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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31 responses

20 02 2008
Meta-blogging Vol. 2 « That’s What She Blogged

[…] It’s been a pretty stressful week at home.  My husband discusses his mystery ailment here.  Let’s just say, it’s not so […]

20 02 2008
Susie

Oh, Matt, how distressing. I’m sorry you’re having to go through this. I know a little something about mystery illnesses and the accompanying frustration and anxiety. I join you in praying for quick, clear answers and something very treatable. Be well, I pray.

20 02 2008
Bob (your bro)

Now you’ve got me hooked on your blog, Matt, because I must find out what happens next. Me and my diabetes are nothing in comparison. I learn from your persistent gratitude. Thanks.

21 02 2008
Sherri Cornelius

Matt, I’m also inspired by your gratitude. Praying for your quick and easy recovery.

21 02 2008
Brianmpei

Praying for this chapter to wrap up with a happy ending – and less drama than Dr. House usually inspires.

21 02 2008
Leah

Matt, mom sent me the link to your blog today. I am so sorry you are having these health problems. I also have faith in your ability to bounce right back. By the time I get to IN you will probably already be back on that tennis court 🙂 I love you, you are in my thoughts. Hang in there and let us know if there is anything we can do to help. I’ll be staying tuned…
XOXO Leah

21 02 2008
eleanorstrousers

Well, if its a House-type disease, at least you can rule out lupus. On House it’s never lupus. Hopefully they can figure this out asap and it will go away as quickly as it came.

21 02 2008
allison312

Matt, thanks so much for sharing this. You are very brave. I’ll keep both you and Allison in my prayers. 🙂

21 02 2008
Corina

Wow! Nothing like reading this to make me appreciate the bit of health I am enjoying. Sure I have problems but they are so minor compared to yours.

I hope good things come from the test results. I’ll check back.

21 02 2008
jenefur

Eww, not fun. Take care of yourself, and I’ll be praying for you!

21 02 2008
romi41

It was impossible to take my eyes off the screen as I read this; I’m thinking good thoughts for you; I hope you get the peace of mind you deserve as soon as possible…in the meantime more rest now, for more tennis later 😉

22 02 2008
Taoist Biker

Wow, man, that really sucks all the way around. I’ll try to send you some good vibes or something.

22 02 2008
indianamatt

Thanks for all the thoughts and prayers. Nothing new to report as of Friday evening. I’m going to see specialists in Louisville Tuesday. If it gets worse, I’m planning to quit my job (that I haven’t been able to do this week anyway) and apply to be one of the floats in the next Macy’s Thanksgiving parade. My feet look like balloons already!

23 02 2008
Susie

Thanks for updating. I’ve been checking on you.

Well . . . it’s good to have a plan 😉 (And a sense of humor.)

24 02 2008
Stacey

Wow, you’re being very brave about all this. I’m a total spaz at the first sign of weird illness symptoms. I hope they figure it out soon and you can start feeling better!

25 02 2008
pamajama

Well, it’s nice that there’s more of you for your bewitching wife to love . . . but this is probably not what you were hoping for. Perhaps you could eat a lot of the stuff you enjoy while you’re gaining weight anyway? Hot fudge, chocolate chip cookies from the oven, pecan pie? Sending happy thoughts & prayer your way.

26 02 2008
A Swell(ing) Journey Part II « Licensed to Blog

[…] 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 […]

28 02 2008
Paperspoons

Oh wow, how did I miss this entry! I’m sending you lots of well wishes!

9 03 2008
Black Coffee & Bourbon

I hope your doctors can figure out what is wrong! You’ll be in my prayers.

9 03 2008
One Click Away From Resigning « That’s What She Blogged

[…] have been my last straw.  I’ve had a stressful couple of weeks…Matt’s health situation and my overtime hours are starting to get to me.  I scheduled the budget meeting at a […]

14 03 2008
Amber

Has anyone mentioned the possibility of lymphedema? Many physicians don’t understand this condition and so it often goes undiagnosed. You may want to ask them about this possibility as they search for a proper diagnosis. You can learn more about this condition at http://www.lymphnet.org/. Best wishes as you seek the answers.

14 04 2008
WC

Just read all your entries about the swelling. Are you on Rapamune (sirolimus)? I may be trampling blog etiquette but email me. I am a pharmacist and read charts all day trying to find answers.

14 04 2008
A Swell(ing) Journey: Part VII « Licensed to Blog

[…] 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 […]

3 06 2008
Jeanne

My husband had a kidney transplant in Feb 06 (I donated mine)…. he has started severe swelling in his upper legs, stomach etc over the last few days…I am up now researching this and found your blog…. we are calling the doctors in the morning… I was wondering if you have found the cause of your swelling?

2 10 2008
Plogster » Blog Archive » A Swell(ing) Journey Part II

[…] 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” […]

2 10 2008
Plogster » Blog Archive » A Swell(ing) Journey: Part VII

[…] 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 […]

2 10 2008
2 10 2008
Plogster » Blog Archive » One Click Away From Resigning

[…] Wednesday may have been my last straw. I’ve had a stressful couple of weeks…Matt’s health situation and my overtime hours are starting to get to me. I scheduled the budget meeting at a McDonald’s […]

3 10 2008
Taoist Biker

What the hell?!? This Plogster whatchamacallit is totally passing Allison’s blog off as his/her/its own!!!

7 01 2009
Userstudy blog » Blog Archive » A Swell(ing) Journey: Part VII

[…] 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 […]

16 01 2009
Userstudy blog » Blog Archive » A Swell(ing) Journey Part II

[…] 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” […]

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