Medical Update - 4/17/11
It's been a while since I've posted a straight "medical update" on my situation, so I figured one was due. Last week I was able to meet with my rheumatologist. He reviewed my most recent blood results and some more detailed results from my kidney biopsy. Then, this last Monday, I saw my nephrologist for a check-up, and while the majority of that visit is a blur, there were some highlights worth sharing. The last few lab results have shown some more stability in my kidney function. On March 16, my creatinine level was at 3.8. On March 28, it was at 3.76 (essentially the same). My doctors decided to increase my cytoxan (chemotherapy) meds on 3/30. Then, on April 8, my creatinine was at 3.84. We started "official" treatment on Jan. 18, so April 18 (tomorrow) is my official 3 month mark.
They say it takes a full 3 months before these meds really start to take effect, which is why my kidney function continued to deterioriate, even after I started treatment. I am hopeful that the last three rounds of bloodwork are showing that we're getting this beast under control, and now I'm just hoping for official remission. Once we get that date, the timetable will start for a reduction in medications. Also, if I do end up needing to do a kidney transplant, I have to be in "offical" remission for at least 1 1/2-2 years.
What I have noticed is an immense difference in the side effects of the medications. I'm assuming they are hard at work, because goodness knows their side effects are! There's a irony to the fact that the meds seems to almost make me feel "sicker" at times, even though I know they are saving my life. I still can't get over not recognizing my own reflection in the mirror, or having my clothes fit strangely because my body has changed. All small things, I know, but still... odd. I can see why some people who have had to deal with chronic illness for a long time sometimes feel the need to flush the whole mess and start again. Overall, though, I can't complain too much. As long as they are working! The prednisone is the nastiest of them all, I think, and I can see why my doctor is so anxious to get me in remission so we can start tapering down the dose. What's crazy is that, as much as I hate the prednisone, I'm also scared to death to taper it. After all, I'm only at 15% kidney function, so I don't have much wiggle room. Thankfully, I know that I have several VERY good doctors who are carefully watching every blip and level of my bloodwork to make sure we can avoid dialysis as long as possible.
My doctors have said that if we don't start to see some actual improvement of my kidney function (beyond just stability) then we might consider some alternative (aka- experimental/probably not covered by insurance) methods or drugs to see if we can encourage remission. They believe that since I have probably had this illness for several years as a "smouldering" vasculitis, it's probably pretty active and may take more time to beat into remission. My rheumatologist took 8 vials of blood and sent it off to some fancy schmancy research lab in California to see if we could get more information, so I hope to get the results of those tests next week.
This past week, I also noticed a couple of red bumps on my abdomen. I had noticed little bumps before, but I had a breakout of shingles back in the fall, so I just assumed it was part of that, and those bumps were always small and resolved on their own in a couple of days. This one bump was different, though. It started getting red, hot to to the touch, and really inflamed. By Friday morning, the bump that had been maybe 1/2 an inch wide on Wednesday was now about 3 inches wide. I called my nephrologist, concerned that I might have an infection, and told him that it looked like the erythema spots I used to get on my shins. He told me to either go to the ER or to see my dermatologist immediately. A couple of hours later, I was in my dermatologist's office getting 2 punch biopsies and 6 stitches. We hope to have results from those tests on Friday, also. She told me that while skin involvement is rare with Wegener's, it did look like erythema. My rheumatologist says that erythema can actually be related to vasculitis, the family of diseases that Wegener's is a part of, so it's probably all related. So, while these bumps hurt like mad, I'm hopeful that the biopsies, combined with all the blood work that my rheumatologist ordered, will help point us in the right direction for the next steps.
I feel that there's a medicinal fork in the road approaching soon, so I think the next few weeks will probably be pretty important in the course of my treatment. While I'm relieved to see my numbers stabilizing, my doctors have made it very clear that we're not out of the woods yet. I know all I can do is take things one day (sometimes one hour) at a time and try to manage my symptoms and the side effects. This weekend was a good chance for me to do that. With everything going on lately (more on that in another post), I needed a few days to recenter, rest, and refocus on my health. I feel like I got that. Now, it's Sunday night and I'm feeling much more rested. After a warm shower, a good "stitch cleaning" session, and some light reading, I'm hoping another good night's sleep will help propel me through a short week.
They say it takes a full 3 months before these meds really start to take effect, which is why my kidney function continued to deterioriate, even after I started treatment. I am hopeful that the last three rounds of bloodwork are showing that we're getting this beast under control, and now I'm just hoping for official remission. Once we get that date, the timetable will start for a reduction in medications. Also, if I do end up needing to do a kidney transplant, I have to be in "offical" remission for at least 1 1/2-2 years.
What I have noticed is an immense difference in the side effects of the medications. I'm assuming they are hard at work, because goodness knows their side effects are! There's a irony to the fact that the meds seems to almost make me feel "sicker" at times, even though I know they are saving my life. I still can't get over not recognizing my own reflection in the mirror, or having my clothes fit strangely because my body has changed. All small things, I know, but still... odd. I can see why some people who have had to deal with chronic illness for a long time sometimes feel the need to flush the whole mess and start again. Overall, though, I can't complain too much. As long as they are working! The prednisone is the nastiest of them all, I think, and I can see why my doctor is so anxious to get me in remission so we can start tapering down the dose. What's crazy is that, as much as I hate the prednisone, I'm also scared to death to taper it. After all, I'm only at 15% kidney function, so I don't have much wiggle room. Thankfully, I know that I have several VERY good doctors who are carefully watching every blip and level of my bloodwork to make sure we can avoid dialysis as long as possible.
My doctors have said that if we don't start to see some actual improvement of my kidney function (beyond just stability) then we might consider some alternative (aka- experimental/probably not covered by insurance) methods or drugs to see if we can encourage remission. They believe that since I have probably had this illness for several years as a "smouldering" vasculitis, it's probably pretty active and may take more time to beat into remission. My rheumatologist took 8 vials of blood and sent it off to some fancy schmancy research lab in California to see if we could get more information, so I hope to get the results of those tests next week.
This past week, I also noticed a couple of red bumps on my abdomen. I had noticed little bumps before, but I had a breakout of shingles back in the fall, so I just assumed it was part of that, and those bumps were always small and resolved on their own in a couple of days. This one bump was different, though. It started getting red, hot to to the touch, and really inflamed. By Friday morning, the bump that had been maybe 1/2 an inch wide on Wednesday was now about 3 inches wide. I called my nephrologist, concerned that I might have an infection, and told him that it looked like the erythema spots I used to get on my shins. He told me to either go to the ER or to see my dermatologist immediately. A couple of hours later, I was in my dermatologist's office getting 2 punch biopsies and 6 stitches. We hope to have results from those tests on Friday, also. She told me that while skin involvement is rare with Wegener's, it did look like erythema. My rheumatologist says that erythema can actually be related to vasculitis, the family of diseases that Wegener's is a part of, so it's probably all related. So, while these bumps hurt like mad, I'm hopeful that the biopsies, combined with all the blood work that my rheumatologist ordered, will help point us in the right direction for the next steps.
I feel that there's a medicinal fork in the road approaching soon, so I think the next few weeks will probably be pretty important in the course of my treatment. While I'm relieved to see my numbers stabilizing, my doctors have made it very clear that we're not out of the woods yet. I know all I can do is take things one day (sometimes one hour) at a time and try to manage my symptoms and the side effects. This weekend was a good chance for me to do that. With everything going on lately (more on that in another post), I needed a few days to recenter, rest, and refocus on my health. I feel like I got that. Now, it's Sunday night and I'm feeling much more rested. After a warm shower, a good "stitch cleaning" session, and some light reading, I'm hoping another good night's sleep will help propel me through a short week.
I am praying for you hard, friend. I can't imagine what you're going through. You are so strong :)
ReplyDeleteHaha.... funny! I just reread this blog entry - something I don't normally do after posting. I put this up 2 days before I went into the hospital. I love the denial in my voice in the last paragraph. "Now, it's Sunday night and I'm feeling much more rested. After a warm shower, a good "stitch cleaning" session, and some light reading, I'm hoping another good night's sleep will help propel me through a short week." Wow... I write totally from the heart, unfiltered. And there you go. Two days later, my but was in a hospital bed, not to move for another 9 days. So much for thinking a "good night's sleep" would cure it all! I knew something was wrong... I can hear it in my words. Yet, I didn't listen. I didn't realize what was happening. Another lesson learned.... Thank goodness for this blog! What a way to reflect!!!
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