A New Partner in Crime
Yesterday I had the opportunity to meet with a new rheumatologist. Before I summarize the visit, I have to give props to the amazing dermatologist I met with who arranged our appointment. My father, having scleroderma, has been seeing a great dermatologist for a while. My mom saw her as well, and knowing that being on immuno-suppresive medications could cause latent issues (like skin cancers) to arise, I made an appointment for an annual skin check. During the visit, this dermatologist had a very candid conversation with me about finding good doctors. When I mentioned that I was on the lookout for a new rheumatologist who had more experience with Wegener's, she said she had just the guy. She met him for lunch the next day and called me two days later with an appointment time. I was delighted!
Last week, my Thursday appointment with him was rescheduled to Wednesday. I happily adjusted my schedule and drove to downtown Dallas to meet with him. He spent over 3 hours talking with me. In our conversation, I learned that the reason he had rescheduled was because he didn't usually work Wednesdays, but after he reviewed my chart, he wanted to make sure he had plenty of time to talk with me, ease my fears, and answer my questions, so he came in on his day off to meet with just me. I was blown away. That kind of personal attention and dedication seems so rare today, when the medical industry standard has become 15 minute appointments, rushed labs, and no time for questions. The personal care and attention of the dermatologist, the attention-to-detail of the rheumatologist, combined with the ongoing thoroughness, intelligence, and kindness of my nephrologist, I feel like my medical team is really complete now. I can say confidently that I'm in good hands and that I trust my doctors.
So now to the nitty gritty... after a 3 hour conversation, medical exam, and history, here's the "gist" of the rheumatologist's take.
1. It is highly likely that I have had Wegener's granulomatosis in limited form since 2007. Erythema Nodosum (nodules on shins), which is what I was diagnosed with in 2007, is a type of vasculitis, as is Wegener's. Wegener's can create necrosis in soft tissue, which can mimic EN. Also, EN is usually easily resolved in 6-8 weeks with small doses of NSAIDS or steroids. My case required heavy doses of powerful immuno-suppressants, implying that there was an underlying condition that had not been found. So, rather than being someone who's been "sickly" for several years with a myriad of things, it's been Wegener's, taking its time to reveal itself.
2. My treatment/therapy is the "gold standard", and will probably work. The only suggestion here is to increase my cytoxan (oral chemotherapy) medication levels. Basically, the steroid levels are high - really high - and that's good for now, but we want to back off soon. Steroids are supposed to have a more "acute" effect, stopping the disease in its tracks. The cytoxan does the same thing, but it's more of a facilitator. It helps the steroid work well and achieve remission. Since my white blood cell count is still quite high, we have some wiggle room to be more aggressive with the cytoxan. Hopefully that will stop the creatinine levels from rising more and spur my body into remission faster. My rheumatologist will be calling my nephrologist to discuss my therapy and further coordinate treatment. With a disease like Wegener's, the doctor who is "in charge of" the organ with the biggest involvement (in my case, kidneys) takes "lead", but it's really a team approach. I see my nephrologist again on Monday, so we'll be talking about med levels on that day as well. It's likely that my hair will get much thinner if we up the chemo meds, but that's the least of my worries. I'm all ready to go wig shopping if needed!
3. It's still really early. I have to keep in mind that most IV chemo treatment therapies, which are notably more aggressive (though not as effective as oral chemo in diseases like Wegener's), take at least 3 months to show real progress. I've been on meds since Jan. 18, so we're right at 2 months. I have to be patient and allow everything time to work.
I left the visit feeling confident. Doctors are really just people, of course, but we put so much faith (and pressure) on them to get everything right 100% of the time. With everything you hear constantly in the media about medicare and legistlation and health care this and that.... prescription costs and copays.... it can become so disheartening. But then you meet some doctors that truly love what they do. They take the time to follow-up and make sure you feel secure and safe, discussing your case over lunch and collaborating among colleagues. It restores my faith in a profession that gets so clouded in media and controversy. Just like teachers, the majority of these people spend their lives trying to improve the lives of others. And I'm so grateful to have them all in my corner. Together, we're going to kick Wegener's rear!
Last week, my Thursday appointment with him was rescheduled to Wednesday. I happily adjusted my schedule and drove to downtown Dallas to meet with him. He spent over 3 hours talking with me. In our conversation, I learned that the reason he had rescheduled was because he didn't usually work Wednesdays, but after he reviewed my chart, he wanted to make sure he had plenty of time to talk with me, ease my fears, and answer my questions, so he came in on his day off to meet with just me. I was blown away. That kind of personal attention and dedication seems so rare today, when the medical industry standard has become 15 minute appointments, rushed labs, and no time for questions. The personal care and attention of the dermatologist, the attention-to-detail of the rheumatologist, combined with the ongoing thoroughness, intelligence, and kindness of my nephrologist, I feel like my medical team is really complete now. I can say confidently that I'm in good hands and that I trust my doctors.
So now to the nitty gritty... after a 3 hour conversation, medical exam, and history, here's the "gist" of the rheumatologist's take.
1. It is highly likely that I have had Wegener's granulomatosis in limited form since 2007. Erythema Nodosum (nodules on shins), which is what I was diagnosed with in 2007, is a type of vasculitis, as is Wegener's. Wegener's can create necrosis in soft tissue, which can mimic EN. Also, EN is usually easily resolved in 6-8 weeks with small doses of NSAIDS or steroids. My case required heavy doses of powerful immuno-suppressants, implying that there was an underlying condition that had not been found. So, rather than being someone who's been "sickly" for several years with a myriad of things, it's been Wegener's, taking its time to reveal itself.
2. My treatment/therapy is the "gold standard", and will probably work. The only suggestion here is to increase my cytoxan (oral chemotherapy) medication levels. Basically, the steroid levels are high - really high - and that's good for now, but we want to back off soon. Steroids are supposed to have a more "acute" effect, stopping the disease in its tracks. The cytoxan does the same thing, but it's more of a facilitator. It helps the steroid work well and achieve remission. Since my white blood cell count is still quite high, we have some wiggle room to be more aggressive with the cytoxan. Hopefully that will stop the creatinine levels from rising more and spur my body into remission faster. My rheumatologist will be calling my nephrologist to discuss my therapy and further coordinate treatment. With a disease like Wegener's, the doctor who is "in charge of" the organ with the biggest involvement (in my case, kidneys) takes "lead", but it's really a team approach. I see my nephrologist again on Monday, so we'll be talking about med levels on that day as well. It's likely that my hair will get much thinner if we up the chemo meds, but that's the least of my worries. I'm all ready to go wig shopping if needed!
3. It's still really early. I have to keep in mind that most IV chemo treatment therapies, which are notably more aggressive (though not as effective as oral chemo in diseases like Wegener's), take at least 3 months to show real progress. I've been on meds since Jan. 18, so we're right at 2 months. I have to be patient and allow everything time to work.
I left the visit feeling confident. Doctors are really just people, of course, but we put so much faith (and pressure) on them to get everything right 100% of the time. With everything you hear constantly in the media about medicare and legistlation and health care this and that.... prescription costs and copays.... it can become so disheartening. But then you meet some doctors that truly love what they do. They take the time to follow-up and make sure you feel secure and safe, discussing your case over lunch and collaborating among colleagues. It restores my faith in a profession that gets so clouded in media and controversy. Just like teachers, the majority of these people spend their lives trying to improve the lives of others. And I'm so grateful to have them all in my corner. Together, we're going to kick Wegener's rear!
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