble so he stayed nice, plump, and healthy! Unfortunately, the meds cause scarring to the organ, and Kirby is now 50% scarred up and apparently on his “last leg” as the doctor put it. He said that is why most transplanted organs don’t have a super long lifeline. I seriously thought that if I did everything right and followed all the rules, Kirby would last as long as I did. Now I know that’s not always possible.

Add to this, the fact that he also found “abnormal cells” in the biopsy that could possibly point to Renal Cancer. So, he’s now looking into whether or not Kirby has kidney cancer. That sounds weird, but I keep mentally thinking it’s the kidney that might have cancer and not ME per se.

So, this can go one of two ways: If there is cancer, they will need to stop all immunosuppressant meds which will “kill off” the kidney, and they would need to remove the entire kidney as quickly as possible to get rid of any chance of the cancer spreading. This, of course, means I’d need to start dialysis immediately. If there is NO cancer, I can hold on to Kirby and we’ll try to squeeze out every last bit of him that we can until I get a new kidney. Either way, the end result is me having to get another transplant.

I have questions… and I definitely have thoughts! Why me…again? If there is a reason for everything, what is the reason this time? Why do some people get to keep their kidneys for 25+ years and I only got to keep mine for barely 10? Is this something I get to look forward to facing every 10-ish years?? While browsing through my Transplant groups in FB, I have to bite my tongue as I see other patients celebrating their 18th, 20th, etc. “kidneyversaries” and I feel bitter…and sad. I’ve been viewing Kirby as almost child-like and it almost feels as if I’m losing a child or pet. I’ve been taking care of “him” for almost 10 years and vice versa. I feel as if I’ve almost let “him” down, like I didn’t do enough to take care of “him”. I know that sounds crazy, but this is my blog and I can cry if I want to.

I have clearly restarted my blog so that I can keep everyone updated, and as I promised last time, I will make sure be transparent with all the good and bad “bits”. I’ve had a lot of people ask how they can help…right now, I simply ask for prayers. Please pray that I don’t have cancer. Please pray that I don’t have to go on dialysis again. Please pray that I am able to find another new healthy kidney quickly so I don’t have to have another drawn out experience like before. Lastly, please pray that I’m able to stay as positive and strong as possible to get me through this…again.

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Things I’m thankful for today:

1. Things could be so much worse! While staying at the hotel (when getting my biopsy), we were kind of stuck there for the week due to an ice storm. In the process of getting food to eat in our room, we forgot to bring a can opener. In the hotel lobby, a gentleman (who I thought was homeless) enthusiastically offered to lend me his. Apparently, he lived in that hotel because he had throat cancer and only had a few more months to live. He was alone, but thought of the hotel staff as family and while it looked like he wanted to be left alone by most of the hotel people, he was so kind to step forward and offer us help… even if only with a can opener. I thought of him all week and how sad he must be to be by himself going through what he was and it warmed my heart to see how the hotel staff had taken care of him.

2.  Kirby gave me an incredible 9 healthy years (and lots of fun memories to go with it)! I think of how my quality of life was so greatly improved with my first transplant, I can’t NOT be thankful for that!

3.  I am blessed to have an amazing support system. Seriously, I am so lucky to have all of you (my friends and family) to help me get through all of my ups and downs. I can’t imagine being able to step back on this train again without all of you there to help me through it! I love you!