A Swell(ing) Journey Part V

Wednesday brought another road trip to Louisville. This time, it was to have a CT scan with contrast/dye. The previous scans were done without the contrast in an effort to avoid the dye that can be harmful to kidney patients. However, the transplant surgeon felt there was a good chance that the cause of my swelling had not yet been found because no contrast had been used.

So, I spent a 10-hour day in a hospital bed, hooked to an IV, which provided pre-dye and post-dye protection for my kidney. Despite some confusion at the hospital, the scan was completed. I received results today. The good news is, the dye seems to have done nothing bad to my kidney. The crappy, frustrating news is, this test still did NOT reveal any possible cause for the swelling.

At this point, the doctors are consulting and working on other possible causes while I hobble around like an ogre. Someone is supposed to call me Monday to tell me what to do next, which could be to see a urologist. All the “obvious” potential causes have been ruled out. I mentioned “Filariasis” to my transplant nurse during a lengthy phone conversation this afternoon. This is a weird condition I found while searching online that can cause swelling. It occurs when a human gets worms in their lymph nodes. I don’t feel like I have worms, but, hey, who knows what this is? Anyway, the nurse did not seem to think this was very likely. Her response to me: “Matt, get off the internet…now.” I did…except to write this short blog, of course. She is probably right. Upon further inspection, those worms are generally only a problem in tropical countries I’ve never visited. I guess the worms around here are not attracted to lymph nodes.

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A Swell(ing) Journey Part IV (Update in comments)

There may actually be an answer in sight to the crazy, severe swelling that has knocked me for a loop for the past month. A few things have transpired since Part III.

1. The MRI, unfortunately, did not discover the cause of the swelling.

2. The heavy doses of the water pill have helped, a little, to at least give me some relief and improved movement and energy. It has not been enough to be able to return to work or go back to “normal” but has been enough to allow me to do a few more things out of the house. The main problem with this, of course, is that it is just symptom relief. The other frustrating thing is that one day there will be some improvement and the next day a step back.

3. From doing my own research about a blood pressure drug that I have been taking (or more specifically, my switch to its generic version not long ago), it was determined to be worth a shot to change medications. It is POSSIBLE this is the culprit. I am still hopeful this could help, and the medication switch just happened in the past couple of days. The doctor thought it might take several days to see a difference.

4. My wife, daughter and family continue to find ways to become even bigger sources of joy and happiness, and I do not want anyone to think I am spending all of my time in despair. I have my bad moments, but, overall, life is still a splendid thing. I watched my daughter frolic and smile and even take turns on a playground yesterday in a manner that elicited a compliment from another parent, and my heart is still full from the experience.

Despite my hopes that the medication change might just fix everything, a different answer may be slowly coming to light. Today (actually just within the past hour), I received a call from the Louisville doctor’s office about my latest labs (blood was drawn yesterday afternoon). As many of you know, I received a kidney transplant (due to a kidney disease) about five years ago. The possibility that something (possibly kidney rejection) was going on with the transplanted kidney was, of course, a leading candidate as a cause for the swelling. However, lab after lab over a three-week period continued to indicate that the kidney was pumping along, happy and healthy. This prompted a barrage of other possibilities and tests (see Parts I, II, and III for more), which eventually showed healthy heart, vascular and liver function, among other things. Basically, more and more potential causes were ruled out. During this time, the doctors seemed to continue to suspect the kidney, but the labs and tests kept indicating otherwise.

Well, the labs from yesterday finally pointed to a potential chink in the armor of the kidney. The creatinine level that shows how well your kidney is cleaning out your blood, finally worsened a bit. It was worse than it has been since a couple weeks after the transplant in 2003. It was enough that the doctor wants the lab repeated on Monday.

Though kidney trouble is certainly not what I’m hoping for, it would be preferable to me to at least know what has been causing me to have a bloated lower half. Even if it’s the worst case scenario, I believe that there is possible treatment for kidney rejection, and that it does not necessarily mean immediate loss of the kidney. The labs for Monday are scheduled. Best case scenario: It is possible that yesterday’s lab was just an anomaly. It is possible that the creatinine change is due only to the fact that I’m taking the water pill, and maybe the blood pressure med switch will solve the swelling.

I will keep you posted. I will continue to appreciate your thoughts and prayers, and I will have a lot of fun this weekend with my family. I have a nephew coming to town. We’ve always been close, but he’s lived pretty far away for many years now. It will be fun to see him.

p.s. Here is an actual pic of the kidney I stole received from my sister:

It’s sad to think my own body might be attacking something so adorable.