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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10 responses

24 12 2008
Peter Parkour

Merry Christmas, Matt! :D

24 12 2008
Stephanie of Stopbouncing

Well, some answer is better than no answer.

Glad it’s not anything REALLY REALLY horrid.

25 12 2008
mel

House would know, but since House doesn’t REALLY exist, I’ll continue to pray for more answers and less water.

Merry Christmas!!

26 12 2008
Stacey

I hope the New Year brings you some solid answers already.

Happy Holidays.

27 12 2008
pamajama

I’m so happy you finally went to a hospital with the word “Mayo” in its’ title. Ever since I was a little girl it’s been in my head that they’re the absolute #1 best, which is what I would have wished for you this Christmas:) Yea!

5 01 2009
Taoist Biker

Best wishes for a speedy resolution to this mystery and a fantastic (and non-swelled) 2009!

5 01 2009
kimiam

I hope you get it all figured out and I hope to see you in great health soon!

15 01 2009
nathaliewithanh

The light at the end of the tunnel? Finally? I loved the bastardized diagnosis. Very… Eloquent?

I wish I had relatives in Florida. :-)

Doctor patients at a clinic are the same thing as Japanese folks at a sushi restaurant: most definitely a good sign!

28 01 2009
Catie

I HATE when my body does stuff just to piss me off. I hope this really is the light at the end of the tunnel. God bless!

5 02 2009
WC

How about a progress update. Hope things have improved.

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