- 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.
Swelling Update & Other Goofy Tidbits
9 02 2009Comments : 12 Comments »
Tags: 13 fear is real, friday the 13th, kids say poop, Mayo clinic, not cool anymore, swelling
Categories : entertainment, family, health, kids, life, movies, personal, television
A Swell(ing) Journey Part XII: Nearing an Answer?
23 12 2008First 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.
Comments : 10 Comments »
Tags: kidney transplant, Mayo clinic, swelling
Categories : family, health, life, personal
The Birthday Hijack
7 12 2008I’m hijacking my husband Matt’s blog to announce that today is his birthday. It’s also the anniversary of the bombing of Pearl Harbor, but I think we all know which event has more historical significance.
Please wish him a happy birthday. You can send other messages too if you would like. Consider this an open forum post. I’m going to do so right now: Matt, please don’t keep your writing talent and keen sense of wit all to yourself. Post more often. There, I said it (with love, of course).
Love,
Allison and the Imp
Comments : 11 Comments »
Tags: Happy Birthday
Categories : life
I’m Off to See the Wizard(s) at Mayo
30 11 2008I’ll be heading to the sunshine of Florida in a couple of weeks, but it won’t be for a beach-filled vacation. In my attempts to stay sane and return to my previously “normal” (at least by my standards) life, I am heading to the Mayo Clinic in Jacksonville to let the wizards doctors there take a shot at figuring out why I have a life-altering amount of swelling that has left me feeling like “I’m not in Kansas anymore.”
Picking which Mayo Clinic to visit was a no-brainer. My sister, the kidney donor, lives near the one in Florida. Also, when it comes down to it, who would pick Minnesota over Florida in December? (The Phoenix option was just too far away.)
My favorite thing about the potential of this visit is the confidence of the place. After fully informing them of the thus-far-undiagnosable condition of which I have become the unwilling recipient (despite being poked, prodded and photographed by a plethora of physicians in various parts of the Midwest), their response was, “Come here, and we’ll figure it out.” I really liked hearing that, with no mention of words like, try, maybe or might.”
I am scheduled to be seen by several doctors from many different walks of doctoring over a four day period. I like the odds that they will figure something out.
I hope, upon arrival, it doesn’t turn out to be some has-been behind a big curtain. Although I’d take that if I could wake up and find out this has all just been a bad dream…a la Dorothy. There may be no place like home, but it’s time to give these out-of-town medicinal wizards a try.
After all, I still plan to be the one to teach my little girl to play tennis. I don’t want to just be the chauffeur who gets her to the courts.
Comments : 10 Comments »
Tags: edema, Florida, Mayo, mystery disease, swelling
Categories : family, health, life, travel
111 Things for Which I Am Grateful
24 11 2008(See my wife’s list here.)
1. Good brain functioning
2. My kidney-donating sister, and the other siblings who were also willing
3. My daughter’s hugs
4. My wife’s intelligence and wit
5. Old Chicago pizza
6. The actions of Jesus
7. Scary movies
8. Logan’s Roadhouse chili
9. Pastors who are able to move me
10. My daughter’s joy while trick-or-treating
11. Jolly Rancher Pink Lemonade suckers from my daughter’s trick-or-treating
12. Mistletoe
13. My nephew’s sense of humor
14. Passing hidden radar guns while going the speed limit
15. Breaking Benjamin’s music
16. Great daycare centers
17. Good doctors
18. Gentle dentists
19. People who adopt
20. Movie popcorn
21. Exciting books
22. My wife in skirts
23. Comfortable shoes
24. Good in-laws
25. Antibiotics
26. ESPN radio
27. College basketball buzzer beaters
28. MP3 players
29. Christmas lights
30. Summer
31. The way my daughter likes to shut every door in the house
32. The men and women who fought WWII
33. 30 Rock
34. Peaceful, sleeping pug dog at home on a chair
35. Less news about Paris Hilton and Lindsay Lohan
36. Chuck and Shandi on Lingo, but especially Shandi
37. Good friends playing fun games
38. Free tennis courts
39. Hilton Head Island
40. Nice strangers
41. Living in a place that’s kind of like a small town and city all in one
42. Sinatra Christmas songs
43. Great writing pens
44. Wrinkle-resistant clothing
45. My wife’s smile
46. Naps
47. People who give good haircuts
48. Libraries
49. My daughter’s cherry-scented shampoo
50. The Opryland Hotel
51. Chicken and dumplings
52. My wife’s photographic eye
53. Open highways
54. Good, kind-hearted family
55. Guitar solos
56. Well-acted plays
57. Emails
58. Cool late night radio talk shows
59. Drive-in theaters
60. When you wake up feeling great after the flu bug has passed
61. Microwaves
62. Dishwashers
63. Packages in the mail
64. Health insurance
65. Soft, fat pillows
66. Warm blankets
67. Snow days
68. Kissing my wife on New Year’s Eve
69. Memories of childhood pets
70. Believing in heaven
71. People who stand up to bullies
72. Tears of joy
73. Eyesight
74. Starburst fruit chews
75. Grilled cheeseburgers
76. Tall trees
77. Orange juice
78. Granny Smith apples
79. July tomatoes
80. Bikinis
81. Hardwood floors
82. Good neighbors
83. Safe roads
84. Police officers
85. Being out of school
86. Volunteers
87. Going on dates with my wife
88. Windows
89. Cures
90. Being unique
91. My wife’s determination
92. My daughter’s assertiveness
93. Remote controls
94. Air conditioning
95. Heat
96. Educational t.v.
97. Mysteries of the world
98. Freedom
99. Starry skies
100. Forgiveness
101. Creativity
102. Penguins
103. Programmable thermostats
104. Hand-written love notes
105. Purring cats
106. Fireworks
107. Surprises
108. The sound of crickets
109. My daughter’s breathing when she sleeps
110. Smoke detectors
111. Being touched
Comments : 6 Comments »
Tags: holiday, meme, Thanksgiving
Categories : holiday, life, meme, personal
Halloween Meme: Axe Me these 13 Questions
25 10 2008Halloween is obviously the best day ever! I can’t wait to see my three-year-old daughter running willy-nilly through our neighborhood in her cowgirl costume. (If I’m lucky, maybe her mom will don a French Maid outfit.) In honor of the festivities, I felt a burning desire to create a 13 question survey. Here it is…feel free to answer it yourself if you like. My fetching wife is doing it as well.
1. What is the worst Halloween treat you’ve ever received while trick-or-treating?
A religious brochure addressing the evils of Halloween. Also, homemade popcorn balls are not a good treat on this occasion. Popcorn balls? Seriously? Sounds like a painful condition.
2. What character from any horror film would you most like to play?
I’ll say Freddy Krueger because he has the best lines. Who can forget, “I’m your boyfriend now, Nancy.”
3. Would you rather be a zombie, alien or psycho? (Why?)
I have to choose psycho because zombies and aliens usually don’t get to carry around axes or chainsaws.
4. How many Halloween, Friday the 13th or A Nightmare on Elm Street movies do you own on dvd combined?
Seven of them combined. Looking forward to the Friday the 13th remake re-imaging due out Friday the 13th of February, 2009.
5. What is the scariest movie you have ever seen?
I’m going with the original version of The Exorcist. Pretty disturbing…

"Hmm, that can't be good."
6. Lamest Halloween costume you have seen?
I’m not going to count the t-shirt that says, “This is my costume.” I think it has to be the kid in a weird green bug head thing. (See my wife’s blog for the picture.)
7. Favorite Halloween treat?
Full size Reese’s Cups.
8. Friendly faced Jack-O-Lantern or scary one?
Scary one, please.
9. Have you ever had nightmares about a scary movie character?
Yes, I have several times. It has involved being chased through the woods by Jason Voorhees. I think I usually get stuck in mud, too.

"You didn't think you could get away, did you?"
10. Best thing about Halloween?
Hey, the trick-or-treaters running around is cute and great. However, my answer here has to be the women dressed in risque costumes. For the sake of clarity, I’ll include a picture example (not of the trick-or-treaters…we all know what that looks like.)

"Would you walk the plank for me, matey?"
11. Strangest Halloween custom you’ve heard about?
People stealing/hurting people’s black cats. That’s just wrong.
12. Person in your family who most likes Halloween (not counting yourself)?
I’m working on my daughter and trying to instill the same excitement about Halloween, but for now I’ll go with a nephew of mine.
13. Are you superstitious? If so, name at least one superstition of yours.
Not especially, but I guess I am somewhat. I really prefer odd numbers to even ones.
Comments : 9 Comments »
Tags: friday the 13th, halloween, Halloween survey, scary movies, sexy costumes
Categories : halloween, holiday, life, meme, pop culture, scary
A Swell(ing) Journey Part XI: The Frustration Chronicles
11 10 2008Eight months. I’ve been lugging around an extra 30 to 35 pounds of seemingly unexplainable fluid in the lower half of my body for eight months. It’s kind of like babysitting someone’s three-year-old for 8 months, 24 hours per day: I’m ready for his parents to come home and relieve me of the weight.
So, here’s the update. For the past 5 weeks, I’ve been attending daily physical therapy. They were wrapping the swollen areas up like a mummy, and the wraps remained on until I returned the next day. They would unwrap, let me go wash up and then re-wrap it a bit more tightly. The negative side of this is that it’s a bit uncomfortable and makes something we generaly take for granted, showering, impossible except on Sundays when I got to be wrap-free. Let me just say, giving yourself a sponge bath is not really all that easy or fun. The positive side of this is that it means I have everything I need to dress as a mummy this Halloween.
So, is it working? Unfortunately, no. It was kind of squishing down my legs and making them look better, but the fluid wasn’t leaving my body, it was just moving to the unwrapped areas. In fact, we decided this week to stop doing it. The doctors are still perplexed. The physical therapist is perplexed. Even my own three-year-old is talking about “The Swelling.”
Next, we are trying a new drug to go along with the lasix and some massage therapy at the physical therapy shop. The past two days have been a bit better, but nothing has happened that allows me to get on here and say, “We’ve found the answer!” I’m waiting to hear back from the specialists in St. Louis as to what I am to try next. My doctors continue to tell me this should NOT be permanent. Basically, all of the unfixable conditions that might cause this have been ruled out through various tests. I do not have lympedema or cancer or a heart condition or a liver condition or any problem on chest x-rays. Numerous scans have shown no blockages or blood clots. Whatever I do have remains a mystery. It’s still possible this was a strange reaction to a medication, but I’ve now been off of Rapamune (see previous entries on this subject) for 6 full months. The doctor I see who felt strongly about this being the cause is now beginning to doubt it.
I’ll keep you posted, and I appreciate all your kind words and prayers.
p.s. Would the rightful owners of a 30 pound fluid monster please claim it? I don’t really want to take care of it any longer.
Comments : 15 Comments »
Tags: phsyical therapy, rapamune, swelling
Categories : family, health, kidney transplant, life, personal











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