Medical update - 3/30/11
This morning I was able to meet with my nephrologist for another follow-up visit. We are currently 2 1/2 months into treatment, so the meds are finally starting to work. While my kidney function has definitely dropped over the last couple of months, going from about 40% function in January to about 15-20% function currently, things look like they have stabilized for the time being. My creatinine levels were the same today as they were two weeks ago, so that's great news! My white blood cell counts have also come up a bit, which is good because it allows us to be a little more aggressive with the oral chemotherapy medications.
The standard treatment for Wegener's has 2 parts - steroids and oral chemo. The steroids offer a more acute solution, acting quickly to stop the progression of the damage. The chemo works more slowly to assist in reaching remission. If the chemo meds can be increased, and my body can tolerate the medicine, then the steroids should be able to be reduced in the next 2-4 weeks. As I mentioned in my previous posts, I have come to terms with the fact that transplant and possible dialysis are in my future.
Today the doctor and I talked about short and long term options. The best possible long term outcome would be for my kidney function to improve, allowing me to avoid dialysis and transplant. If we can get my kidneys back to 30-40%, like they were in January, then I can probably avoid transplant for many more years. The odds of that option happening aren't great, but it's not impossible. The type of kidney damage I have is typically irreversible.
The worst case scenario would be for my kidneys to continue to get progressively damaged to the point that I need dialysis in a few short months, eventually leading to transplant. Dialysis in that case might be temporary or long term. However, the longer a patient is on dialysis, the less likely he/she is to have a successful transplant, and the lower the life expectancy.
Of course, we could also have a blended outcome, where we're able to get my kidneys to stabilize, but we need to plan for transplant in several years. As my doctor stated, I need my kidneys to last me another 70-80 years, so 15-20% function isn't much to work with for that long of a time span.
One thing I hadn't thought about before today was the role that Wegener's plays in this. In order for me to get a transplant, I need to have been in remission for 1-2 years. So, that means that even if I had a brand new kidney right here, right now, ready for transplant, and I met all criteria with the perfect weight and blood levels, I still wouldn't be able to get a transplant for another 1-2 years until I'm in remission.
I realize it may seem strange to be talking about transplant before dialysis, especially since we usually think of transplant as a last resort. However, patients that go straight to transplant, without ever having dialysis, tend to have a longer life expectancy and better results overall. Dialysis is there to help keep me alive while I wait for transplant. I'm at the point now that I realize that at some point, I will have to get a new kidney. The question will simply be when...
So, in the meantime, we're working on getting this bad boy in remission. It feels a bit like wrangling a wild beast or trying to stop a runaway train, but at least I don't feel like I'm being bucked off that horse yet. I'm also down 14 pounds, which my doctor found very impressive, especially considering the massive amounts of steroids I'm taking. My blood sugar level was elevated last time as a result of the medications, so I'm working on monitoring that and my blood pressure. Also, he lifted a little of the liquid restriction, which is a nice relief. It's so hard to only drink 32 oz. of fluid a day! I've been fighting an allergic reaction for the last 3-4 weeks with a painful itchy rash all over my body, and that seems to finally be clearing up now. My doctors believe the anti-viral/anti-bacterial medication that prevents me from getting ill might be the culprit. We've removed all non-essential medications and vitamins until we can get the rash to go away. After that, we'll start to reintroduce the medications one by one until we find out what's causing the allergy. In the meantime, I have to be really careful with my immunity, especially now that we are increasing the chemotherapy.
All of this is such a tricky balance. I never had issues with my kidneys until I developed Wegener's. I never had issues with blood pressure until I had issues with my kidneys. I never had issues with glucose until I was on prednisone. All of these medications and aspects of this disease have little side effects with their own little monsters. I'm starting to see how the management of a chronic illness can become so exhausting. One little tweak here or there can throw off the whole system. Overall, though, today was an encouraging visit. I feel strong and in control, and now I'm just hoping that it continues...
The standard treatment for Wegener's has 2 parts - steroids and oral chemo. The steroids offer a more acute solution, acting quickly to stop the progression of the damage. The chemo works more slowly to assist in reaching remission. If the chemo meds can be increased, and my body can tolerate the medicine, then the steroids should be able to be reduced in the next 2-4 weeks. As I mentioned in my previous posts, I have come to terms with the fact that transplant and possible dialysis are in my future.
Today the doctor and I talked about short and long term options. The best possible long term outcome would be for my kidney function to improve, allowing me to avoid dialysis and transplant. If we can get my kidneys back to 30-40%, like they were in January, then I can probably avoid transplant for many more years. The odds of that option happening aren't great, but it's not impossible. The type of kidney damage I have is typically irreversible.
The worst case scenario would be for my kidneys to continue to get progressively damaged to the point that I need dialysis in a few short months, eventually leading to transplant. Dialysis in that case might be temporary or long term. However, the longer a patient is on dialysis, the less likely he/she is to have a successful transplant, and the lower the life expectancy.
Of course, we could also have a blended outcome, where we're able to get my kidneys to stabilize, but we need to plan for transplant in several years. As my doctor stated, I need my kidneys to last me another 70-80 years, so 15-20% function isn't much to work with for that long of a time span.
One thing I hadn't thought about before today was the role that Wegener's plays in this. In order for me to get a transplant, I need to have been in remission for 1-2 years. So, that means that even if I had a brand new kidney right here, right now, ready for transplant, and I met all criteria with the perfect weight and blood levels, I still wouldn't be able to get a transplant for another 1-2 years until I'm in remission.
I realize it may seem strange to be talking about transplant before dialysis, especially since we usually think of transplant as a last resort. However, patients that go straight to transplant, without ever having dialysis, tend to have a longer life expectancy and better results overall. Dialysis is there to help keep me alive while I wait for transplant. I'm at the point now that I realize that at some point, I will have to get a new kidney. The question will simply be when...
So, in the meantime, we're working on getting this bad boy in remission. It feels a bit like wrangling a wild beast or trying to stop a runaway train, but at least I don't feel like I'm being bucked off that horse yet. I'm also down 14 pounds, which my doctor found very impressive, especially considering the massive amounts of steroids I'm taking. My blood sugar level was elevated last time as a result of the medications, so I'm working on monitoring that and my blood pressure. Also, he lifted a little of the liquid restriction, which is a nice relief. It's so hard to only drink 32 oz. of fluid a day! I've been fighting an allergic reaction for the last 3-4 weeks with a painful itchy rash all over my body, and that seems to finally be clearing up now. My doctors believe the anti-viral/anti-bacterial medication that prevents me from getting ill might be the culprit. We've removed all non-essential medications and vitamins until we can get the rash to go away. After that, we'll start to reintroduce the medications one by one until we find out what's causing the allergy. In the meantime, I have to be really careful with my immunity, especially now that we are increasing the chemotherapy.
All of this is such a tricky balance. I never had issues with my kidneys until I developed Wegener's. I never had issues with blood pressure until I had issues with my kidneys. I never had issues with glucose until I was on prednisone. All of these medications and aspects of this disease have little side effects with their own little monsters. I'm starting to see how the management of a chronic illness can become so exhausting. One little tweak here or there can throw off the whole system. Overall, though, today was an encouraging visit. I feel strong and in control, and now I'm just hoping that it continues...
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