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

14 03 2008

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.




17 responses

14 03 2008

I hope they shaved the kidney before they “installed” it.

Your positive attitude is an encouragement, and I am very glad you have a strong family to support you.

14 03 2008
Taoist Biker

Yeah, I would think a fuzzy thing like that would be all tickly inside.

Best thoughts to you and your family as you work through this.

14 03 2008

Shucks Matt, sorry you are having such a rough time. Praying that it is not your kidney, even though it would ease your mind to know.

14 03 2008

I’m sorry you’re going through all this. What an uncomfortable and frightening experience.

I hope your medication turns out to be the culprit, it not only seems a much simpler solution, but I also feel bad for the kidney. Rejection is a terrible humiliation to bear.

15 03 2008

It looks like maybe you are getting closer to knowing what is happening. I hope in the end it is good news. I will continue to keep you and your family in my thoughts.

P.S What a cute kidney you have. 😛

15 03 2008

Oh my gosh, your kidney has a winning smile, I hope your body starts being nicer to it!!!

And also, what a great family you have, I’m so happy they continue to bring you joy 🙂

We’ll continue to follow your saga and wish you good thoughts!


16 03 2008

I stumbled across your blog, and I am so glad I did. For the past five months my labs indicate my kidneys are not filtering correctly. I have also seen a dramatic increase in swelling in my legs, ankles and abdomen. I used to have bad heart disease, but it working fine. Just last week, the heart Dr. said if I have protein spilling into the blood from kidney failure it will produce swelling. I see the kidney Dr. on Tuesday. again.
Just reading your saga seems to make me feel better for some reason. Thanks and good luck to you.

17 03 2008

Phew! God bless; hope they get more conclusive results soon. Hope that your weekend with family provided some much-needed distraction. 🙂

18 03 2008

Update. Well, the latest labs really did not help to clear anything up. The kidney function this time stayed about the same. The next step is to go see a transplant surgeon as soon as they can get me in (in Louisville) to get her/his opinion. I also see a local doctor about it in two days.

18 03 2008

That’s a very nice kidney, much nicer than mine.

18 03 2008

They still don’t know anything? You’ve got to be kidney me.

18 03 2008

Good luck, hopefully it’s only minor. Your attitude is amazing!

20 03 2008
Two Write Hands

I came here looking for something entirely different via a search engine, but then I just started reading. And, well, I thought I’d send some regards your way. That is the most adorable kidney I’ve seen in my life. 🙂

Interesting (or maybe not) side note: my father was born with three kidneys. The doctors say, however, that one of them doesn’t function.

20 03 2008
Maggie, dammit

Your positive attitude continues to be inspiring to me. I know that’s not much in the grand scheme of things in your world right now, but it’s true. Keep enjoying those little moments with your family.

21 03 2008

Friday Update: The doctors (I saw two) yesterday believe (as the others have) that there is still likely a blockage in the abdomen somewhere. They explained that the tests I’ve had may not have shown it because no dye contrast was used (because dye contrast is bad for kidney patients). So, they want me to get a scan with the dye early next week at their transplant center in Louisville. They will give some sort of pre-treatment to try to alleviate some of the potential negative effects of the dye. They believe the scan will probably show them what the problem is. They believe the most likely causes would be wither a vein blockage, which should be very fixable, or a lymphatic problem, which is not so fixable. They seemed to be leaning toward the first choice, though. Thanks, again, everyone. I’ll post an update when I know something.

21 03 2008
Sherri Cornelius

Still praying for you, Matt.

12 05 2008

I just found your blog through mine (“possibly related posts”). I hope it’s not rejection, but if it is, they can hopefully head it off.

I just read your update, and I have heard of people with transplants getting dye; I believe they aggressively hydrate with IV fluids, and give a med called MucoMyst (acetylcistiene; not sure if that is spelled correctly).

I just had a kidney transplant on May 3, so I can at least relate to the worry of rejection. Hope everything goes well. Just try to keep that positive attitude.

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