Swelling Update & Other Goofy Tidbits

9 02 2009
  • Swelling: It’s been a  couple of months (almost) since my trip to Mayo Clinic, and my local doctor is working with me on their recommendations.  Overall, I’ve lost about 15 of the 45 lbs of swelling that I had.  The progress has been slow and with a few ups and downs, but it’s heading in the right direction – giving me great hope.  I’m moving a little better and looking slightly less freakish, but I’m not yet at a point of being able to return to my “normal” life (which would probably still be a bit abnormal to most, but that’s a different story).   There is a very recent possibility as far as a potential cause that I discovered quite by accident.  It’s possible that another medicine that no doctor even remotely suspected could have something to do with the swelling.  This is something SO recent that I’m not going to bother going into detail here, but after a few days off of it, I’m seeing a little better progress each day.   Anyway, the news is good right now…slow, but good.
  • From Cool to Tool:  It’s funny how things can go from being “awesome” to “dorky” in a relatively short time.  Parachute pants, jeans jackets, the Men Without Hats’ tune Safety Dance and the use of “air quotes” are good examples.  To me, the Blue Tooth headset has joined this sad list.  I’m not bashing anyone who really needs to use one, and I understand they can be effective tools in some situations. However,  speaking of tools, that’s exactly what I think when I see a dude walking around outside and talking loudly with that dorky-looking thing stuck on his ear – what a tool.  I think they have gone from cutting edge, status symbol territory into something that losers THINK makes them look cool.  Who is with me on this?  I’m really curious.
  • Kid update: My three and a half year old girl, who seems to think she is about 12, continues to be the light of my life.  Sadly, she currently believes that she is the funniest person on earth whenever she inserts the word poop into a song.  Example:  Twinkle, Twinkle Little POOP! She may not have the most sophisticated style of humor yet, but she continues to amaze me in other ways.  She very much enjoyed watching Charlotte’s Web.  The ending, of course, lead to a discussion about death.  (Spoiler alert if you still do not know what happens at the end).  She asked questions about why Charlotte had to die.  We talked about living a long life and how people go to heaven.  First, she wanted to know if her dog would go to heaven.  Since everyone knows that they do, I answered in the affirmative.  She then asked if she could live with Mommy and Daddy when she goes to heaven after she gets old.  I’m not sure how her future husband might feel about this, but I answered with a firm yes once again.  She then got a sad look on her face and said, “I don’t want Mommy to die.”  I hugged her tightly and again assured her this would not happen for many, many, many years.  Before her mother could get a big head about this, my daughter quickly added that she didn’t want “Elizabeth” (a friend of hers) to die either.
  • On the “scary” front: I’m looking forward to attending a midnight premiere of the new Friday the 13th movie this week with a few other horror lovers.  I’m intrigued by the fact that it appears to be a re-imaging of certain elements from several of the first few Friday the 13th films as opposed to just the first one.  Anyone else love these old, dumb scary movies?  Also, who else has seen the reality, contest show called 13:  Fear Is Real?  It has some of the same cheesiness as other reality shows (most of which I detest), but I can’t help having a soft spot for this one.  The reason is that my nephews, friends and I made “scary tapes” as kids.  They were cassette tapes that instructed the “victims” (we took turns being victimized) what to do and where to go in the woods.  We did them at night, of course, and they actually were pretty scary some times.  Even so, it was always more fun making the tapes than doing them.  We enjoyed creating new characters and embellishing upon them in future tapes.  Some of our favorites included:  Slicer Dicer, Harry Maniac, Rickety Inflictor and Brat & Splat who were evil conjoined twins).  Well, someone with a MUCH higher budget has turned this type of idea into a reality show.  It’s fun if you like horror stuff.




A Swell(ing) Journey Part XII: Nearing an Answer?

23 12 2008

First of all, I can’t say enough good things about the staff of Mayo Clinic in Jacksonville, Florida.  My week there, which ended this past Friday, was a very pleasant experience (well, except for the whole needle/camera in my neck artery thing during a venogram).  Dr. Paul and Dr. Gonwa are awesome and continue to collaborate in an effort to alleviate the mystery swelling I have been experiencing for nearly a year.  The staff at the front desk of 3 North, which became my second home for four days, were patient (more on that in a minute), helpful and cheerful and frequently greeted me with a playful, “Are you back here bugging us again?” upon my many return visits.   The clinic is beautiful, and the weather was a balmy 78 degrees for most of the days during my stay.  That was a very welcome contrast to the ice and below-freezing temperatures my wife was enduring back home.  If you have to be in a clinic, you might as well be surrounded by palm trees and the sounds of tropical birds.

But the big question is:  Did they figure out the swelling?

The answer:  I don’t know yet.

Many more tests were done, and all (I do mean ALL) of the “normal” things that might usually cause this swelling were pretty much ruled out, yet again.  Even some of the less normal things were ruled out as well.  It does not appear that I have any sort of blockage in veins or arteries, including the vena cava.  There are no clots.  My heart, lungs, transplanted kidney, liver, pancreas, pinky fingers, etc. are all doing well.  They say it’s been way too long for this to be a continuing reaction to the drug Rapamune, which I discontinued many months ago.  The list of things that is NOT causing this goes on and on.  Other things which now appear unlikely are lymphedema, celiac’s disease, cancer, blah, blah, blah.

So what is it?  They believe I am dealing with one of two things.

1.  It’s possible there is something unusual going on in my lymphatic system, something that would not be very simple to pinpoint with any easy test.

2.  Dr. Gonwa has seen cases in which transplant patients have a weird sort of “reaction” to the transplanted organ.  It is weird in that, the organ is working fine, and it is not being rejected by my body, BUT my body is still not pleased with this intruder and starts to retain water in a sort of mini rebellion against the situation.  My body is saying, “Okay, foreign kidney…the anti-rejection drugs are protecting you, but we still don’t like you.  How about we fill up with fluid?  That should show you, you bastard.”  This is my best attempt to explain this theory.  I’m sure I’m botching it up a bit, and it’s far more eloquent when Dr. Gonwa explains it.

At this point, they think I am dealing with #2.  The best thing about this is that it should be very treatable once we figure out the correct dosage and combination of diuretic drugs.  This process has begun, and I’ve seen some slight improvement, enough to give me hope.  Just today, the dosage of one medication was doubled.  I think we might be on the right track.

As I take a wait and see approach, I think back on my trip and realize how many people I need to thank.  My sister (the kidney donor) and her husband graciously took me in for the week.  How lucky am I to have family living near a Mayo Clinic?  My other sister and her husband made the long trip with me, which made it much more enjoyable.  That “lucky” brother-in-law had the pleasure of chauffeuring me around, including early morning trips to the clinic each day.  I also have to thank my wife, who was suddenly thrust into a week of “single-parenting” a very rambunctious toddler.

And, as I mentioned already, the staff of Mayo deserve major kudos.  Most of the patients who were there seemed to realize they were in a special place and were thankful for that. There were quite a few retired doctors there as patients (I figured this was a good sign).  However, I witnessed two “interesting” patients who were major pains for the staff.  The first one thought she was better than anyone else who was waiting.  She was probably 50 or so, and she made a very loud fuss in her thick New York accent to anyone who would listen about how annoyed she was that she couldn’t have any coffee yet.  She, like most of us, was fasting in case any fasting labs were to be ordered by the doctor. She was desperately trying to make the staff understand that she needed to be seen by the doctor right away so she could have her precious coffee.  I’m guessing this was her first time dealing with some sort of serious health issue. In my mind, I was thinking, “Welcome to the club, lady – and you better get used to fasting in the morning.”

The second patient was a thirty-something woman who was loudly talking, ranting and complaining on her cell phone (in a waiting room full of patients) about some other female in her life who is apparently a “skank” and a “ho” and a “bit*h.”  She was oblivious to those around her, including the many elderly people who were trying to tune her out.  After this phone call, she then set her sites on the front desk staff.  She complained about how long she and her husband (he was in a wheel chair and had a long cast on his leg) had been waiting for his appointment.  The front desk staff person reminded her that it was actually only eight minutes past the appointment time and that they had arrived very early for their appointment.  The woman did not seem to grasp this concept and cussed out the staff person before telling her husband they were going to leave.  I guess he didn’t get to see the doctor that day, because she stormed out with him.   The ironic thing about the actions of these two patients is that the Mayo actually did a pretty good job of keeping the appointments moving without the waits being too excruciating.  This is despite the fact they see about 2,000 patients per day.

For now, it’s time to be patient and hope these medication combinations can fix the problem.  In the meantime, I’ll enjoy the joy on my daughter’s face when she realizes that Santa has left a few things under the tree.








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