Nothing has been found yet that shows that
the amyloids are systemic. There was nothing out of the ordinary in my blood
work, and they didn't capture any amyloids in my blood marrow biopsy.
I
have two more tests on Monday, August 26:
1. Fat Pad Biopsy at 11
a.m.
2. Echocardiogram at 12:30 p.m.
The nurse practitioner will call
me again next week (probably Thursday) with the results of those two tests.
I love being a challenge.
Thursday, August 22, 2013
Friday, August 16, 2013
August 16 Appointment - Hematology
[NOTE: Today's blog entry was written by my sister-in-law, Chris. I already knew she was a super hero. Turns out she's a heck of a writer, too! Thanks, Chris!!]
Mom and I went today with Darcy to her appointment with UM’s Hematology clinic to discuss the results of her May kidney biopsy that identified amyloid cells in her kidney. First I’m going to give you some background (which may be old news to some of you), then the facts that we learned from the visit today, and finally the current plan/next steps.
So, here we go:
Darcy had a kidney biopsy in 2010 that gave her a not crystal clear diagnosis of lupus nephritis or IgA nephropathy. Since then, she’s had her kidney function regularly monitored. Recently, the amount of protein in her urine increased significantly which led her nephrologist to order another biopsy – the infamous poorly-done-results-taking-forever May test. Turns out that sample went back and forth between the Mayo Clinic and UM because it “looked” to the pathologist like there were amyloids in the sample, but they didn’t “light up” with the usual tests. Mayo ultimately did a more sensitive test and eventually confirmed the presence of AL amyloids. So the first unusual finding was how long it took and how hard it was to find the amyloids. The second is that the evidence of the IgA nephropathy from the 2010 biopsy wasn’t present.
So, that got her referred to the Hematology clinic. Darcy was first examined by a rock star Nurse Practitioner (named Kristen Detweiler) who explained what they know and what they were looking for.
KNOW
NEED TO KNOW
Before this morning’s appointment, Darcy had blood drawn that will let them know if there are amyloids in other organs. Those results are expected by mid-week next week. Darcy will have an echocardiogram next week to see if there are amyloids in her heart. These two things will answer the question about whether her kidneys are partying with the amyloids alone or if they have company in other organs.
As I said above, the type of amyloids found by Mayo are known as AL amyloids and are usually made in the bone marrow. The NP explained that when this is the case, plasma cells in the bone marrow keep making the same protein and “fold it the wrong way” – which makes the amyloids. This led to the 1:30 bone marrow biopsy Darcy had this afternoon. They took a fluid and a bone sample to look for these abnormal plasma cells as well as to look for the presence of amyloids themselves in the bone marrow. (NOTE: Turns out the rock star NP was the person who did the biopsy and the whole process was about a zillion times better than the May kidney biopsy. They even had a person in the room whose sole job was to rub Darcy’s back during the entire procedure!)
The NP told Darcy that she would call her Wednesday with the results of the blood tests and that she’d hear the bone marrow biopsy results by Friday next week.
If the bone marrow biopsy does not confirm that the “factory” is in the bone marrow, they will then schedule another biopsy just under the skin. Sometimes amyloids can be produced in a person’s fat cells. There’s no reason to do this procedure if they find that they are being produced in her bone marrow. They will only order this test if the bone marrow biopsy results are negative.
So here are the possible scenarios:
1. The amyloids are found to be ONLY in Darcy’s kidneys. This would make her rare disease even rarer. If this is the case, the UM doctor said that he would have to consult with one of the handful of doctors in the country who see more amyloidosis – most likely at the Mayo Clinic.
2. The factory is in either Darcy’s bone marrow or fat cells, which makes it systemic. This means that the amyloids would have the potential of infiltrating other organs – which we do not want.
3. The amyloidosis is found to be systemic and there is evidence that amyloids have taken residence in other organs.
Before any treatment plan can be created they have to figure out which of the above scenarios describes Darcy’s amyloidosis. Dr. Lebovic said that any way around it, she would need some form of treatment; they want to get rid of the amyloids she has. The only specific situation we discussed is if they find that the amyloids are being produced in the bone marrow and the kidney is the only organ affected, then he’d likely recommend a bone marrow transplant. He said the real positive about that treatment is that you are basically closing the factory – which gives longer term protection from the disease.
OVERALL THOUGHTS/OBSERVATIONS
The staff in this clinic is great – Darcy is in good hands here. They are very aware of the waiting for answers Darcy has had to endure and are working to get answers for her now as soon as possible.
We’ve all known forever that Darcy is strange – well, this confirms it. She’s been sharing info with us for a while about how it has been difficult to completely diagnose her accurately. Today’s information, while helpful, is still riddled with questions. Then, when you start to think about what we learned today and go back and think about what Darcy has heard in the past from her other doctors, you see a lot more. We were joking today about her being a future medical journal article (or two or three…). But it feels like some of the pieces are starting to come together. Today’s team clearly feels they’re on a path to get answers.
We’ve all been alarmed to some degree with the possibility of this diagnosis. The NP put it this way, amyloidosis can be a tragic disease – but when it is, it’s usually when the amyloids are found in the heart and the patient presents significant symptoms of heart disease. We won’t know anything for sure until we have the test results next week, but given what they know now, they don’t seem to think that Darcy is on that end of the spectrum.
We won’t know next steps for a little while. At this point, the type or length of treatment Darcy will have is unknown. So all questions associated with that - from timing to side effects to when will she feel better, etc. won’t be answered for a little while still. But it seems to me that we’ll know a lot more in about a week.
Well, that’s it for now. Feel free to fire off any questions you have and I’m sure we’ll all hear about test results as Darcy gets them. Now, have a good weekend and GO TIGERS!!!!
Chris
Mom and I went today with Darcy to her appointment with UM’s Hematology clinic to discuss the results of her May kidney biopsy that identified amyloid cells in her kidney. First I’m going to give you some background (which may be old news to some of you), then the facts that we learned from the visit today, and finally the current plan/next steps.
So, here we go:
Darcy had a kidney biopsy in 2010 that gave her a not crystal clear diagnosis of lupus nephritis or IgA nephropathy. Since then, she’s had her kidney function regularly monitored. Recently, the amount of protein in her urine increased significantly which led her nephrologist to order another biopsy – the infamous poorly-done-results-taking-forever May test. Turns out that sample went back and forth between the Mayo Clinic and UM because it “looked” to the pathologist like there were amyloids in the sample, but they didn’t “light up” with the usual tests. Mayo ultimately did a more sensitive test and eventually confirmed the presence of AL amyloids. So the first unusual finding was how long it took and how hard it was to find the amyloids. The second is that the evidence of the IgA nephropathy from the 2010 biopsy wasn’t present.
So, that got her referred to the Hematology clinic. Darcy was first examined by a rock star Nurse Practitioner (named Kristen Detweiler) who explained what they know and what they were looking for.
KNOW
- There are amyloids in Darcy’s kidney tissue.
- They are the AL type – which are the kind that are usually made in the bone marrow.
- They are not the type of amyloids that are produced as the result of a chronic condition.
NEED TO KNOW
- They need to find the “factory” in Darcy’s body that is making the amyloids.
- They need to find out if the amyloids are hanging out in any other organs.
Before this morning’s appointment, Darcy had blood drawn that will let them know if there are amyloids in other organs. Those results are expected by mid-week next week. Darcy will have an echocardiogram next week to see if there are amyloids in her heart. These two things will answer the question about whether her kidneys are partying with the amyloids alone or if they have company in other organs.
As I said above, the type of amyloids found by Mayo are known as AL amyloids and are usually made in the bone marrow. The NP explained that when this is the case, plasma cells in the bone marrow keep making the same protein and “fold it the wrong way” – which makes the amyloids. This led to the 1:30 bone marrow biopsy Darcy had this afternoon. They took a fluid and a bone sample to look for these abnormal plasma cells as well as to look for the presence of amyloids themselves in the bone marrow. (NOTE: Turns out the rock star NP was the person who did the biopsy and the whole process was about a zillion times better than the May kidney biopsy. They even had a person in the room whose sole job was to rub Darcy’s back during the entire procedure!)
The NP told Darcy that she would call her Wednesday with the results of the blood tests and that she’d hear the bone marrow biopsy results by Friday next week.
If the bone marrow biopsy does not confirm that the “factory” is in the bone marrow, they will then schedule another biopsy just under the skin. Sometimes amyloids can be produced in a person’s fat cells. There’s no reason to do this procedure if they find that they are being produced in her bone marrow. They will only order this test if the bone marrow biopsy results are negative.
So here are the possible scenarios:
1. The amyloids are found to be ONLY in Darcy’s kidneys. This would make her rare disease even rarer. If this is the case, the UM doctor said that he would have to consult with one of the handful of doctors in the country who see more amyloidosis – most likely at the Mayo Clinic.
2. The factory is in either Darcy’s bone marrow or fat cells, which makes it systemic. This means that the amyloids would have the potential of infiltrating other organs – which we do not want.
3. The amyloidosis is found to be systemic and there is evidence that amyloids have taken residence in other organs.
Before any treatment plan can be created they have to figure out which of the above scenarios describes Darcy’s amyloidosis. Dr. Lebovic said that any way around it, she would need some form of treatment; they want to get rid of the amyloids she has. The only specific situation we discussed is if they find that the amyloids are being produced in the bone marrow and the kidney is the only organ affected, then he’d likely recommend a bone marrow transplant. He said the real positive about that treatment is that you are basically closing the factory – which gives longer term protection from the disease.
OVERALL THOUGHTS/OBSERVATIONS
The staff in this clinic is great – Darcy is in good hands here. They are very aware of the waiting for answers Darcy has had to endure and are working to get answers for her now as soon as possible.
We’ve all known forever that Darcy is strange – well, this confirms it. She’s been sharing info with us for a while about how it has been difficult to completely diagnose her accurately. Today’s information, while helpful, is still riddled with questions. Then, when you start to think about what we learned today and go back and think about what Darcy has heard in the past from her other doctors, you see a lot more. We were joking today about her being a future medical journal article (or two or three…). But it feels like some of the pieces are starting to come together. Today’s team clearly feels they’re on a path to get answers.
We’ve all been alarmed to some degree with the possibility of this diagnosis. The NP put it this way, amyloidosis can be a tragic disease – but when it is, it’s usually when the amyloids are found in the heart and the patient presents significant symptoms of heart disease. We won’t know anything for sure until we have the test results next week, but given what they know now, they don’t seem to think that Darcy is on that end of the spectrum.
We won’t know next steps for a little while. At this point, the type or length of treatment Darcy will have is unknown. So all questions associated with that - from timing to side effects to when will she feel better, etc. won’t be answered for a little while still. But it seems to me that we’ll know a lot more in about a week.
Well, that’s it for now. Feel free to fire off any questions you have and I’m sure we’ll all hear about test results as Darcy gets them. Now, have a good weekend and GO TIGERS!!!!
Chris
Tuesday, August 13, 2013
On the Bright Side...
I stopped by the UM Cancer Center tonight to pick something up and was downright giddy to see that there's a Jamba Juice Smoothie Station there. I Googled this (of course!) and it just opened AND it's the first Jamba in Michigan. Woot!
My bone marrow biopsy is scheduled for this Friday afternoon, and I know where I'm heading once the procedure is over and I'm discharged. Orange Dream Machine Smoothie, here I come!
My bone marrow biopsy is scheduled for this Friday afternoon, and I know where I'm heading once the procedure is over and I'm discharged. Orange Dream Machine Smoothie, here I come!
Monday, August 12, 2013
Plot Twist
A few months ago, a friend was chiding me for my lack of new blog posts. I told her that kidney disease is like a slow movie with a compelling plot. The changes can be subtle and take time, but they come -- and are significant.
The latest twist? My kidney biopsy results are back and, according to Mayo Clinic, I have something called amyloidosis -- a rare blood disease. I have been referred to U-M hematology and have an appointment at the Cancer Center's Myeloma Clinic on August 16.
All of the sudden, my slow moving plot has turned into an action film.
I am Bruce Willis saying "Yippee Ki Yay."
I am Optimus Prime, driving down country roads in Adrian, get shot at by the enemy. (Credit goes to Jeremy Sell for this Transformers 4 footage.)
And I'm thinking that things are going to change.
The latest twist? My kidney biopsy results are back and, according to Mayo Clinic, I have something called amyloidosis -- a rare blood disease. I have been referred to U-M hematology and have an appointment at the Cancer Center's Myeloma Clinic on August 16.
All of the sudden, my slow moving plot has turned into an action film.
I am Bruce Willis saying "Yippee Ki Yay."
I am Optimus Prime, driving down country roads in Adrian, get shot at by the enemy. (Credit goes to Jeremy Sell for this Transformers 4 footage.)
And I'm thinking that things are going to change.
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