This one's for my "Up in the Air" siblings Dawn, Rob and Ryan:
Saturday, March 31, 2012
Thursday, March 29, 2012
Kidney Connections
It's taken me a long time to accept that I have kidney disease. I'm still not happy about it, but a few weeks ago I decided to stop being angry and instead focus all of my attention on improving my life. I've transitioned from "Why me?" to more important questions, like:
How can I help keep myself healthy?
What can I do to educate myself and others?
Starting this blog was the first step in this journey. I had been very reticent when it came to my health, as I didn't want anyone to know that something was "wrong" with me. I'd always identified as an athlete -- as someone who could just pick up and run a 1/2 marathon without training (which is something I did as recently as three years ago). The last thing I wanted anyone to know was that those days are over.
And I definitely didn't want to admit to myself that those days were over.
That way of thinking, however, gave the disease too much power. So I've been spending a lot of time lately researching kidney disease, and I've also started to be more open about what I'm experiencing. I'm determined to be an advocate, not a victim.
So imagine how cool it was to learn that every Noodles and Co. in Michigan was donating 25% of today's sales to the National Kidney Foundation of Michigan. And imagine how cool it was to send out an email this morning to my staff and student workers letting them know, and having EIGHT of them go to lunch with me and support the cause. Just thinking about it makes me emotional.
As a bonus, I met with someone from the NKFM today and asked about support groups. I was pleased to learn that the foundation has social workers, as I really want -- and need -- to be able to connect with people who can relate to my experience.
It's starting to feel like I'm not so alone.
How can I help keep myself healthy?
What can I do to educate myself and others?
Starting this blog was the first step in this journey. I had been very reticent when it came to my health, as I didn't want anyone to know that something was "wrong" with me. I'd always identified as an athlete -- as someone who could just pick up and run a 1/2 marathon without training (which is something I did as recently as three years ago). The last thing I wanted anyone to know was that those days are over.
And I definitely didn't want to admit to myself that those days were over.
That way of thinking, however, gave the disease too much power. So I've been spending a lot of time lately researching kidney disease, and I've also started to be more open about what I'm experiencing. I'm determined to be an advocate, not a victim.
So imagine how cool it was to learn that every Noodles and Co. in Michigan was donating 25% of today's sales to the National Kidney Foundation of Michigan. And imagine how cool it was to send out an email this morning to my staff and student workers letting them know, and having EIGHT of them go to lunch with me and support the cause. Just thinking about it makes me emotional.
As a bonus, I met with someone from the NKFM today and asked about support groups. I was pleased to learn that the foundation has social workers, as I really want -- and need -- to be able to connect with people who can relate to my experience.
It's starting to feel like I'm not so alone.
Tuesday, March 27, 2012
Off Balance
I used to go on summer houseboat trips with an amazing group of friends. We'd enter Lake Cumberland in Kentucky, then venture further into the lake and spend about 3-4 days on the water in Tennessee. The houseboat had a hot tub on the roof, a big slide that would dump you into the lake, a grill out on the back deck and a full kitchen. We ate like kings and queens and partied like the young people we were. It was fun, cheap, relaxing, and one of the best times of my life.
The only part I disliked was getting off the boat -- not because the trip was over, but because for about a day I still had that rocking feeling like I was on the water.
I have that rocking feeling now, although I haven't been on a boat in years.
I went to U-M yesterday and saw my primary care doctor, since I've never experienced this before and every new thing that happens causes concern. At least to me. Dr. Stutz did an exam and concluded that it was not vertigo, and nothing was wrong with my inner ear. He thinks it may be caused by a virus, since I do have some other symptoms indicative of a GI virus. Use your imagination.
Here's the tricky thing, though. Dr. Harder (nephrology) had just increased my dosage of spironolactone (diuretic) to try and reduce my proteinuria. There is a correlation between the med change and when the woozy feeling began. Dr. Stutz doesn't think the wooziness is from the meds, but concluded that the first step in figuring this out is to go back to the original dosage level and see how I feel.
Today was my first day on a lower dose. I stayed home from work and slept most of the day (see GI virus above). So this one, for now, remains a bit of a mystery. If I still feel woozy next week I'm supposed to go back and see Dr. Stutz.
The only part I disliked was getting off the boat -- not because the trip was over, but because for about a day I still had that rocking feeling like I was on the water.
I have that rocking feeling now, although I haven't been on a boat in years.
I went to U-M yesterday and saw my primary care doctor, since I've never experienced this before and every new thing that happens causes concern. At least to me. Dr. Stutz did an exam and concluded that it was not vertigo, and nothing was wrong with my inner ear. He thinks it may be caused by a virus, since I do have some other symptoms indicative of a GI virus. Use your imagination.
Here's the tricky thing, though. Dr. Harder (nephrology) had just increased my dosage of spironolactone (diuretic) to try and reduce my proteinuria. There is a correlation between the med change and when the woozy feeling began. Dr. Stutz doesn't think the wooziness is from the meds, but concluded that the first step in figuring this out is to go back to the original dosage level and see how I feel.
Today was my first day on a lower dose. I stayed home from work and slept most of the day (see GI virus above). So this one, for now, remains a bit of a mystery. If I still feel woozy next week I'm supposed to go back and see Dr. Stutz.
Sunday, March 25, 2012
U-M Study
I'm happy to share that I'm taking part in a research study at U-M. I signed all the paperwork at my visit on March 14.
Researchers are trying to develop a new urine test for diagnosing and treating people with kidney disease. The test is based on research already done at U-M that shows that a special cell in the kidney filtering system can be damaged and excreted into the urine. Researchers would now like to develop a new urine test that will pick up on this cell, thus being able to diagnose kidney issues quicker than in the past. I'm very happy to be part of this research and hope that in the future doctors will be able to catch kidney disease earlier.
My participation will involve the one thing I've gotten pretty good at: peeing in a cup!
The test will last three years, and there is a "normal" group and an "abnormal" group. I, of course, am in the latter.
The hilarious side of this was the paperwork, because it was obvious that too many lawyers get involved with this stuff. I understand the need for me to sign off on privacy issues, but there was actually a section that addressed what should happen if I get injured during the study. Injured?? I'm just peeing in a cup! Do they mean like if I fall off the toilet and hit my head? I don't get it -- but I did sign and say I would tell the researchers if I have injuries or side effects. lol
Researchers are trying to develop a new urine test for diagnosing and treating people with kidney disease. The test is based on research already done at U-M that shows that a special cell in the kidney filtering system can be damaged and excreted into the urine. Researchers would now like to develop a new urine test that will pick up on this cell, thus being able to diagnose kidney issues quicker than in the past. I'm very happy to be part of this research and hope that in the future doctors will be able to catch kidney disease earlier.
My participation will involve the one thing I've gotten pretty good at: peeing in a cup!
The test will last three years, and there is a "normal" group and an "abnormal" group. I, of course, am in the latter.
The hilarious side of this was the paperwork, because it was obvious that too many lawyers get involved with this stuff. I understand the need for me to sign off on privacy issues, but there was actually a section that addressed what should happen if I get injured during the study. Injured?? I'm just peeing in a cup! Do they mean like if I fall off the toilet and hit my head? I don't get it -- but I did sign and say I would tell the researchers if I have injuries or side effects. lol
Saturday, March 24, 2012
Labs
I'm very generic when I talk about my lab work, and that's because it's just easier to say things are "better" or "worse." There are so many tests and so many things being monitored that it would be crazy to try and explain them all.
I do, however, want to be specific about one test: protein/creatinine urine ratio. The normal range for this is 0.01-0.18. Anything above 0.18 is considered elevated and indicates something called proteinuria -- excess serum proteins found in the urine.
My results:
0.72 in April 2010
1.20 in July 2010
1.17 in February 2011
0.90 in September 2011
(Woo Hoo - see how it was trending back down???)
2.04 in March 2012
(Uh oh.)
Now that you know this is a key number that we're tracking, I can give you the ratio instead of saying "better" or "worse."
I do, however, want to be specific about one test: protein/creatinine urine ratio. The normal range for this is 0.01-0.18. Anything above 0.18 is considered elevated and indicates something called proteinuria -- excess serum proteins found in the urine.
My results:
0.72 in April 2010
1.20 in July 2010
1.17 in February 2011
0.90 in September 2011
(Woo Hoo - see how it was trending back down???)
2.04 in March 2012
(Uh oh.)
Now that you know this is a key number that we're tracking, I can give you the ratio instead of saying "better" or "worse."
Friday, March 23, 2012
Thursday, March 22, 2012
What's in a Name?
One of the most maddening things about my battle with kidney disease is that my doctor hasn't been able to 100 percent, beyond-a-shadow-of-a-doubt give an official diagnosis. For now, she's calling this:
Mesangial Proliferative Glomerulonephritis.
The medical dictionary defines this as: "Glomerulonephritis characterized clinically by the nephrotic syndrome and histologically by diffuse glomerular increases in endocapillary and mesangial cells and in mesangial matrix."
Ummmm.......huh?
It's probably easier to think about it this way:
This disease is an autoimmune disorder, but its trigger is unknown. My autoimmune system isn't recognizing my kidneys as MINE, and are thereby attacking them. The result is that my kidneys aren't filtering properly.
All of my tests (and my biopsy) have pointed toward either lupus nephritis or IgA nephropathy as an official diagnosis, but because of how my tissue samples were incorrectly stained, we can't know for sure. Well, at least until another biopsy, and let's hope that doesn't happen soon.
Does this help explain what's going on?
Didn't think so....
Mesangial Proliferative Glomerulonephritis.
The medical dictionary defines this as: "Glomerulonephritis characterized clinically by the nephrotic syndrome and histologically by diffuse glomerular increases in endocapillary and mesangial cells and in mesangial matrix."
Ummmm.......huh?
It's probably easier to think about it this way:
This disease is an autoimmune disorder, but its trigger is unknown. My autoimmune system isn't recognizing my kidneys as MINE, and are thereby attacking them. The result is that my kidneys aren't filtering properly.
All of my tests (and my biopsy) have pointed toward either lupus nephritis or IgA nephropathy as an official diagnosis, but because of how my tissue samples were incorrectly stained, we can't know for sure. Well, at least until another biopsy, and let's hope that doesn't happen soon.
Does this help explain what's going on?
Didn't think so....
After about 20 seconds of thought, I've decided to start a blog. I've imagined all of the exciting parts of my life I could share, like my hour-long commute, or maybe how I'm usually asleep by 9 p.m. every night. Instead, I'm going to use this space to talk about my kidneys. So, the next time it's 9:15 p.m. and you think, "hey, I wonder how Giffy's kidneys are doing?" -- come visit.
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