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.





A Swell(ing) Journey: Part VII

14 04 2008

Update: WC is a pharmacist who left a comment today on part 1 and ironically beat me to the punch before I could get an update on here! Hopefully you hit the nail on the head as to the possible cause of my swelling. After seeing several nephrologists, it was my internal medicine doctor who (over the weekend) decided that it’s “probably” a reaction to one of the anti-rejection meds I am taking. This came after many, many other things had been ruled out. I told my nephrology office what he thought, and they agreed to take me off Rapamune and put me on something else. (They’ve been in frequent contact with me and have been willing to try things.) So, I hope this is it! I should know in about 10 days or so if it’s working, they said. The medicine switch just happened today. I want to be clear that I’m not trying to scare anyone on that drug. My nephrologist says it’s working well for many patients, and it was great for me for about 4 years. There are some very good reasons to be on that if you’ve had a transplant, as opposed to being on some of the other drugs. Plus, I don’t KNOW yet if that’s the problem. Even if it is, everyone is different, and for some reason, I developed a reaction to it.
I’m very, very, very hopeful that this has finally been figured out. It actually seems possible this time that I may be able to post a final “resolution” blog about this in a week or two.





A Swell(ing) Journey

20 02 2008

When they stick someone else’s kidney in you so that you can go on living, you get used to seeing doctors and having lab work done, a LOT of lab work. Terms like creatinine, BUN, and urinalysis become common in your language. This is par for the course, and I gladly accept it. I have enjoyed nearly five healthy, fun-filled years since my generous sister readily agreed to let them cut her open and steal a kidney to give to me. (I have other amazing siblings who were willing as well.)

My doctors, nurses and lab technicians have been great. (I give my highest recommendation to the kidney clinic at the University Of Louisville.) I really can’t even complain about my health insurance. There were tense, frustrating times with them, but for the most part the amounts that have been covered have been reasonable. Without health insurance, I’m not sure I’d be alive to see the radiant smiles of my wife and daughter.

One interesting and somewhat annoying aspect of being a transplant recipient (besides the big pile of pills taken morning and night) is that you have to watch your health very closely. If you sneeze funny, you’re supposed to let someone know about it. The risk of kidney rejection never goes away, and the medications’ side effects can adversely affect the rest of your body.

When I recently woke up with some strange swelling in a part of the body that a guy really doesn’t want strange swelling, little did I know that a whirlwind of doctor’s visits, tests, labs and a mystery that Dr. House would appreciate was about to begin. In the past week, I’ve lived a life of health care. (The following is not a complaint, as my care has been excellent. It is more a journal of a strange journey.)

Day 1: I visit my family doctor’s office about the initial swelling. Besides the swelling, I’m feeling fine. They set me up with a specialist in that area, but the next available appointment is more than a week away.

Day 2: The swelling increases, enough that it affects the way I can move. I’m also feeling a littler weaker. I call to see if my appointment with the specialist can be moved up. It does get moved up a couple of days due to a cancellation. However, it’s still about a week away.

Day 3: I just don’t feel right. I still have the swelling. I also have some unexplainable weight gain (more than just a couple pounds). I call the Louisville kidney clinic to let them know what’s going on. They order the standard labs to check kidney function to make sure I’m not going into rejection.

Day 4: I get the kidney results, which are fine. That is great news, but the swelling has spread to most of the lower half of my body. It’s getting difficult to continue working. It’s actually getting difficult to walk more than a few seconds at a time. The specialist appointment is still off in the distance, but I will be seeing my local kidney doctor (a regular check-up appointment) the next day.

Day 5: I see the local kidney doctor. The swelling is bad and all over from my abdomen down. I now have gained over 15 pounds in just a few days. The doctor expresses extreme concern. While this could be a sign of kidney rejection, the recent labs show otherwise. The labs also seem to indicate that it’s not the liver. The doctor orders emergency tests be done right away at the hospital. I go and spend the evening at the hospital and, after drinking a bunch of goop, I have a CT scan, a doppler ultrasound test on both legs, and a chest X-ray. (Think lots of bills coming in the mail; gone are the days of a $250 deductible!) They are checking for blood clots and a couple of other possibilities that would explain the swelling. My local kidney doctor is great and is waiting for the results via his cell phone, even though it’s well into the night at this point. The results come back as normal. The doctor talks to me by phone and admits to being somewhat baffled. A water pill is prescribed to try to give some relief from the swelling. The doctor decides to consult with the Louisville kidney clinic doctors tomorrow morning and also instructs that I get the kidney lab work done again in the a.m since kidney rejection is still a possibility, though this doesn’t seem to exactly fit the situation.

Day 6: I start the water pill and go and have blood drawn again for the kidney check. I also give my urine sample to the lucky lady at the lab who always seems excited to get it. Let’s just say it’s good to be near a bathroom when taking the water pill. I speak to my local doctor in the morning. After the consult with the Louisville doctors (who are also somewhat puzzled), the next course of action is that I get an echocardiogram to check for heart problems. (This wasn’t one of the first tests ordered because my heart sounded fine at the appointment with my doctor and because I wasn’t having any other heart-type symptoms.) The test is scheduled for tomorrow morning.

Day 7 (Today): I have the heart test done in the morning (after some frustrating confusion in which the heart place thought I was coming next week. I had to call my doctor’s office, and they straightened this out). Just ten days ago, I was doing a daily cardio workout and looking longingly at my new tennis racquet, counting the days until spring arrived. Now I’m feeling like I have the legs and feet of an 80-year-old, and I’m counting the minutes until the next results come in. I’m praying and staying positive and determined to overcome whatever this thing is. I hope to hear something like: “The problem is ______, and we can fix that with a temporary medication or a simple surgery.” I don’t want to hear, “Your body is rejecting your kidney” or “You need open heart surgery” or “You have ______ disease, and it’s not treatable” or “You have ____, and you need to take a bunch more pills for the rest of your life.”

Regardless of the outcome, three things are certain. I am ever grateful to live in a place where medical advances have allowed me to overcome polycystic diseased kidneys that stopped working. I have an incredible family (some of whom I still hope to be beating at tennis in the coming weeks). I have enjoyed every second of the good things in life since my transplant. It’s kind of funny how much prettier green grassy fields along the highway look when you’re really appreciating being alive.








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