One Screwy Year Later

29 01 2010

I’m no blog expert, but I’m pretty sure it’s poor blog management when you “disappear” and pen nothing new in three months, six months, nine months, or (choking gasp) nearly one full year.  I have been charged with the following offenses:  Blog abandonment, neglect of a diary-like webspace, and being a blog-block.  I am here to readily admit to being guilty of these crimes, which are considered felonies in the justice system of the blogosphere.  Unsure of the punishment I deserve, I face you, the jury and give the following defense:

A conglomeration of events occurred, causing my creative energy to be squelched.  Some of you may remember that I was chronicling the mystery swelling that was wrecking my physical health.  (Unfortunately, it is still undiagnosed and is not improved, but I am dealing with it and currently trying some extreme dieting ideas to try to pinpoint the problem myself).  At some point, there simply were no more words to say about it and no good news to report.  I didn’t want the blog to be a wallowing pity party, and it was becoming clear that there was not a solution coming any time soon.  That was event number one.

Around a year ago, my then wife decided that she could not handle my illness any longer and informed me she had filed for a divorce.  There were some signs (big ones, actually), but it was still a shock.  I certainly felt betrayed.  That was event number two, which actually counts as about one million events rolled into one since I was worried about what this would do to my daughter, custody issues, quickly finding a new house, selling ours, figuring out how to afford health insurance, etc.

I’ve certainly thought about my blog since then, but I just didn’t know what to do with it.  I considered deleting it.  I considered moving some of the past entries into a brand new blog.  Most of all, I just couldn’t stomach coming to it.  Until now.  I am ready.  I love my new house.  My daughter is incredibly inspiring (I do have co-custody and have her half the time), and I am a happy person at peace (except for the health issue, of course).  My faith is strongly intact.  I decided to keep the blog the way it was, sans a couple of “couple” pictures and some obvious updates that were needed “about me” in light of the situation.  I could go back and delete any entries where I praised my wife or that sort of thing, but the reality is that whatever I wrote at that time was the truth in my world at that moment so I’m leaving it alone.

So I guess I’m back in case there are two or three people out there who give a crap whether this blog exists or not and are willing to forgive my neglect instead of tossing me in blog solitary confinement.  By the way, this will not be a blog to rip my ex.  She’s a good mother; that’s all that matters to me about her anymore.  We’re on friendly terms.  I’ve chosen for the sake of my daughter and my own peace of mind not to be bitter.  That will be the last said about that by me.

My daughter, nearing kindergarten age, seems to be taking everything in stride.  I am very thankful for this.  She is the light of my being, and I never want to see her hurt.  She is currently obsessed with the idea of me marrying Trish from the television show “Clean House.”  At least she seems to have good taste!  Oh, and my daughter just asked me to be her Valentine.  Life is beautiful.

It’s good to be here and to get reacquainted with you.  Hi, I’m Matt.





A Swell(ing) Journey: Part VIII No Resolution

1 05 2008

I had hoped to be posting a “resolution” by now. Sorry for the delay: 1. I’ve been in a waiting game to see if medication changes would help or even solve the swelling situation. 2. Unfortunately, there is no resolution to post because it’s not better.

Some of the swollen skin is turning more reddish colors than the azaleas that are blooming around here. The local doctor today stated: “This is the most unusual thing I’ve seen. We can’t let it go on like this.” He suggested I head to Nashville and Vanderbilt University to see a specialist. I whole-heartedly agreed. I won’t know for a day or so when that will be. I’m starting to think I need a tour bus. Then again, I don’t think ghastly swollen guys traveling around to see doctors would draw groupies like rock bands do.

In the meantime, Doc took a skin biopsy today, and the results will hopefully come Monday. That may at least give a hint as to what might be going on, and was an interesting little process. It was sort of like when lawn care guys aerate your yard by taking little plugs out of the yard/soil, except this time, it was a small circle of flesh being removed from my leg! It really didn’t hurt much and was quick, but the sucker sure took its sweet time before it stopped bleeding! There is still some hope that it could simply be some sort of weird medication reaction, but he mentioned the possibility of a few scarier things today. No need to speculate or go into those at this point.

On a positive note, he again spent a great deal of time with me and seemed optimistic about the people at Vanderbilt. He said they’ve pretty much seen every odd sort of ailment there is and very well could identify the problem. For those of you out West or East, Vanderbilt is kind of the “Harvard of the Midwest.” Also, he was adamant that he would send all the required documentation to the insurance company that runs my short-term disability policy (they had gotten a bit pickier, shall we say, about extending my benefit a while longer, but his documentation should solve that little stressor.)

Anyway, I wish I had some funny, upbeat, silly things to write regarding this situation. Basically, it’s getting really old, and I’m sure it is for anyone who reads this as well, but I thought it was time to post an update. I truly appreciate your thoughts, prayers, chants, candlelight vigils, voodoo rituals, tarot card readings, potato chips that look like presidents’ heads, and any magical jumping beans that might be able to predict the future. Hmm, I may have jumped the shark there. One thing’s for sure; about half my body has.





A Swell(ing) Journey Part VI

11 04 2008

Never has finding out parts of your body are functioning normally been so depressing. The latest labs are back, and, you guessed it, they are normal. Normal thyroid. Normal blood markers that could have otherwise pointed to vasculitis. Normal kidney. Normal liver. Normal heart. Normal lungs, blah, blah, blah.

If nothing else, I’m finding out that I’m very healthy. Oh yeah, except for this freakish swelling that is keeping me from being able to live normally.

Okay, enough with the whining. I’m not sure what’s next. I’m starting to hear my late mom’s voice in my head. “Phooey on the doctors. If it was me, I’d just ignore the swelling and go back to doing what I want to do.” She would have, too. I’m thinking I’m getting nearer and nearer that point. Of course, I’ll need some different-sized shoes, pants, etc. I need to surf the net. Maybe there is a hip store called Swellwear. I’m hoping they have stuff that will make you look cool, even when you have one leg and foot that is 3 times the size of the other and an abdomen that is puffed up like milk-soaked Corn Pops. Maybe if I can’t get back to work soon, I can design this type of clothing for a living. The motto for my website will be: Go to Swell. Paris Hilton might be interested in funding it.

I’m sure my wife is starting to get concerned about my inability to return to work. This is not the type of free-loading I had in mind when I married a soon-to-be a CPA. I pictured a lot of tennis rather than cool-water bath soaks and support hose on my leg. And who wants to stay home all day if you might not be able to afford cable, internet, and salsa-flavored Sun Chips? (It’s not really quite to that point yet…for those of you who might worry.) Maybe this not working thing is not all it’s cracked up to be.

In all seriousness, though, I have been blessed with some extra time with my two-year-old (who just tried to physically remove me from the computer because she would appreciate some “chocolate in the milk” she is holding). It is nice not to have to stress about getting her to daycare and then myself to work on time. I’ve been able to read books to her, wonder in the mystery that is the kids’ tv show called Yo Gabba Gabba, and play hide and seek. My only complaint about this? It’s very difficult to find a hiding place that will conceal my damn foot.

Yo Gabba Gabba. (My abdomen looks similar to the pink character’s.)





Quick Update

8 04 2008

The doctor I’m working with currently seems confident he can find the cause of the swelling/irritation.  After a long meeting with him today, he had blood drawn and is checking primarily for vasculitis or thyroid issues.  He thinks he’ll have results on Thursday and will call me.  Nothing else new to report.  Thanks for all the kind words.  Hopefully I’ll have something to write on Thursday about it!





A Swell(ing) Journey Part V

28 03 2008

Wednesday brought another road trip to Louisville. This time, it was to have a CT scan with contrast/dye. The previous scans were done without the contrast in an effort to avoid the dye that can be harmful to kidney patients. However, the transplant surgeon felt there was a good chance that the cause of my swelling had not yet been found because no contrast had been used.

So, I spent a 10-hour day in a hospital bed, hooked to an IV, which provided pre-dye and post-dye protection for my kidney. Despite some confusion at the hospital, the scan was completed. I received results today. The good news is, the dye seems to have done nothing bad to my kidney. The crappy, frustrating news is, this test still did NOT reveal any possible cause for the swelling.

At this point, the doctors are consulting and working on other possible causes while I hobble around like an ogre. Someone is supposed to call me Monday to tell me what to do next, which could be to see a urologist. All the “obvious” potential causes have been ruled out. I mentioned “Filariasis” to my transplant nurse during a lengthy phone conversation this afternoon. This is a weird condition I found while searching online that can cause swelling. It occurs when a human gets worms in their lymph nodes. I don’t feel like I have worms, but, hey, who knows what this is? Anyway, the nurse did not seem to think this was very likely. Her response to me: “Matt, get off the internet…now.” I did…except to write this short blog, of course. She is probably right. Upon further inspection, those worms are generally only a problem in tropical countries I’ve never visited. I guess the worms around here are not attracted to lymph nodes.





A Swell(ing) Journey Part IV (Update in comments)

14 03 2008

There may actually be an answer in sight to the crazy, severe swelling that has knocked me for a loop for the past month. A few things have transpired since Part III.

1. The MRI, unfortunately, did not discover the cause of the swelling.

2. The heavy doses of the water pill have helped, a little, to at least give me some relief and improved movement and energy. It has not been enough to be able to return to work or go back to “normal” but has been enough to allow me to do a few more things out of the house. The main problem with this, of course, is that it is just symptom relief. The other frustrating thing is that one day there will be some improvement and the next day a step back.

3. From doing my own research about a blood pressure drug that I have been taking (or more specifically, my switch to its generic version not long ago), it was determined to be worth a shot to change medications. It is POSSIBLE this is the culprit. I am still hopeful this could help, and the medication switch just happened in the past couple of days. The doctor thought it might take several days to see a difference.

4. My wife, daughter and family continue to find ways to become even bigger sources of joy and happiness, and I do not want anyone to think I am spending all of my time in despair. I have my bad moments, but, overall, life is still a splendid thing. I watched my daughter frolic and smile and even take turns on a playground yesterday in a manner that elicited a compliment from another parent, and my heart is still full from the experience.

Despite my hopes that the medication change might just fix everything, a different answer may be slowly coming to light. Today (actually just within the past hour), I received a call from the Louisville doctor’s office about my latest labs (blood was drawn yesterday afternoon). As many of you know, I received a kidney transplant (due to a kidney disease) about five years ago. The possibility that something (possibly kidney rejection) was going on with the transplanted kidney was, of course, a leading candidate as a cause for the swelling. However, lab after lab over a three-week period continued to indicate that the kidney was pumping along, happy and healthy. This prompted a barrage of other possibilities and tests (see Parts I, II, and III for more), which eventually showed healthy heart, vascular and liver function, among other things. Basically, more and more potential causes were ruled out. During this time, the doctors seemed to continue to suspect the kidney, but the labs and tests kept indicating otherwise.

Well, the labs from yesterday finally pointed to a potential chink in the armor of the kidney. The creatinine level that shows how well your kidney is cleaning out your blood, finally worsened a bit. It was worse than it has been since a couple weeks after the transplant in 2003. It was enough that the doctor wants the lab repeated on Monday.

Though kidney trouble is certainly not what I’m hoping for, it would be preferable to me to at least know what has been causing me to have a bloated lower half. Even if it’s the worst case scenario, I believe that there is possible treatment for kidney rejection, and that it does not necessarily mean immediate loss of the kidney. The labs for Monday are scheduled. Best case scenario: It is possible that yesterday’s lab was just an anomaly. It is possible that the creatinine change is due only to the fact that I’m taking the water pill, and maybe the blood pressure med switch will solve the swelling.

I will keep you posted. I will continue to appreciate your thoughts and prayers, and I will have a lot of fun this weekend with my family. I have a nephew coming to town. We’ve always been close, but he’s lived pretty far away for many years now. It will be fun to see him.

p.s. Here is an actual pic of the kidney I stole received from my sister:

It’s sad to think my own body might be attacking something so adorable.





A Swell(ing) Journey Part III

3 03 2008

The MRI was finally approved by my insurance company. I’ll be having it this afternoon. It will take a day (or maybe two) to get results and then decide what can be done. I’ll let you guys know. Thanks again for the positive thoughts.

looks like a good time!





A Swell(ing) Journey Part II

26 02 2008

I trekked to Louisville with my sister this morning (thanks again, sis) and saw a specialist about the health mystery I’m experiencing. To make a long story short, she (the doc) stated the swelling is “severe” and “serious” and consulted with several other doctors there before deciding on the next step.

The consensus is that there is a good chance the problem is one of the things that I was already tested for last week (the CT scan that was done) and that the test just did not show the problem (a possible blockage in blood flow in a vein in or around the abdomen known as the inferior vena cava). Therefore, they want an MRI done. (Apparently mine is very inferior at the moment.)

This has to be approved by my insurance company first, and that was not successful today (oh joy). A doctor from my insurance company has to contact my doctor to talk about it, and then it should be approved. I’m starting to feel important, like I can say, “I’ll have my people talk to your people…” However, I would gladly go back to being unimportant me who is able to do things like walk around. The insurance/doctor’s office conversation will hopefully occur tomorrow. Then, I can have the test done and go from there. For now, it’s back at home…and wait.

Thanks again for all the well wishes. I’ll put an update once they know what the heck this is.

“This Matt dude is messed up. He doesn’t think we can FIX THAT, does he? lol”





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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