It's been awhile since I've posted, but there's a reason.
My nephrology appointment was March 25, and it was sobering. My doctor reminded me that there still isn't a clear picture of what's going on with me. I left that day with a sheet of paper that listed six diagnoses related to my visit. (I added the definitions below for clarity. All are from the Free Medical Dictionary.) The sheet read:
Diagnoses Associated With This Visit:
1. Glomerulonephritis - Primary (Renal disease characterized by the inflammation of the glomeruli)
NOTE: IgA is a form of glomerulonephritis
2. Proteinuria (The presence of excessive amounts of protein in the urine)
3. Hypertension - Chronic (Abnormally elevated blood pressure)
4. Gammopathy (A disturbance in the synthesis of immunoglobulins; proteins having antibody activity increase greatly in the blood)
5. Fatigue (Physical or mental weariness)
6. NASH - Nonalcoholic Steateohepatitis (Fat deposits in the liver and inflammation not due to excessive alcohol abuse)
There was also a list at the bottom of the sheet called "Problem List" that had the above plus:
1. Undifferentiated Connective Disease Disease (An early stage of a connective disease disease, in which the predominant organ of involvement is not yet manifest)
It was enough to make my head spin.
The doctor ordered 22 tests that day, and soon it was time to play the waiting game again.
I hate waiting for test results. And yet this seems to be the new rhythm
of my life. Take some tests, wait anxiously, get confused by the
results, and then undergo more tests. Test. Wait. Repeat. The tests always seem to lead to more questions -- and more questions = more tests. And it's really getting old.
So I think I needed to be away from the blog for a bit. I just couldn't bring myself to give this update and then have people ask questions that I couldn't answer, no matter how badly I wanted to provide answers.
What have I been up to since my last post? There's been a robot diversion out east. I watched a lot of basketball games (Go Blue!). There was a field trip to The D with a dear friend. And about two weeks of a serious bug/illness that I can't seem to shake.
But now I'm back. Next up is a kidney biopsy (my second) that has yet to be scheduled.
Let the journey continue.
Wednesday, April 24, 2013
Monday, April 22, 2013
Sunday, March 10, 2013
Life Imitates Hoops
Indiana beat the University of Michigan 72-71 today in men's basketball to win the Big Ten Championship. As a UM fan, I was disappointed in the outcome -- but what really struck me was how much this game reminded me of my journey with kidney disease. I'll spare you the obvious sports cliches ("it's not over til it's over"), and I won't provide a complete statistical breakdown of the game. Instead, I give you:
Five Ways Today's IU-UM Game Reminded Me of Life With Kidney Disease
1. It Doesn't Always Matter Who Your Parents Are
Glenn Robinson III went 1-for-2 from the free throw line with :52 left and Tim Hardaway Jr. missed the front end of a one-and-one with :38 left. It didn't matter that both have fathers who played in the NBA. These moments were all about the sons. It was time for the sons to deliver, and the ball didn't care about what their fathers had accomplished.
How does this relate to kidney disease? Genes only mean so much. While some types of kidney disease are hereditary, mine (IgA nephropathy) is not. As far as I know, I don't have any relatives who have kidney disease. I had one cousin with diabetes (RIP, Brian), but that's all I'm aware of. Diabetes and high blood pressure are two major causes of kidney disease. My father didn't have kidney issues. My mother doesn't have kidney problems. This disease is all about me.
2. You Can't Do It Alone
I cringed several times when UM came down the court and immediately jacked up a shot. I'm all for being aggressive, but there's a reason each team gets five players on the court. Pass the ball, force the defense to move and defend, and increase your chances of finding an open player.
I am also guilty of trying to do too much myself. I sometimes forget that I have a big team of doctors, alternative medical specialists, family and friends, all working with me to keep me healthy. I get in trouble when I don't lean on others and let people help.
3. You Have to Handle Pressure
UM led by four points with :52 left but failed to score a basket the rest of the way -- going just 1-for-4 from the free throw line and then missing two layups in the final seconds. A win would have meant a share of the Big Ten title (along with Indiana, Michigan State and Ohio State). Instead, they lost, and Indiana won the title outright.
Living with kidney disease also means having to handle pressure. Maybe stress is a better word, but the point is the same. Having a chronic illness is difficult, and it takes a tremendous amount of composure to stay focused. You have to execute the medical plan and not get distracted by all that life throws at you.
4. Momentum Swings Come and Go and Sometimes Don't Make Sense
Basketball is a game of runs and momentum. Case in point: IU led 10-3 to start the game, only to get outscored by UM 12-0 over the next few minutes and fall behind.
My life with kidney disease definitely mirrors this. At times, I'm able to put together a nice little streak of momentum, and everything seems to fall into place. Then, suddenly, the disease takes it turn and dominates me. I can't always predict when this is going to happen, or how long it will last. My goal is to keep fighting long enough so that when momentum turns again, I will be ready to capitalize.
5. You Often Don't Get Out What You Put In
I can't imagine how much time UM put into preparing for this game, only to come up short. Practice. Film sessions. Walk thrus. But in sports, one team wins and the other loses. That's just how it goes.
My kidney disease is autoimmune, so it's like my body has a mind of its own. I can do everything the right way -- diet, exercise, rest, manage stress -- and my tests will still show that the disease is progressing. It can be extremely frustrating. But there are no guarantees in life. All I can do is try my best.
Five Ways Today's IU-UM Game Reminded Me of Life With Kidney Disease
1. It Doesn't Always Matter Who Your Parents Are
Glenn Robinson III went 1-for-2 from the free throw line with :52 left and Tim Hardaway Jr. missed the front end of a one-and-one with :38 left. It didn't matter that both have fathers who played in the NBA. These moments were all about the sons. It was time for the sons to deliver, and the ball didn't care about what their fathers had accomplished.
How does this relate to kidney disease? Genes only mean so much. While some types of kidney disease are hereditary, mine (IgA nephropathy) is not. As far as I know, I don't have any relatives who have kidney disease. I had one cousin with diabetes (RIP, Brian), but that's all I'm aware of. Diabetes and high blood pressure are two major causes of kidney disease. My father didn't have kidney issues. My mother doesn't have kidney problems. This disease is all about me.
2. You Can't Do It Alone
I cringed several times when UM came down the court and immediately jacked up a shot. I'm all for being aggressive, but there's a reason each team gets five players on the court. Pass the ball, force the defense to move and defend, and increase your chances of finding an open player.
I am also guilty of trying to do too much myself. I sometimes forget that I have a big team of doctors, alternative medical specialists, family and friends, all working with me to keep me healthy. I get in trouble when I don't lean on others and let people help.
3. You Have to Handle Pressure
UM led by four points with :52 left but failed to score a basket the rest of the way -- going just 1-for-4 from the free throw line and then missing two layups in the final seconds. A win would have meant a share of the Big Ten title (along with Indiana, Michigan State and Ohio State). Instead, they lost, and Indiana won the title outright.
Living with kidney disease also means having to handle pressure. Maybe stress is a better word, but the point is the same. Having a chronic illness is difficult, and it takes a tremendous amount of composure to stay focused. You have to execute the medical plan and not get distracted by all that life throws at you.
4. Momentum Swings Come and Go and Sometimes Don't Make Sense
Basketball is a game of runs and momentum. Case in point: IU led 10-3 to start the game, only to get outscored by UM 12-0 over the next few minutes and fall behind.
My life with kidney disease definitely mirrors this. At times, I'm able to put together a nice little streak of momentum, and everything seems to fall into place. Then, suddenly, the disease takes it turn and dominates me. I can't always predict when this is going to happen, or how long it will last. My goal is to keep fighting long enough so that when momentum turns again, I will be ready to capitalize.
5. You Often Don't Get Out What You Put In
I can't imagine how much time UM put into preparing for this game, only to come up short. Practice. Film sessions. Walk thrus. But in sports, one team wins and the other loses. That's just how it goes.
My kidney disease is autoimmune, so it's like my body has a mind of its own. I can do everything the right way -- diet, exercise, rest, manage stress -- and my tests will still show that the disease is progressing. It can be extremely frustrating. But there are no guarantees in life. All I can do is try my best.
TGI March
Hello, March. So nice to see you!
March is National Kidney Month, and organizations like DaVita and the National Kidney Foundation of Michigan have been tweeting stats and helpful information at a dizzying pace. Most shocking to me is that 1 in 9 adults in the state of Michigan (and 1 in 10 adults nationwide) have chronic kidney disease -- although most are unaware because kidney disease offers very few visible clues.
Early detection is the key to helping slow down the progression of the disease.
My hope is that all of my friends and family will ask their doctor for a kidney screening in 2013. Will you do that? Will you ask for a screening the next time you are at the doctor?
March is National Kidney Month, and organizations like DaVita and the National Kidney Foundation of Michigan have been tweeting stats and helpful information at a dizzying pace. Most shocking to me is that 1 in 9 adults in the state of Michigan (and 1 in 10 adults nationwide) have chronic kidney disease -- although most are unaware because kidney disease offers very few visible clues.
Early detection is the key to helping slow down the progression of the disease.
My hope is that all of my friends and family will ask their doctor for a kidney screening in 2013. Will you do that? Will you ask for a screening the next time you are at the doctor?
Saturday, January 26, 2013
Chrysanthemum Blossoms
My blood test results are back, and everything seems to be status quo. The doctor ran eight tests and all of my results fell within normal ranges. There were several deviations from September -- some were higher, some were lower -- and that led me to Google and to try and figure out what these fluctuations may mean. I am the poster child for cyberchondria. I am Sheldon Cooper (Big Bang Theory), having abdomen pain and coming to conclusion that I'm dying due to accidental ingestion of chrysanthemum blossoms. (Watch Video)
I have no idea why I obsess and try to research everything, but yet there I was, typing in test names and trying to make sense of test results. And then I thought of Sheldon, and I realized how ridiculous I was being, and I stopped.
My doctor never called, so I'm not worried. :)
Sheldon Cooper appendix
I have no idea why I obsess and try to research everything, but yet there I was, typing in test names and trying to make sense of test results. And then I thought of Sheldon, and I realized how ridiculous I was being, and I stopped.
My doctor never called, so I'm not worried. :)
Sheldon Cooper appendix Sunday, January 20, 2013
Trending
I was told that I'm trending. That would be kind of cool if we were talking about Twitter.
It would also be a miracle, since I have 20 followers and tweet about once every 18 days.
The quote was "you're trending up" and it was from my nephrologist, who called to discuss my latest protein/creatinine urine ratio. She then ordered more labs, and I had blood drawn on Jan. 18. I expect to have those results early in the week.
What does this mean? The goal all along has been to try and slow down the progression of my disease. The increased protein/creatinine urine ratio shows that the current course of action isn't as effective as the doctor and I had hoped it would be. The next treatment step would be something more aggressive, like suppressing my immune system -- and that wouldn't be done without another biopsy.
Looks like biopsy #2 will soon be a reality.
It would also be a miracle, since I have 20 followers and tweet about once every 18 days.
The quote was "you're trending up" and it was from my nephrologist, who called to discuss my latest protein/creatinine urine ratio. She then ordered more labs, and I had blood drawn on Jan. 18. I expect to have those results early in the week.
What does this mean? The goal all along has been to try and slow down the progression of my disease. The increased protein/creatinine urine ratio shows that the current course of action isn't as effective as the doctor and I had hoped it would be. The next treatment step would be something more aggressive, like suppressing my immune system -- and that wouldn't be done without another biopsy.
Looks like biopsy #2 will soon be a reality.
Saturday, January 12, 2013
You've Got Questions
I thought I'd compile a list of some of the questions I've been asked over the past month:
Q. When are you going to update the blog?
A. I’m doing so right now! Follow along!
Q. Does a quiet blog = a busy life?
A. Nope. A quiet blog = a dead home computer. It’s about 1995 in my house right now.
Q. When are your next medical appointments?
A. My next rheumatology appointment is Feb. 4 and I see my nephrologist on March 25. But I'm going to U-M for lab work on Monday, Jan. 14. This is to monitor the amount of protein in my urine and to see if the higher dosage of blood pressure medicine is making a difference. I'm very curious to see the results.
Q. How are you feeling?
A. In a word, encouraged. My energy level is the highest its been in a long time. I think the alternative therapies (acupressure, acupuncture) are contributing to my improved overall health. I am sleeping well and have learned the art of getting enough rest.
Q. Are you running?
A. No. I go for walks every day and have a new pedometer to track how much walking I do at work every day. But that's about all for now.
Q. Do you think you'll try another 5K?
A. Definitely. I haven't chosen one yet but will look for a race in June or July. That will give me enough time to prepare. The hard lesson from my September 5K was that I'm not the athlete I used to be, and running a 5K is fairly taxing on my body. So I want to make sure I train properly. I could use training partners so if anyone wants to run with me this spring, please let me know.
Q. Are there any National Kidney Foundation of Michigan events coming up?
A. There's a Kidney Walk in Grand Rapids on April 28 that I'm thinking about doing. I will be making a decision in the next month or so and, if I'm participating, I'll announce it on the blog.
Q. Why do you park in a driveway and drive in a parkway?
A. Dad? Is that you?
Q. When are you going to update the blog?
A. I’m doing so right now! Follow along!
Q. Does a quiet blog = a busy life?
A. Nope. A quiet blog = a dead home computer. It’s about 1995 in my house right now.
Q. When are your next medical appointments?
A. My next rheumatology appointment is Feb. 4 and I see my nephrologist on March 25. But I'm going to U-M for lab work on Monday, Jan. 14. This is to monitor the amount of protein in my urine and to see if the higher dosage of blood pressure medicine is making a difference. I'm very curious to see the results.
Q. How are you feeling?
A. In a word, encouraged. My energy level is the highest its been in a long time. I think the alternative therapies (acupressure, acupuncture) are contributing to my improved overall health. I am sleeping well and have learned the art of getting enough rest.
Q. Are you running?
A. No. I go for walks every day and have a new pedometer to track how much walking I do at work every day. But that's about all for now.
Q. Do you think you'll try another 5K?
A. Definitely. I haven't chosen one yet but will look for a race in June or July. That will give me enough time to prepare. The hard lesson from my September 5K was that I'm not the athlete I used to be, and running a 5K is fairly taxing on my body. So I want to make sure I train properly. I could use training partners so if anyone wants to run with me this spring, please let me know.
Q. Are there any National Kidney Foundation of Michigan events coming up?
A. There's a Kidney Walk in Grand Rapids on April 28 that I'm thinking about doing. I will be making a decision in the next month or so and, if I'm participating, I'll announce it on the blog.
Q. Why do you park in a driveway and drive in a parkway?
A. Dad? Is that you?
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