It's been seventy-eight days since the transplant.
I had clinic today.
I am not happy.
I had the second kidney biopsy and lymphocele drain last Wednesday (day seventy-three) and since then, I don't feel well. My left leg is swollen. My daytime urine output is low. My energy is lowered. My creatinine is creeping up.
Intuitively, I feel something is "off", whether caused by the biospy /lymphocele drain or not.
I'm not a medical doctor. I'm smart, but I'm not that kind of smart. All I can do when I go to clinic is to explain my symptoms. These complaints sometimes get recorded. Sometimes they are passed onto the nephrologist. Sometimes I am heard.
This is said with all due respect to my transplant team's efforts to keep me (me!) alive and as "well" as can be expected with co-morbidity issues.
But I really needed to be heard (in regards to this lymphocele) many weeks ago. During week two post-transplant, I started mentioning a "heavy" sensation above my graft. Having had two previous implanted kidneys, I knew that this feeling was not normal. Granted, there was a lot going on medical-wise after this transplant, and the team was swirling around me, desperately attempting to simply get some sort of stabilization. My mentioning of a heaviness above the kidney probably was not listed as important at the time.
But then, my left leg suddenly doubled in size. I now know that this is a tell-tale sign of a lymphocele. I didn't know then. But the doctors knew. Did they discuss it in rounds? Perhaps. But I was not notified of such talks.
It was only when my leg had swollen to ridiculous lengths (the skin on my foot was beginning to crack) alongside presenting myself at clinic as despondent, did one of the nephrologists take notice. He had compassion. He started the process of dealing with the lymphocele.
And then his three-week stint at clinic came to a close, and he left.*
Another doctor took his place, and the lymphocele "issue" was put on the back burner, so to speak. The kidney was the focus.**
I mentioned the lymphocele again. And again. Eventually a nephrostomy tube was inserted, but only when the kidney was displaying signs of inflammation, to which the second doctor admitted most likely was due to the lymphocele pressing against the kidney and ureter. Finally.
Then, during the lymphocele drain last Wednesday, the technician needled below the kidney to remove the lymphocele material. I mentioned that I thought that the lymphocele was actually above the kidney, as I had both felt it there and seen an image of it via a previous ultrasound.
He drained below the kidney.
A few days prior to today's appointment, I received a call from a nurse at Transplant clinic, informing me that my nephrostomy tube would be clamped off at today's visit. I was somewhat shocked by this, as, as mentioned, my lymphocele symptoms and urine output seemed worse since the biospy and drain a few days prior.
So in clinic today, I mentioned this to said nurse. The doctor was summoned. I explained about the lymphocele only being minimally drained from a spot below the kidney, and how the ultrasound technician did not even scan above the kidney at that time. I also mentioned that I was fairly certain that, during the first post-op ultrasound numerous weeks ago, the technician had located a sizable lymphocele above the kidney.
Once I said that I was no longer peeing (in the normal manner) did her eyebrows lift and my ultrasound file was read from the beginning of this transplant saga. Indeed, she saw the early reports stating that the lymphocele was showing above, behind and slightly below the kidney.
So now the action plan to schedule yet another ultrasound, to see what this lymphocele is up to, and how and where it is pressing against this kidney and ureter. And while I am glad that something is being done, and that I have perhaps finally been heard, I am tremendously frustrated by the merry-go-round of the medical system.
*nephrologists at HSC transplant clinic generally work at clinic in three-week stints. While I appreciate how this system allows for multiple opinions and brain-power when it comes to doctoring a patient like me, it is also slightly jarring. As well, in my experience, important information sometimes is lost in between "shift changes".
**I have come to realize that medical specialists are incredibly intelligent, persevering individuals. A person does not get through such years of medical school without some assiduousness. I commend that. This same focus, however, can eventually work against the very patient such a doctor is attempting to help, as other medical issues presenting themselves sometimes are deemed less important, when in fact, they are crucial to the whole well-being of the patient. Case in point: the lymphocele began presenting itself two weeks post-surgery, but was not addressed until many weeks later.