I know I haven't posted in a while. Thank God (B"H) I'm doing well and there's really not much to report. My eyes are still pretty bad but we're working on it. I saw Dr. Schuster yesterday. My HGB, which was 8.7 two weeks ago, is now 9.7 on it's own, going up without a transfusion. That's amazing! The eye doctor suggested trying new drops. I'm giving it a try but I'm not too hopeful. Dr. Schuster said that maybe photopheresis will help. I'd love to NOT have to resort to that but we'll just have to wait and see.
I'm down to 1/4 the amount of Prograf (Tacrolimus) that I had been on. He also reduced the amount of Norvasc by 1/2, so hopefully the swelling it causes will diminish.
Tomorrow is David and my 25th wedding anniversary. We're going to spend a few days away together. I don't expect to post again here for a couple of weeks, maybe ... after my next appointment. At least, I hope not. I'd love to continue uneventfully and boringly.
Thanks to those of you still checking in. And for your continued prayers and good wishes. Believe in Miracles! They're happening all around us all, every minute of every day!
Tuesday, June 30, 2009
Monday, June 22, 2009
Monday Morning Update
Sorry I haven't posted in a while. Everything's going well, thank God. I'm going for a CBC today locally to see how my hemoglobin is doing. . . to see whether I can hold out until my appointment next Monday or if I'll have to go in this week for a transfusion. This is the longest I've gone without one. I kinda thought that the whole tranfusion thing was over. Wishful thinking, I guess.
I haven't heard any bone marrow biopsy pathology results. Nor have I heard anything from the dermatologist about the skin biopsies. I'm scheduled to go back to the dermatologist tomorrow for the suture removal but I don't think I'm going to make a special trip just for that. If I have to go in for a transfusion, then obviously I'll do both. But if I don't need to go in for blood, I'm going to a) call the dermatologist and see if the suture removal can wait until next Monday or b) have a friend remove the sutures here at home. Either way's ok with me.
I don't have too much to report. Just wanted to leave a quick update so my bestest friends/fans don't get too angry with me! Thank you again for being there.
I haven't heard any bone marrow biopsy pathology results. Nor have I heard anything from the dermatologist about the skin biopsies. I'm scheduled to go back to the dermatologist tomorrow for the suture removal but I don't think I'm going to make a special trip just for that. If I have to go in for a transfusion, then obviously I'll do both. But if I don't need to go in for blood, I'm going to a) call the dermatologist and see if the suture removal can wait until next Monday or b) have a friend remove the sutures here at home. Either way's ok with me.
I don't have too much to report. Just wanted to leave a quick update so my bestest friends/fans don't get too angry with me! Thank you again for being there.
Tuesday, June 16, 2009
Tuesday Morning
I saw the doctor yesterday. My count were ok. My hemaglobin is a little low (8.7) and so he wants me to have a CBC locally next week to see if I may need some blood before my next regular appointment in 2 weeks. My platelet count is 99 and my WBCs are good. We don't have the bone marrow biopsy report yet, but what we do know is that my marrow is 100% Avram's!
I've had a purple splotchy rash on my chest and on one shoulder. I showed it to him two weeks ago and he didn't think much of it. I showed it to him again yesterday and I guess the fact that it's increasing made an impression. He sent me for a dermatologic consult. The dermatologist did a biopsy. Hopefully, it's nothing but I should have results by next week. I also have to go see the dermatologist again on Tuesday for suture removal. (Never a dull moment).
At my last visit two weeks ago, we reduced the evening dose of the Prograf (Tacrolimus) by half. As of today, I reduced the morning dose by half, as well. I'm a little worried about the possibility of GVHD flare-ups. I'll just continue to keep my eyes open for any changes.
Rachel and I had a really nice time last week. We each had a massage and a facial and then we watched the NBA Finals at Michael Jordan's 23 SportsCafe at Mohegan Sun. Rachel really enjoyed that. It was a good time.
Overall, I've been feeling well, thank God. I've been trying to stay active, trying to ride my bicycle daily. Yesterday didn't happen because I was in my Benadryl haze, having received Pentamidine again. As soon as I'm completely off the Prograf, we can start taking me off all the other stuff. I can't even imagine not taking a handful of pills numerous times a day. It seems like my way of life. I wouldn't mind getting used to a different way, though.
Thank you for checking in. I hope everything is going well in your world. Where would I be without your support? Thank you so much for your prayers. Believe in Miracles!
I've had a purple splotchy rash on my chest and on one shoulder. I showed it to him two weeks ago and he didn't think much of it. I showed it to him again yesterday and I guess the fact that it's increasing made an impression. He sent me for a dermatologic consult. The dermatologist did a biopsy. Hopefully, it's nothing but I should have results by next week. I also have to go see the dermatologist again on Tuesday for suture removal. (Never a dull moment).
At my last visit two weeks ago, we reduced the evening dose of the Prograf (Tacrolimus) by half. As of today, I reduced the morning dose by half, as well. I'm a little worried about the possibility of GVHD flare-ups. I'll just continue to keep my eyes open for any changes.
Rachel and I had a really nice time last week. We each had a massage and a facial and then we watched the NBA Finals at Michael Jordan's 23 SportsCafe at Mohegan Sun. Rachel really enjoyed that. It was a good time.
Overall, I've been feeling well, thank God. I've been trying to stay active, trying to ride my bicycle daily. Yesterday didn't happen because I was in my Benadryl haze, having received Pentamidine again. As soon as I'm completely off the Prograf, we can start taking me off all the other stuff. I can't even imagine not taking a handful of pills numerous times a day. It seems like my way of life. I wouldn't mind getting used to a different way, though.
Thank you for checking in. I hope everything is going well in your world. Where would I be without your support? Thank you so much for your prayers. Believe in Miracles!
Wednesday, June 10, 2009
Wednesday
Yesterday's bone marrow biopsy went well, Thank God. I was sedated for the procedure so I didn't feel a thing. I was very sore yesterday afternoon and evening but I'm feeling much better today. I didn't get the results yet but I'm assuming (hoping) that they'll have them by Monday's appointment.
Rachel and I are going to go away this afternoon for two nights at a spa in Connecticut. I'm really looking forward to spending this time with her, not to mention the spa treatments! I cherish experiences like these. I'll have to find something special to do with Jacob next time. Any suggestions?
My eyes are still bothering me but Dr. Schuster seems pretty sure that they're improving. Also, my feet and ankles are swelling very easily these days. Bita (PA) told me that it's most likely a side effect from the Norvasc that I'm taking for hypertension. The hypertension is a side effect of the Tacrolimus (Prograf) which we just started reducing. Hopefully, the reduction of the Prograf will get rid of the hypertension, thereby eliminating the need for the Norvasc, thereby eliminating the foot/ankle swelling. You following??
Other than that, my hair is growing a little. I'm still kinda fuzzy on top but it's definitely coming in. I'm feeling stronger and stronger every day. I'm so lucky to be surrounded by such loving and caring friends and family. Thank you all for being there and for your continued prayers.
Rachel and I are going to go away this afternoon for two nights at a spa in Connecticut. I'm really looking forward to spending this time with her, not to mention the spa treatments! I cherish experiences like these. I'll have to find something special to do with Jacob next time. Any suggestions?
My eyes are still bothering me but Dr. Schuster seems pretty sure that they're improving. Also, my feet and ankles are swelling very easily these days. Bita (PA) told me that it's most likely a side effect from the Norvasc that I'm taking for hypertension. The hypertension is a side effect of the Tacrolimus (Prograf) which we just started reducing. Hopefully, the reduction of the Prograf will get rid of the hypertension, thereby eliminating the need for the Norvasc, thereby eliminating the foot/ankle swelling. You following??
Other than that, my hair is growing a little. I'm still kinda fuzzy on top but it's definitely coming in. I'm feeling stronger and stronger every day. I'm so lucky to be surrounded by such loving and caring friends and family. Thank you all for being there and for your continued prayers.
Monday, June 08, 2009
MondayMorning
Last Thursday, Illana and I took an overnight trip to a spa in Connecticut. It was my first real "outing" since my transplant and since having the catheter removed. It was a wonderfully relaxing time! We wanted Mom to come with us but Mom had cataract surgery on Wednesday morning and really didn't feel up to it. Thank God, she's doing real well!
I had a swedish massage, a hair/scalp treatment, and a facial (non-invasive, of course). I stayed out of the hot tub, swimming pool, steam room, etc. But I did duck into the sauna for about 5 minutes. It was the first time in such a long time that I really relaxed. Now, all I want to do is go away again. I've just spent the last hour researching other places to go. I'm learning what I need to do for myself and I notice that I've had a lot more energy since returning home. Before going away, I'd usually spend my day either in bed watching TV or in my big easy chair watching TV. I wouldn't move around too much. Since coming home on Friday, the only time I've gone into bed is to go to sleep at night and I haven't spent any time at all in my big chair. AND, I rode my bike again! So, maybe I'm really on my way.
I've been noticing increasing purple splotches on my chest and abdomen. I'll show them to the doc tomorrow when I go for my bone marrow biopsy (yikes!). David has arranged to take the day off and go with me. As of now, I don't know what time it's scheduled for. I'm waiting to hear from Dr. Schuster's office.
So overall, Thank God I'm feeling pretty good. My eyes are still a mess but I seem to be getting stronger and more energetic. My blood counts seem to be holding. I pray for the improvements to continue. Thank you all for your prayers and good wishes. Thanks to my Angels who continue to work behind the scenes. Believe in miracles!
I had a swedish massage, a hair/scalp treatment, and a facial (non-invasive, of course). I stayed out of the hot tub, swimming pool, steam room, etc. But I did duck into the sauna for about 5 minutes. It was the first time in such a long time that I really relaxed. Now, all I want to do is go away again. I've just spent the last hour researching other places to go. I'm learning what I need to do for myself and I notice that I've had a lot more energy since returning home. Before going away, I'd usually spend my day either in bed watching TV or in my big easy chair watching TV. I wouldn't move around too much. Since coming home on Friday, the only time I've gone into bed is to go to sleep at night and I haven't spent any time at all in my big chair. AND, I rode my bike again! So, maybe I'm really on my way.
I've been noticing increasing purple splotches on my chest and abdomen. I'll show them to the doc tomorrow when I go for my bone marrow biopsy (yikes!). David has arranged to take the day off and go with me. As of now, I don't know what time it's scheduled for. I'm waiting to hear from Dr. Schuster's office.
So overall, Thank God I'm feeling pretty good. My eyes are still a mess but I seem to be getting stronger and more energetic. My blood counts seem to be holding. I pray for the improvements to continue. Thank you all for your prayers and good wishes. Thanks to my Angels who continue to work behind the scenes. Believe in miracles!
Tuesday, June 02, 2009
Tuesday Morning
I had an appointment yesterday that, thank God went very well. Dr. Schuster said that I've "turned a corner." My numbers are doing well -- WBC 5.5, HGB 10.2, PLT 110 -- so no transfusions necessary. I had a pulmonary function test yesterday as well as the Benadryl/Pentamidine. Needless to say, I spent the rest of the day sleeping. I think I was supposed to go for a chest x-ray too, but I forgot about it! I need to go back sometime this week for an echo cardiogram anyway, so I guess I can get the chest x-ray then.
I'm scheduled for a bone marrow biopsy on June 9. This will be the first time I'm having it done under anesthesia so, even though I'm still dreading it, I'm dreading it less than usual.
My eyes are still bothering me. The doctor said that he sees some improvement but I don't really think so. I've already tried two different strengths of eyedrops to no avail. I'm hoping that they'll improve with time.
Other than that, I rode my bicycle for the first time of Sunday -- just around the neighborhood, but it was great! It felt really, really good. I'm might try to do it again today if I can get myself together.
I'm so grateful to all of you who keep on checking in to catch up. I am blessed with the greatest family, the best friends and the most loyal "lurkers". And I can't, for one minute, forget my Dad and Grammy who are always, ALWAYS looking out for me. Thank you all. Believe in Miracles!!
I'm scheduled for a bone marrow biopsy on June 9. This will be the first time I'm having it done under anesthesia so, even though I'm still dreading it, I'm dreading it less than usual.
My eyes are still bothering me. The doctor said that he sees some improvement but I don't really think so. I've already tried two different strengths of eyedrops to no avail. I'm hoping that they'll improve with time.
Other than that, I rode my bicycle for the first time of Sunday -- just around the neighborhood, but it was great! It felt really, really good. I'm might try to do it again today if I can get myself together.
I'm so grateful to all of you who keep on checking in to catch up. I am blessed with the greatest family, the best friends and the most loyal "lurkers". And I can't, for one minute, forget my Dad and Grammy who are always, ALWAYS looking out for me. Thank you all. Believe in Miracles!!
Subscribe to:
Comments (Atom)