TRANSPLANT JOURNEY: My History with Kidney Disease
Dear reader: I’ve decided to blog about my kidney transplant journey on this site as a way to be educational, informative and (I hope!) engaging by bringing a face to one of the 114,000 people waiting for an organ transplant in the US today. I hope you enjoy my story as it unfolds.
It’s been my observation that every lung transplant puts you on the way to needing a kidney transplant. It just takes some people longer to get there than others.
My kidneys were “normal” before my double lung transplant in 2014. I put normal in quotation marks because kidneys don’t show diminished values until they are well on their way to becoming a problem. So while my lab values may have been in the normal range, they had already lived through 35 years of kidney-stressing diabetes and a boatload of toxic IV antibiotics.
In the cystic fibrosis community from which I came, the number to watch with respect to your health was always your fev1 – the amount of forced air you’re able to breath out in 1 second while performing lung function tests. If you met a new person with CF online, often times fev1’s would be exchanged to give each other a general idea of where they were at in terms of disease progression. Your close circle of friends would likely also be familiar with this number.
All of that changes after you receive a lung transplant. Everyone’s fev1s are ridiculously good! The numbers are so high that we don’t really even have a sense of what they mean anymore. Yay!
While there may be some conversations about your new lung volume (bragger!), especially very soon after lung transplant, the real number of focus for many of us (some sooner than others) becomes your creatinine (cree-AT-a-neen) – a blood level indicator of kidney health. Some people learn this real fast as people’s kidneys sometimes completely fail directly after transplant due to all the strain and medications. The lucky people, on the other end of the spectrum, can spend years blissfully unconcerned about their creatinine levels (though this in no way means there aren’t a range of other challenges to deal with).
It’s gettin’ hot in here!
I guess I place myself roughly in the middle of those two scenarios. My creatinine level was elevated right after transplant, never terribly high, but also not terribly low. During those first 2-3 years, my lab numbers rose slowly from the upper 1’s and into 2 and then the low 2s, where I’ve basically stayed since (going up = no bueno.)
In 2017, I asked to be referred to a nephrologist (kidney doctor) familiar with transplant patients. At my very first appointment I learned that I had stage IV kidney disease. Yikes! How high does this scale go, anyway?? The main thing my nephrologist helped me with was controlling my blood pressure. My blood pressure became high as soon as I started on anti-rejection medication (then, Prograf) and only kept creeping higher, it seemed. Oh, and the scale goes up to Stage 5, which is when you are in need of dialysis. It is my wish that this day never, ever, comes for me.
When I started seeing the kidney doctor, there was another number, much scarier to me, that became a big focus: GFR or glomerular filtration rate. This is a slightly more precise test of how well your kidneys are doing. At my first nephro appointment, I believe my GFR was about 25, which translates to 25% functioning. That is where I have basically stayed since then.
To put 25% of kidney function into perspective,
one may be listed for a kidney transplant at less than 20%,
Fast forward to 2020. While I’ve had some symptoms of kidney problems over the last few years, things definitely seemed to progress in the last year. My feet, ankles and legs began swelling more in size, more frequently, and wouldn’t go away by morning. I have swelling in my facial area which I HATE. I think I may have some in my abdominal area. My amount of needed sleep has been increasing to the point of if I have a big day, or a few even kinda busy days, I’m in need of hours of additional sleep. I probably also have less energy overall – I know that it’s been incredibly difficult to exercise – but I believe that has happened so gradually that it’s hard to tell for sure. And my lab values have gotten a little worse. Some higher, some lower, all no bueno!
Every nephrology appointment, as I was walk from my car in the parking garage at Duke South and into the abdominal transplant clinic, I wonder to myself if this will be the visit that the doctor will refer me to kidney transplant clinic. Man, I’ve really been lucky, skating by with this stage IV stuff checkup after checkup…will he think it’s time I go get checked out by transplant docs?
But a-ha! He never did say that!! Unfortunately, at my last appointment in May I realized that I no longer felt like I was “winning” at kidney disease, but rather like I had the wrong kidney doctor. I need a doctor to be proactive, forward thinking, on-the-ball as well as super open to collaboration with this Dr Laura. So I actually brought up the kidney transplant issue myself. Did he think it was a good idea? Yes, he said right away. You’re getting closer and closer to that time when listing would be possible.
So he referred me to have a kidney transplant evaluation, which happened on July 10, 2020. I had imagined that the evaluation day is where this blog post would begin, not end. I guess I underestimated the amount of backstory. Because, let me tell you, I’m still not finished with it! Meanwhile, if I do continue to see a non-transplant nephrologist, I’ve gotten a few really good recommendations.
Health and happiness,
Laura P Smith, Team Co-Manager
Double Lung Recipient, 2014
If you’re interested, I blogged extensively here about my lung transplant
*Disclaimer: I’m not a doctor, people, I just play one on the internet