Dad's Belgian Waffle Breakfast Feed
Saturday 15 May 2010
0800 - 1300
Christ The King Church
1040 South Grade Road
Hutchinson, MN 55350
I met with Dr. Oran Tuesday. This was the first time I've seen her since I've developed GVHD and she was surprised that my symptoms had not completely cleared yet. Even today my skin, especially my hands, feet, and face, are red and peeling, signs that GVH is still present. Dr. O said symptoms should have disappeared completely within 10 - 14 days, which was Tuesday. Normally at this point I would have been put on stronger immunosuppressants to quell the remaining GVH, but (of course) my situation is more complicated. First, it was Dr. Oran's first time seeing me, so she had no reference as to whether my symptoms are getting better or getting worse or staying steady. Secondly, the Vancomycin I was taking (an antibiotic) can cause a condition called Red Man Syndrome. This syndrome causes the skin to become red, achy, and peel, thus closely mimicking GVH symptoms. Dr. Oran consulted the GVHD expert at the BMT clinic and the two of them were not enough convinced my symptoms are purely GVHD (thinking the Vancomycin and Red Man Syndrome were playing roles) to justify further immune suppression at this point. Apparently the suppression treatment is pretty high-octane, so they don't want to resort to it unless they can be confidant it is necessary.
So it was decided I would be switched from the Vancomycin to Clindamycin (another antibiotic that would do the same job sans the Red Man Syndrome) until the antibiotic run concluded Friday. I'm meeting with her again Tuesday morning. Then she'll be able to note what sort of changes have taken place and decide if further suppression is needed.
It seems that my symptoms have improved since I've stopped the Vancomycin, but my hands especially are still red and painful. My thighs, chest, and back all look good, so I'm confidant the GVH isn't getting worse, it just should be better at this point.
My taste is still all messed up, but it's better than it was before. At first nothing tasted good. Now I've come to enjoy savory things - meat, vegetables (I eat lots of salads), pastas, plain yogurt, cottage cheese, and orange juice. I still have little sensation of salty or sweet, but I've found enough foods to keep me eating well. I have such cravings for the flavors I'm missing, it'll be a great day when they come back.
I've been retaining a ton of water too. When I was discharged from the hospital on 27 April I weighed about 165#. Now I weigh about 190# and my legs look like plump sausages. I've been eating a lot (my appetite is back with a vengeance) but there's no way I put on that much weight from eating (plus if you saw my legs you'd know they're not right). Dr. Oran said GVHD can cause edema, plus one of my blood pressure medications causes water retention. Plus I bet the antibiotics didn't help. Either way, Tuesday I'm guessing Dr. O'll prescribe a diuretic to help alleviate some of the pressure.
So it was decided I would be switched from the Vancomycin to Clindamycin (another antibiotic that would do the same job sans the Red Man Syndrome) until the antibiotic run concluded Friday. I'm meeting with her again Tuesday morning. Then she'll be able to note what sort of changes have taken place and decide if further suppression is needed.
It seems that my symptoms have improved since I've stopped the Vancomycin, but my hands especially are still red and painful. My thighs, chest, and back all look good, so I'm confidant the GVH isn't getting worse, it just should be better at this point.
My taste is still all messed up, but it's better than it was before. At first nothing tasted good. Now I've come to enjoy savory things - meat, vegetables (I eat lots of salads), pastas, plain yogurt, cottage cheese, and orange juice. I still have little sensation of salty or sweet, but I've found enough foods to keep me eating well. I have such cravings for the flavors I'm missing, it'll be a great day when they come back.
I've been retaining a ton of water too. When I was discharged from the hospital on 27 April I weighed about 165#. Now I weigh about 190# and my legs look like plump sausages. I've been eating a lot (my appetite is back with a vengeance) but there's no way I put on that much weight from eating (plus if you saw my legs you'd know they're not right). Dr. Oran said GVHD can cause edema, plus one of my blood pressure medications causes water retention. Plus I bet the antibiotics didn't help. Either way, Tuesday I'm guessing Dr. O'll prescribe a diuretic to help alleviate some of the pressure.
