"Just the Facts"-- Feeling slightly better, still having stomach problems, but able to eat a bit more, and able to do some walking.
Yesterday was a fairly decent day. B felt pretty good, was able to walk, talk and eat a bit. He is still having some stomach issues even with the new stomach meds. We were at the doctors for a visit yesterday. Seems that the stomach issue is considered GVH of the gut. I had this feeling in the back of my mind but didn't want to verbalize this. So far he has have the skin GVH and now the Gut GVH. Hope that is all. You see there are 3 distinct kinds of GVH, 1 is called acute and presents in the first 100 days. Then there is chronic and presents after the first 100 days and can go on for 2-5 years. The final type is severe GVH and most don't make it with that one. The acute GVH can be eliminated in the first 100 days as well, so we are hopeful. We were able to drop 1 pill from the visit. But B only weighed 132 lbs. So the next tasks is to get his weight back up.
Tomorrow we go to infusion and will get some blood. This will be the first blood infusion in about 3 weeks. To us this is amazing! B has not gone that long without blood infusion since we first learned that B had this disease. So this just goes to show how well the transplant is working. So I am sure you are wondering, why does he need any blood. He continues to get blood draws regularly and the production is not fully developed yet to be able to keep up with all the blood being drawn from his body. So a little infusion is OK. Now if we could just get past all the peeling, life would be doing much better. In review we are feeling pretty fortunate, as at the beginning of the week it was looking like we might get re-admitted to the hospital and at the end of the week, we are eating, drinking, walking and able to get the pills down. This is answered prayer!
Until next time,
Hopeful Believer
Friday, March 25, 2011
Wednesday, March 23, 2011
Mar 23, day+53 Med Depot for Health Improvement
"Just the Facts"-- Still feeling very weak, but able to get some food and liquid down. Still battling stomach problems, but was able to get some walking in. Skin peeling to the 10th degree.
We have been working hard with the doctor since Monday's shutdown to remedy the stomach problem. This one problem seems to be the hardest to cope with yet. It drains any energy B may have, which really isn't much. So as of today, we have yet another new med that is to be taken 3 times a day to combat the stomach issue. At the end of the day, no new results yet. But we will see what tomorrow holds. In the meantime, I have re-assessed the food and liquid and pared it back to toast at every meal with something high protein. Liquid is room temp and mostly lows sugar with electrolytes. B was able to eat a bit more using this food approach yesterday and today was even better, although, his weight is now down to 130. This has now become my main focus; beefing up the calories and food intake.
I haven't shared much about the skin peel as it is really sort of gross. B is very uncomfortable with this, but can't do a thing about it. About the only thing we can do is every night we, or I mean, I have a date with both his feet and hands and some luxurious cream. Each area gets about a 10 minute gentle massage to help ease the sloughing off of skin. The palms and bottom of the feet seem to be taking on an odd process of peeling. The skin is very thick and hard that is coming off. These were the last areas of the rash and the most painful burning, without a doubt. So it is interesting that these areas are peeling differently. I really cannot fully describe it without possibly making someone sick. So I will leave well enough alone. In all this B's attitude is still hold up. He doesn't like the sick stomach feeling and that keeps him down, but his mind and spirit are still in tack and on a mission to get well. Once again I attribute this to his faith and that of all those who are keep B in prayer. You all have my deepest gratitude.
Until next time,
Hopeful Believer.
We have been working hard with the doctor since Monday's shutdown to remedy the stomach problem. This one problem seems to be the hardest to cope with yet. It drains any energy B may have, which really isn't much. So as of today, we have yet another new med that is to be taken 3 times a day to combat the stomach issue. At the end of the day, no new results yet. But we will see what tomorrow holds. In the meantime, I have re-assessed the food and liquid and pared it back to toast at every meal with something high protein. Liquid is room temp and mostly lows sugar with electrolytes. B was able to eat a bit more using this food approach yesterday and today was even better, although, his weight is now down to 130. This has now become my main focus; beefing up the calories and food intake.
I haven't shared much about the skin peel as it is really sort of gross. B is very uncomfortable with this, but can't do a thing about it. About the only thing we can do is every night we, or I mean, I have a date with both his feet and hands and some luxurious cream. Each area gets about a 10 minute gentle massage to help ease the sloughing off of skin. The palms and bottom of the feet seem to be taking on an odd process of peeling. The skin is very thick and hard that is coming off. These were the last areas of the rash and the most painful burning, without a doubt. So it is interesting that these areas are peeling differently. I really cannot fully describe it without possibly making someone sick. So I will leave well enough alone. In all this B's attitude is still hold up. He doesn't like the sick stomach feeling and that keeps him down, but his mind and spirit are still in tack and on a mission to get well. Once again I attribute this to his faith and that of all those who are keep B in prayer. You all have my deepest gratitude.
Until next time,
Hopeful Believer.
Monday, March 21, 2011
Mar 21, Day +51 March Madness
"Just the Facts"-- Labs and blood work look good, counts are holding, but feel terrible, extremely weak, declining in the ability to eat and drink, stomach problems decrease the ability to walk.
So it seemed that we were going along just fine, right? But, I have learned not to ask, What's next? We are very happy about the blood counts coming back on a regular basis, holding at good levels. So you wonder why we are feeling so bad. B is on a lot more medicine from this last hiccup with the yellow eyes. That "bad medicine" was super aggressive in causing a problem and we are slowly working our way back from that problem, but the work is arduous. The medicines doubled, they are harder to take than before, and we have new stomach problems that have not been felt before. To top it off we still go to infusion every day for an IV of the other type of medicine to counter act the bad stuff. So it was a long few days since I last posted. Each day B is feeling a little worse. We should be celebrating, but just cannot connect that with how he feels.
You may have noticed that we past the midway point at +day 50! The first 100 days are critical for BMT patients. This is the uber watch and monitor time frame to see how it will take and what the side effects will be. We feel like we got great results, but we are experiencing our fair share of the side effects. Due to the fact that B is feeling so bad, he declined the drug trial. He just cannot imagine taking 1 more pill for any reason. So even though that sounded very promising, we will pass. I am hoping to see an improvement any time now, as he cannot go very long without eating, not at his current weight. So any prayers you could spare, we will gladly accept and very much appreciate. Thank you for your care and faithfulness.
Until next time,
Hopeful Believer
So it seemed that we were going along just fine, right? But, I have learned not to ask, What's next? We are very happy about the blood counts coming back on a regular basis, holding at good levels. So you wonder why we are feeling so bad. B is on a lot more medicine from this last hiccup with the yellow eyes. That "bad medicine" was super aggressive in causing a problem and we are slowly working our way back from that problem, but the work is arduous. The medicines doubled, they are harder to take than before, and we have new stomach problems that have not been felt before. To top it off we still go to infusion every day for an IV of the other type of medicine to counter act the bad stuff. So it was a long few days since I last posted. Each day B is feeling a little worse. We should be celebrating, but just cannot connect that with how he feels.
You may have noticed that we past the midway point at +day 50! The first 100 days are critical for BMT patients. This is the uber watch and monitor time frame to see how it will take and what the side effects will be. We feel like we got great results, but we are experiencing our fair share of the side effects. Due to the fact that B is feeling so bad, he declined the drug trial. He just cannot imagine taking 1 more pill for any reason. So even though that sounded very promising, we will pass. I am hoping to see an improvement any time now, as he cannot go very long without eating, not at his current weight. So any prayers you could spare, we will gladly accept and very much appreciate. Thank you for your care and faithfulness.
Until next time,
Hopeful Believer
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