- 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.
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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
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.
Comments : 10 Comments »
Tags: kidney transplant, Mayo clinic, swelling
Categories : family, health, life, personal
I’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
Eight 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
I traveled to Barnes Jewish Hospital in St. Louis this week for an overnight stay and a test called a venogram. The hospital is renowned, and some doctors there thought it was possible that my mystery swelling could be explained like this: My old kidneys (I had a transplant and received a “new” one in 2003) may be constricting the flow in the vena cava. If so, my old kidneys could be removed to fix the problem).
The hospital is nice, and most of the staff was great! I’m very impressed with the doctors there.
Despite this, it wasn’t all good there. For one, I had to sign a consent the night before the test, of course. At that time (and I know they have to do this), they scared the %#&@ out of me by telling me everything that could possibly go wrong during the test, including massive internal bleeding, punctured lungs and emergency breathing tubes being put down my throat. I signed the consent, hoping that I wouldn’t be one of the unlucky few who actually have these things happen.
The first night, the person I shared the room with was great. He was to have a transplant the next morning, and despite his understandable nervousness, he and his family were pleasant. (Sure, they had to come in and check things on him all night, which meant very little sleep, but overall he was a good roommate).
The morning arrived, and I went down for the test. I had to wait quite a while in that department, but the people were cool. One staff member saw my book about one of my heroes and a second father figure, the late Jack Buck (long time St Louis Cardinal announcer and the type of human you want walking around on this earth). He talked about how much he loved Jack Buck as well and told a story about the time Mr. Buck had the exact same procedure done at exactly the same place I was to have it. That, along with the fact that he told me it was really a pretty safe procedure, made me feel much better. He also talked about the “entertaining” aspect of the busy department, which I experienced later when the older woman next to me kept arguing with staff, saying she wanted to talk to her son and doctor, and kept declaring she was NOT going to have anything done to her. (The staff was very good with her, by the way).
My turn finally arrived, and they gave me something to help me relax. Then they put a needle and catheter into the artery right by neck. Yes, this was a little scary and a little (though not too much) uncomfortable. The bad news arrived quickly: The test was normal, and this was “bad” news even though you usually would want tests to be “normal” because it meant that it did NOT explain the swelling I’ve had for 6 months. Back to the drawing board and the waiting game. The short story is that the next step is to wait a couple more months to see if being off of Rapamune ends up helping. It has not yet helped after 4 months of being off of it, but I understand that it could take longer. Some of the doctors still think this could be it, but others are starting to seriously doubt it based on my particular circumstances. They may start looking at problems with the lymphatic system (again, possibly caused by my old kidneys) if things don’t improve in the future. However, testing for this is apparently not as clear-cut.
So, I went back to my room feeling down that we still had not solved the mystery. I had to stay until the evening time so that I could get protective treatment due to the fact that they used dye and this can be bad for kidney transplant patients. As I returned to my room, I found out that I had a new roommate (the other was certainly moved to a private room following his transplant). The new roommate and his family had the appearance and behaviors of (and I hate to be this judgmental, but it’s true), pure white trash. The patient, who was unbelievably skinny and apparently had quite a few medical conditions, continually complained about wanting pain meds (even though he never SOUNDED as though he was in much pain, especially when no staff member was present). The doctors explained several times why he could not have them until some other things were fixed, but he basically didn’t listen to them. He also was instructed to eat nothing but ate several things, including fried chicken and candy bars provided by his extremely enabling mother, who complained frequently about doctors and nurses. The roommate also lied to staff a few times, saying he had urinated and forgotten to collect it in the provided urinal, when in fact he had not urinated at all unless he was peeing in his bed. This was significant because he refused doctor’s orders to be catheterized. The family also questioned whether or not men who wanted to be nurses are “fags” and watched annoying tv shows loudly. (Yes, I complained about this, and it was corrected. Yes, I considered telling someone about the guy lying and eating stuff he wasn’t supposed to be eating, but I decided that the staff was pretty sure what type of guy they were dealing with.)
As you can imagine, I was extremely happy to finally get out of there when I was discharged around 7 p.m.
So, it was a good place, but the 2nd roommate and the test results were a bummer. More when I have new news.
Comments : 11 Comments »
Tags: barnes hospital, jack buck, swelling, venogram
Categories : health, kidney transplant, life, personal
There are several key ingredients for a perfect Friday the 13th. All of these were present here yesterday.
- A severe thunderstorm with plenty of lightning – check
- A few more medical bills arriving in the mail – check
- Tons of major road construction combined with traffic jams near the house – check
- Finding out from a random pharmacist that you were terminated from your job two weeks ago – check
I might have had a better day if I had been running through Camp Crystal Lake being chased by a hockey-masked guy named Jason (“It’s got a death curse!”). At least there would have been scantily-clad female camp counselors around, although they do not look quite as good when disemboweled.
The day started out pleasantly enough. I dropped the little kid off at her daycare and made my merry way to Walgreen’s for one of my routine, expensive trips through the pharmacy drive-through lane. I received the standard pharmaceutical greeting from the speaker and said something like, “I’m picking up yet another prescription for Licensed to Blog.” The drug-giver on the other side of the thick glass typed in some fun words/numbers on the keyboard, looked puzzled (never a good sign) and voiced through the crackly speaker, “Do you happen to have a new insurance card?” You can guess where it went from here. I no longer seemed to have valid insurance. The medicine would be something like four billion dollars without it.
I returned home an eternity later after encountering a sudden storm with lots of exciting lightning bolts landing nearby and crippling traffic problems on the first two routes that I tried. Eventually, I reached the vice president of my now former employer, who was absolutely mortified to find out that no one in the company had informed me that I had been terminated two weeks earlier. (I have been on FMLA due to the crazy swelling that I have boringly detailed in quite a few blogs on this site, and they decided they had waited long enough for me to get better.) I want to add here that I completely understand the termination. The doctors have not been able to pinpoint exactly when I would have been healthy enough to return to that job again. However, after almost 7 years in very good standing and a with a fine reputation in the schools and community agencies that I visited for my job, my bosses neglected to let me in on the secret firing. From what I was able to gather, neither of the primary bosses wanted to be the one to tell me, and each thought the other was doing it. Jason is more professional than that.
I am not shedding any tears over the loss of this job. There had been many recent changes far too boring to mention here, and the office had even been moved to a different town. Still, I had never been fired before in my life, and it leaves kind of a “pit in the stomach” feeling.
More importantly, I had no idea that I could have spent the last two weeks working on Cobra to keep my insurance as up-to-date as possible. (The notification is apparently “in the mail” but has not yet arrived.) So, there I was, needing one of my anti-kidney-rejection medications and scheduled to see a new specialist in St. Louis in three days without any valid insurance.
Back to the vice president. She worked her tail off yesterday afternoon to insure that I would, at least temporarily until the Cobra kicks in, be officially back on the insurance as of Monday morning so that the St. Louis appointment will not be affected and medication can be obtained without taking a 2nd mortgage. She also tried to purchase a few days’ worth of my medication for me on the company credit card. I believe there will be an angry meeting or two next week about the proper process of letting someone know they are fired.
Things would have been much clearer if I had been working for Donald Trump.
Or this guy
Comments : 28 Comments »
Tags: fired, friday the 13th, insurance sucks, it's got a death curse, jason, ralph from friday the 13th, trump
Categories : business, health, life, personal, Uncategorized, work
For whatever reason, the fine kidney doctor people at Vanderbilt have never called me or my local doctor back with an appointment time. I tried calling again yesterday and left a message. Those of you who have read these tedious posts about my freakish swelling/discoloring/general deterioration know that I was waiting for an appointment with a specialist there while also awaiting skin biopsy results.
The bad news: No appointment with Vanderbilt. Maybe they just don’t like me. I’ve never done anything to them – honest. (Sure, I pull for my Bengals whenever they play the Titans, but that’s it.) Maybe it’s for the best. They might be really mean there.
(DISCLAIMER): In no way does this photo represent the average doctor at Vanderbilt. Generally, they do not walk around in bloody garments nor do they drill holes in people unnecessarily. However, some staff at Vanderbilt (such as the people working in the gift shops) do tend to wear blood-soaked scarves.
The good news (and it’s pretty good!): The skin biopsy confirmed (or at least strongly indicated) that this problem is a reaction to some medication that I take/took and not a weird, undiscovered disease. In addition to that evidence, a kind reader of these blogs sent me some information that indicates a very few kidney transplant recipients have had this sort of reaction when they take Rapamune. (As indicated in a previous post, I stopped taking Rapamune about a month ago.) The information also indicates that it may take 3 to 6 months after stopping the Rapamune, as opposed to a couple of weeks, before it gets better. If I understand it correctly, something bad happens (for lack of a more medical-sounding phrase) to the lymphatic system, but most of the people did eventually get better. So, hopefully I am on the right track and will see some results in the next couple of months. Also, my doctor has given up on Vanderbilt and is sending me instead to a kidney specialist in St. Louis at Barnes Hospital. I now have an actual appointment, and it is in mid-June.
In the meantime, I’ve grown to love my big fat purple swollen parts. I’ve named my abdomen “Big Lenny” and my leg and foot “Jake and the Fatman.” I’m also keeping busy corrupting my toddler daughter in the following ways:
- Teaching her to sing “The Boys Are Back in Town” – she insisted on listening to it three times in a row today on the way to daycare
- Teaching her to put her hands in the air and say (with a terrible and probably offensive Italian accent), “It happens!” whenever something bad occurs, such as a drink spill. I look forward to hearing that she has done this at daycare at the appropriate time of spillage
- Watching “Whammy!” on the Game Show Network whenever possible. I’m wondering if she’s the only two-year-old in the nation who says (in her best game show announcer voice), “It’s TOOOODDDDD NEWTON!”
Thanks again to family/friends/readers who have been so supportive. This is especially true of my wife, Allison, who continues to handle the stress of this situation like a trooper. I’ll keep you posted. Anyone who doubts that can just take a closer peek at my blog and the ridiculous fact that there are now NINE posts on this subject. Sheesh, when will it ever end?? Madness, I tell you. Finally, anyone who has been wondering what I look like as a purple, swollen version of my old self, here you go, but it’s not pretty:
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Tags: blood soaked doctor, Boys Are Back in Town, for whom the swell tolls, Todd Newton, Vanderbilt where have you gone, Whammy
Categories : family, health, humor, humour, kidney transplant, life