(This is the beginning of my kidney adventure. I got high blood pressure in May of 2009, and it continued to rise after the school year ended. We moved and I started seeing a new physician in December of 2009. On Christmas Eve, I got a call from my doctor with lab results. This was how I found out that my kidneys would take me on a lifelong adventure. The following post was written for Facebook after my first biopsy in February 2009. It contains some information that I now know to be incorrect (I'll include edits in purple), but I left it in to show the progress of my understanding of Chronic Kidney Disease.)
Long and technical description, if you are interested:
Here’s what I know, based on the preliminary results. We’ll have more information later this week.
The biopsy was successful, which is good. Sometimes they hit healthy tissue that doesn’t tell them anything, and you have to do the whole thing over. I have had some bleeding around the kidneys so I’m dizzy and I’m going to have to stay off my feet most of the time for a few more days until it absorbs back in. This may have caused some anemia (it actually didn't...just insanely painful muscle spasms), so we’re keeping an eye on that. My school has been really understanding and they say I can take off as much time as I need to, and make up the days later. That’s a blessing right there.
Results of the biopsy show that I have a kidney disease called mesangial hyperplasia, or mesangial proliferative glomerulonephritis. (That's more a description of what they saw, it's not really the name of any specific disease. So Glomerulonephritis is what we're calling this for lack of better term.) This is a less common form of kidney disease. (Dad was even stumped as to what it was…mark your calendars!) Fewer than 10% of kidney patients have this type, so it is not as well researched as some of the others. It is aggressive, and I have not had it very long. I have global sclerosis (scarring) on about 45-50% of glomeruli (filtering bits) and this is not reversible. This is some form of auto-immune issue that has my system turning on itself. The most likely treatment will be 3-6 months of immunosuppressant therapy which could stop the progression. (We decided there was not enough reason to try that since we had no way of knowing if it would work. But more on that later.) Best-case scenario, this will go away with treatment and I won’t lose any more kidney function. (Hah!) Worst-case scenario, it will slow down but not stop, which will eventually lead to dialysis and transplant. (Yeah...) My doctor was very clear that at this point, I should definitely not get pregnant (not that we were planning to…) because of the added strain this would cause to my kidneys. Whether or not I will ever be able to carry a pregnancy has yet to be determined, and we have no reason yet to NOT be optimistic on that. (There's a lot more on that.)
This is not kidney failure! It could lead to kidney failure untreated, but luckily we caught it and will get treatment for it quickly. I’m going to get a second opinion in the Houston Medical Center (in addition to the first one from the UT Medical School in Dallas) and we will decide on the best course of treatment in the next few weeks. Until then we are trying to get my blood pressure under control and keeping an eye on my anemia (which didn't actually show up for another year).
There isn’t really a known cause other than random chance, but those of you who are related to me should probably take any change in blood pressure seriously. (I guess that is just a good idea anyway.) I am very thankful that the Waco doctor I randomly chose out of the phonebook was so thorough in doing the tests to catch this right away when I came in for my new patient check-up.
As for me, I’m a reasonable amount of worried, but I think I’m handling it pretty well. I know this will be ok, even if it is a little scary and very inconvenient and expensive in the process. There are many worse things to have. I feel fine (other than the biopsy related stuff) and I am switching to a much healthier diet, which I probably should have done anyway. I appreciate y’all’s concern and prayers and I’ll keep you posted as I get more information.
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