Updates from the last week or so...

I’ve got a few items to catch you up on since you last heard from me. Elevated kidney numbers, bypass surgery, and a new item which has developed.

As we suspected, the kidney numbers that ticked up last week have come right back down to their previous levels. If you remember our discussion on creatinine, which is a measure of how well the body (kidney) clears waste products, a normal reading is around 1.0. Prior to surgery, my creatinine levels were approaching 6.0, with most readings falling in the 5.6-5.8 range. Immediately following surgery, my readings dropped down to as low as 1.5 before settling in around the 1.7-1.8 range which is a good level.

Two weeks ago, I had three consecutive labs where the creatinine levels showed 2.1, 2.0, and 2.0. These readings could have been a sign of an emergent problem, and out of an abundance of caution, we decided to postpone the bypass surgery for a few days to watch and see what was going on. As you can imagine, many factors will influence these readings from something simple like hydration levels to something much more insidious such as organ rejection. We had our suspicions on what had caused the elevated readings, which happened to be right in line with what the kidney doctors thought, but taking the most conservative route, we decided that the best approach was to “wait and see.”

As a part of the post-transplant protocol, a patient should drink about four to five liters of fluids each day. That’s not a problem for me, as I typically drink that much during a routine day, and since transplant I have been drinking about seven liters of water daily. With the healing and recovery going so well, I have been spending a good bit of time outside, on the lake, walking in the neighborhood and generally enjoying myself while recovering. With the heat of the summer and my increased activities, I’ve been sweating a lot, and we think that’s why the creatinine readings crept up two weeks ago. Since the elevated readings of last week, I’ve been drinking about eight or nine liters of water, and cut down on outdoor activities. The creatinine levels have responded appropriately, returning values of 1.7, 1.8, and 1.7, right in line with our expectations. With our theories seemingly supported by data, and the blessings of the transplant team, we are proceeding with the CABG procedure tomorrow, August 9.

The new item which has developed has also contributed to the limited physical activity and contributed to the increase in fluid intake. I have a ruptured cyst in one of my native kidneys, and it hurts. Badly.

Ruptured cysts are quite common in Polycystic Kidney patients with over 70% of patients experiencing them. I, and most of my family, have been unaffected by rupturing cysts. Aside from limited function and being a contributing factor to secondary problems (vessel disease) I have experienced very few issues with my kidneys at all. A ruptured cyst could happen at any time, and we are unsure at this time whether this one is related to the transplant or if it’s completely coincidental. I don’t know if we will ever fully understand the timing, but it’s has happened now, and we’re dealing with it.

The symptoms started early on the morning of Tuesday 8/1, the morning before the original date for the bypass surgery feeling like an upset stomach. Throughout the course of the day, both the location and the intensity changed which had an effect on my mental state as well. As I worked through pre-operative procedures, labs, and admissions processing, the discomfort morphed into pain, and the pain moved from the stomach area to the upper left quadrant of my abdomen, settling right now top of my left native kidney. Kidney pain plus elevated creatinine levels equaled One Worried Worley.

Wednesday brought no relief, so we went to the Transplant Clinic on Thursday morning. By Thursday the pain was quite intense and after an examination, the doctors admitted me to the hospital for observation, evaluation, and testing. We spent Thursday night in the hospital, I surrendered some blood, got poked, prodded, and scanned while searching for a solution, ….but still hurting. By Friday morning, we had eliminated some of the more dangerous diagnoses, (many of my imagination which prompted one of the doctors to ask if I had any previous medical training!) and settled on a couple of items which, by comparison, are relatively benign, infected cyst, or ruptured cyst.

Treatment for both rupture or infection of kidney cysts is very similar, except one involves a bag of hanging and/or oral antibiotics. When a cyst on the outside or the edge of the kidney ruptures, the fluid leaks out into the periodontal space in the abdomen which gets reabsorbed into the body over time. When a cyst inside the kidney ruptures, the fluid leaks into the kidney itself which isn’t designed to hold fluid. Think about an overinflated balloon or innertube. With nowhere to go, the fluid sits there and creates pressure on the tissue until it can be released or dissipates on its own. Medically, there is nothing to be done outside of pain management, and for those of us who don’t like taking pain medicine, your best bet is a piece of shoe leather and a bottle of rotgut whiskey! They sent me home Friday afternoon with a prescription for pain, instructions for rest and fluids, and the assurance that no matter how bad it felt, eventually it would feel better.

So, Tuesday morning, we have three good labs behind us, I’ve found a position in the recliner that doesn’t feel too bad, the cultures are clear of any bacteria, and the kids are making cookies on their last day of summer.

It’s been a little different summer for us this year. We’ve done a lot less, but we have certainly learned a lot more.

Thanks for following us, checking in on us, taking care of us, and loving us like you do.

-Brian, Jennifer, Cash, and Taylor