Dr. Oran is pleased with the progress my GVH has made in the past week and doesn't believe further immune suppression is necessary now. Although the skin on my hands, feet, and face is still dry and peeling, my color "has improved" and the rest of my body looks clear.
The report on my ECHO won't be completed and reviewed by Dr. Oran until later this week, so I'll get a call. I weighed 90.0kg today, which is one kilo less than yesterday. She said the prednisone and GVH could be causing to the edema. Since the GVH is looking better I will start a ten-week taper of my prednisone tomorrow. This in combination with stopping the Norvasc yesterday and my week-long diuretic run should rid me of all this extra water, pending the ECHO. I went and bought thigh-high compression stockings today too...they were hard to put on. But I think they're gonna make a big difference.
The University of Minnesota pharmacies have been out of stock on the pill form of Acyclovir for months. Instead of taking a pill four times a day, I've had to take 20mL of it in liquid suspension. They received stock of the pill form recently, so when I got my refill today I received pills! I'm finally able to put it into my pill box instead of lugging around a jug of liquid form and an oral syringe. That's a lot less to carry. I'm excited about it.
My next appointment is a checkup on Friday. IRael and I will be out for the benefit Saturday, I hope everyone is able to attend!
11 May 2010
10 May 2010
Day 70
I had two appointments today.
First I had an eye appointment. My vision in both eyes hasn't changed since my appointment a month ago. In the right eye this is ok, I can still see very normally. In the left eye I still have the large vision field blockage due to blood from the hemorrhage in my retina. When I wake up in the morning my vision is almost clear in the left eye (the blood settles as my head remains still as I sleep), but within an hour the blood gets stirred up, causing the blockage. The doctor likened it to a snow globe. The good news is that the damage has remained stable since my appointment a month ago and my ophthalmologist says there is no need for immediate surgical intervention. This is also good because since my blood counts are still unstable surgery on the delicate vessels in the eye would be very risky right now. Unfortunately this means I will have to continue living with the blockage for now. It's annoying, but the important thing is that further damage isn't occurring. My doctor also said this sort of hemorrhage often clear up without major intervention, so giving it time is the best course of action.
My second appointment was with the BMT clinic. Yesterday I went in to the clinic because I have been retaining massive amounts of water. When I was in clinic on Friday I weighed 71 kilos, on Sunday I weighed 92 kilos... That's like 27# of water weight in two days! My legs were so full Saturday night I could barely walk. So in order to bring some relief I was put on a diuretic (drug that makes you pee) and began taking frequent trips to the toilet. The doctor said it would take about a week to drain all the excess fluid off.
Being on a diuretic can cause major problems in the blood chemistry, so I have to go in daily and have mine checked. Diuretics also work by removing the water from the interior of the cells in your body, whereas the fluid I'm retaining exists in the space surrounding the cells. So the danger is that I'll dehydrate too quickly, only losing water from the cells' interiors, not the fluid from around the cells (that's the fluid I need to get rid of). So even though I'm full of water I need to drink lots of water, which'll just slow the process. Wrapping my legs tightly and elevating will help force the extracellular fluid into cells, which will keep them hydrated and allow the diuretic to remove the excess fluid. After two days I've noticed a definite increase in my comfort level (I don't feel so much like a water balloon anymore), but I still have a long way to go.
The million dollar question is why this happened. My kidney function is fine. Amlodipine, one of my blood pressure medications, causes edema. Rapamune, my immunosuppressant, also causes edema. But spontaneously gaining 27# of water due to medications I've been taking for weeks? My doctor today wasn't convinced. Unfortunately she's concerned that the cause is my heart. She told me sometimes after chemotherapy and transplant the heart can weaken, causing fluid retention similar to what I experienced. So tomorrow I have an ECHO study to test for heart failure. I also meet with Dr. Oran to discuss how my GVH is progressing. We'll see how it goes.
First I had an eye appointment. My vision in both eyes hasn't changed since my appointment a month ago. In the right eye this is ok, I can still see very normally. In the left eye I still have the large vision field blockage due to blood from the hemorrhage in my retina. When I wake up in the morning my vision is almost clear in the left eye (the blood settles as my head remains still as I sleep), but within an hour the blood gets stirred up, causing the blockage. The doctor likened it to a snow globe. The good news is that the damage has remained stable since my appointment a month ago and my ophthalmologist says there is no need for immediate surgical intervention. This is also good because since my blood counts are still unstable surgery on the delicate vessels in the eye would be very risky right now. Unfortunately this means I will have to continue living with the blockage for now. It's annoying, but the important thing is that further damage isn't occurring. My doctor also said this sort of hemorrhage often clear up without major intervention, so giving it time is the best course of action.
My second appointment was with the BMT clinic. Yesterday I went in to the clinic because I have been retaining massive amounts of water. When I was in clinic on Friday I weighed 71 kilos, on Sunday I weighed 92 kilos... That's like 27# of water weight in two days! My legs were so full Saturday night I could barely walk. So in order to bring some relief I was put on a diuretic (drug that makes you pee) and began taking frequent trips to the toilet. The doctor said it would take about a week to drain all the excess fluid off.
Being on a diuretic can cause major problems in the blood chemistry, so I have to go in daily and have mine checked. Diuretics also work by removing the water from the interior of the cells in your body, whereas the fluid I'm retaining exists in the space surrounding the cells. So the danger is that I'll dehydrate too quickly, only losing water from the cells' interiors, not the fluid from around the cells (that's the fluid I need to get rid of). So even though I'm full of water I need to drink lots of water, which'll just slow the process. Wrapping my legs tightly and elevating will help force the extracellular fluid into cells, which will keep them hydrated and allow the diuretic to remove the excess fluid. After two days I've noticed a definite increase in my comfort level (I don't feel so much like a water balloon anymore), but I still have a long way to go.
The million dollar question is why this happened. My kidney function is fine. Amlodipine, one of my blood pressure medications, causes edema. Rapamune, my immunosuppressant, also causes edema. But spontaneously gaining 27# of water due to medications I've been taking for weeks? My doctor today wasn't convinced. Unfortunately she's concerned that the cause is my heart. She told me sometimes after chemotherapy and transplant the heart can weaken, causing fluid retention similar to what I experienced. So tomorrow I have an ECHO study to test for heart failure. I also meet with Dr. Oran to discuss how my GVH is progressing. We'll see how it goes.
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