Hi. I was just informed that there is an EMERGENCY BLOOD SHORTAGE and there is a BLOOD DRIVE tomorrow, that's Sunday February 1, 7:30AM-1:00PM at the YOUNG ISRAEL OF WOODMERE on Peninsula Boulevard in Woodmere. If you can give, please do. It is truly the gift of life. (And being transfusion dependent at this time, just hearing the words "blood shortage" makes me feel a little insecure). Thank you.
I am feeling a little better. I don't know if it's attributable to the reduction in Prednisone, the elimination of the Valcyte, the transfusion on Thursday, or a combination thereof ... I'd wager it's the combo. The weekend was very relaxing. David brought the stationary bike up from the basement and I've been pedaling little bits at a time and I think I feel my muscles strengthening a bit. We'll see how that goes.
Thank you for all your prayers and good wishes and for checking in on me. FYI to those who asked, my email address is:
LeahRSolomon@Gmail.com
or
LeahSol613@yahoo.com
Saturday, January 31, 2009
Friday, January 30, 2009
Friday
I just had a bit of an incident. I went to CVS to pick up my prescriptions and as I was entering the store, my legs just gave out and I ended up on my knees, unable to stand up. Thankfully, two very nice (and strong) women picked me up. It was crazy and it really shook me up. I'm sure my knees will be bruised. This muscle weakness seems to be getting worse instead of better. I'm told it's the Prednisone, but if my legs are going to buckle, that's not a good thing.
Anyway, Mom is at Illana's for the weekend. Jacob's going to a friend, too. So, it's just David, Rachel and me. Sounds like a nice, quiet weekend.
Thanks for checking in and for the continued prayers and good wishes. I hope you all have a beautiful weekend and a good shabbos. Keep believing in miracles.
Anyway, Mom is at Illana's for the weekend. Jacob's going to a friend, too. So, it's just David, Rachel and me. Sounds like a nice, quiet weekend.
Thanks for checking in and for the continued prayers and good wishes. I hope you all have a beautiful weekend and a good shabbos. Keep believing in miracles.
Thursday, January 29, 2009
Thursday Afternoon
Hi. I just got back from the hospital with good news. My CMV level is low enough that I can discontinue the Valcyte for now. If you've been following along, you know that the CMV was really on my mind and I couldn't wait to stop taking the Valcyte because it was suppressing my blood counts. So, this is indeed good news!
They also got the results of the pathology reports from last week's colonoscopy. It showed no evidence of GvHD. Also good news! Which, in turn, leads to a small reduction in the amount of prednisone I'm taking. ALSO good news!
I got 1 bag of platelets and a unit of blood and I was home by 2PM. David took me today because I was nervous to drive because I'm still too shaky and my vision was a little blurry but hopefully, with the reduction in the prednisone, I'll begin to feel some improvements. (Hopefully)
I Thank God that I got such good reports today. I so appreciate those of you praying for me and sending me good thoughts and wishes. I know that my Father and my Grandmother are helping me from wherever it is they are. I hope all of you are healthy, warm and safe. Believe in Miracles.
They also got the results of the pathology reports from last week's colonoscopy. It showed no evidence of GvHD. Also good news! Which, in turn, leads to a small reduction in the amount of prednisone I'm taking. ALSO good news!
I got 1 bag of platelets and a unit of blood and I was home by 2PM. David took me today because I was nervous to drive because I'm still too shaky and my vision was a little blurry but hopefully, with the reduction in the prednisone, I'll begin to feel some improvements. (Hopefully)
I Thank God that I got such good reports today. I so appreciate those of you praying for me and sending me good thoughts and wishes. I know that my Father and my Grandmother are helping me from wherever it is they are. I hope all of you are healthy, warm and safe. Believe in Miracles.
Wednesday, January 28, 2009
Wednesday AM
Good Morning. Today's word for the day is P-A-T-I-E-N-C-E. I must learn what that means. I'm didn't get more than a few hours of sleep and I'm still feeling quite rundown and very shaky. I know that this is all part of the road to recovery but I have to learn to be patient and not get frustrated. It's not easy.
I'm sitting in my kitchen watching the snow come down. I was hoping to get out a little today, but I think I'll stay put. I have an appointment at the hospital tomorrow morning at 9:30. I'm not even going to try to predict what I'll need.
My catheter dressing needs to be changed today. It's supposed to be done 3x/wk. Unfortunately, my insurance company will only approve home visiting nurse once/wk. The hospital does it on a Mon/Wed/Fri schedule. So, they changed it for me Mon. I'm going to have to get Mom to come and do it today (she's done it once before). And, hopefully the visiting nurse will do it Friday, with David watching, because Mom is going back down to Florida for the winter next week. That means that David will be the only who can do it here. I can flush the lines myself, but not change the dressing. Just another thing on my mind.
I have a whole list of questions to ask to Doc tomorrow. Questions about CMV and Valcyte and GvHD. And I never got the pathology results from the colonoscopy last week. Hopefully, I'll have some more answers tomorrow.
Thanks for keeping and eye on me. I hope everyone is well and warm and safe.
I'm sitting in my kitchen watching the snow come down. I was hoping to get out a little today, but I think I'll stay put. I have an appointment at the hospital tomorrow morning at 9:30. I'm not even going to try to predict what I'll need.
My catheter dressing needs to be changed today. It's supposed to be done 3x/wk. Unfortunately, my insurance company will only approve home visiting nurse once/wk. The hospital does it on a Mon/Wed/Fri schedule. So, they changed it for me Mon. I'm going to have to get Mom to come and do it today (she's done it once before). And, hopefully the visiting nurse will do it Friday, with David watching, because Mom is going back down to Florida for the winter next week. That means that David will be the only who can do it here. I can flush the lines myself, but not change the dressing. Just another thing on my mind.
I have a whole list of questions to ask to Doc tomorrow. Questions about CMV and Valcyte and GvHD. And I never got the pathology results from the colonoscopy last week. Hopefully, I'll have some more answers tomorrow.
Thanks for keeping and eye on me. I hope everyone is well and warm and safe.
Monday, January 26, 2009
Monday Evening
I'm not feeling too great today. I saw the doctor and my WBC is pretty low (2.3). My HGB is around 10 and I needed platelets. He said that the Valcyte, which I'm still taking for CMV, is suppressing my numbers but that I still need to be on it. I still have CMV, although at a very low level. If it stays where it is, we keep the Valcyte where it is. If the CMV level goes down, we can start reducing the Valcyte. But if it increases, then we have to change to a different meds. Either way, if it continues suppressing my WBC, that will have to be dealt with.
I wasn't able to sleep last night because both legs and both feet kept cramping up. I think Potassium should help and so might tonic water, so I'm drinking both.
The low WBC count explains why I don't have that energy I thought I'd have from the 2 units of blood on Thursday. Actually, I didn't really start feeling sluggish until yesterday. But today was kinda tough. I did drive to the hospital (with Mom) and Illana met us at the hospital because she had a doctor's appointment in the city as well. Keith drove her in, and I brought her home. I must not feel too bad, I guess. I did stop at the supermarket on the way home.
Hopefully, the CMV will clear up soon and I'll be able to move ahead with my recovery. I feel like I'm stalled. Also, I think I have a sore throat so I'm going to call the doctor.
I hope you're all well and safe and happy. Thank you for checking in on me. I appreciate it more than I can say.
I wasn't able to sleep last night because both legs and both feet kept cramping up. I think Potassium should help and so might tonic water, so I'm drinking both.
The low WBC count explains why I don't have that energy I thought I'd have from the 2 units of blood on Thursday. Actually, I didn't really start feeling sluggish until yesterday. But today was kinda tough. I did drive to the hospital (with Mom) and Illana met us at the hospital because she had a doctor's appointment in the city as well. Keith drove her in, and I brought her home. I must not feel too bad, I guess. I did stop at the supermarket on the way home.
Hopefully, the CMV will clear up soon and I'll be able to move ahead with my recovery. I feel like I'm stalled. Also, I think I have a sore throat so I'm going to call the doctor.
I hope you're all well and safe and happy. Thank you for checking in on me. I appreciate it more than I can say.
Saturday, January 24, 2009
Saturday Night/Midnight
We had a beautiful weekend, despite the fact that David is not here. (He took his dad on a quick vacation for his 80th birthday). But we were here with Illana and Keith and the girls and Mom. Rachel picked them up at the airport early Friday morning from their ski trip in Whistler. Illana had a ski accident up there and is currently in a neck brace. She's got to get some Ortho follow-up this week, but I think she'll be ok. Anyway, they came for dinner and overnight and went home this evening. Unfortunately, Keith seemed kinda sick and now I'm a little nervous about getting sick, myself. I'm so careful to avoid being in contact with anyone coughing, sneezing, etc. And he woke up this morning with a full blown sinus thing going on. I stayed away from him, but I'm still a little nervous.
The prednisone is still doing a job on me. Even though my evening dose has been lowered, it takes a while for the body to react. The shakiness is frustrating and the ankle/foot swelling is uncomfortable. I'm sleeping about 4 hours a night and trying not to nap during the day, although today I slept for a couple of hours. Also, I expected to have TONS of energy this weekend because of the blood I got on Thursday, but I'm not really feeling it. I did a lot of cooking on Friday and I felt fine. But I guess I was expecting more.
I'd due for another hospital appointment on Monday at 1. I doubt if I'll need blood, OR platelets for that matter. Hopefully, it'll be a quick visit.
Thank you so much for your continued support, prayers and good wishes.
The prednisone is still doing a job on me. Even though my evening dose has been lowered, it takes a while for the body to react. The shakiness is frustrating and the ankle/foot swelling is uncomfortable. I'm sleeping about 4 hours a night and trying not to nap during the day, although today I slept for a couple of hours. Also, I expected to have TONS of energy this weekend because of the blood I got on Thursday, but I'm not really feeling it. I did a lot of cooking on Friday and I felt fine. But I guess I was expecting more.
I'd due for another hospital appointment on Monday at 1. I doubt if I'll need blood, OR platelets for that matter. Hopefully, it'll be a quick visit.
Thank you so much for your continued support, prayers and good wishes.
Thursday, January 22, 2009
Thursday Night
Yesterday's colonoscopy went well. The ulcer that was there from the chemo has healed and everything looks good. They don't have the biopsy results yet to confirm or rule out GVHD but Dr. Schuster thinks that it's not. I didn't need to get any additional platelets yesterday before the procedure because my count was 75. I was back today and got 2 units of blood so I'll have a full tank for the weekend. He reduced my evening dose of Prednisone a bit, too. I'm pretty tired right now. Just wanted to give a quick update. Thank God, it's good news.
Hope you're all well. Thanks for checking in.
Hope you're all well. Thanks for checking in.
Tuesday, January 20, 2009
Tuesday Afternoon
I drove to Manhattan today. Mom went with me but I had nobody to drive me so I just did it myself. It was no problem at all. In fact, it felt great -- despite the morning rush hour traffic and only 3 hours of sleep, or so. Coming home, I drove alone because Mom stayed in the City to have lunch with a friend. Again, no problem, albeit a bit drowsy from the Benadryl they gave me in the hospital. I got 2packs of platelets. All of my numbers were good, Thank God.
I'm scheduled for the colonoscopy tomorrow at 3PM (terrible time of day, I know). So today I'm on a clear liquid diet. They want my platelets to be above 50 before the procedure so I got 2 bags today. It was 27 before the transfusions and 62 afterward. They want me in at 12:30 tomorrow because platelets don't last that long (72 hrs) and they may want to give me more directly before the procedure.
I've been having real trouble with muscle weakness, especially in my thighs. Since my hospital discharge, I have great difficulty walking up or down stairs and standing from a seated position. I had assumed that it would improve with time, but it actually seems to be getting worse. I mentioned it to Joanne today, and she told me that it's normal and that it's from the Prednisone (isn't everything?). She said that I'm going to need physical therapy. First we deal with the colonoscopy, then the PT.
That's my story and I'm stickin' to it. I hope you're all well and safe and warm. Thanks for all the love & prayers.
I'm scheduled for the colonoscopy tomorrow at 3PM (terrible time of day, I know). So today I'm on a clear liquid diet. They want my platelets to be above 50 before the procedure so I got 2 bags today. It was 27 before the transfusions and 62 afterward. They want me in at 12:30 tomorrow because platelets don't last that long (72 hrs) and they may want to give me more directly before the procedure.
I've been having real trouble with muscle weakness, especially in my thighs. Since my hospital discharge, I have great difficulty walking up or down stairs and standing from a seated position. I had assumed that it would improve with time, but it actually seems to be getting worse. I mentioned it to Joanne today, and she told me that it's normal and that it's from the Prednisone (isn't everything?). She said that I'm going to need physical therapy. First we deal with the colonoscopy, then the PT.
That's my story and I'm stickin' to it. I hope you're all well and safe and warm. Thanks for all the love & prayers.
Monday, January 19, 2009
T+56
Good morning,
I'm beginning to feel a bit sluggish today. I guess my hemoglobin is beginning to drop a bit. I will find out tomorrow. Unfortunately, a friend of mine passed away yesterday and I am going to a funeral this afternoon. I am still in shock. I don't have many details about what happened to her and I had no idea that she was so sick! (I had heard she had back problems). I'm very sad.
I'm taking a lot of different medications --- 25 pills a day. I'm not quite sure which ones have which side effects, but I'm inclined to blame everything on the Prograf and the Prednisone. Since they've increased the Prednisone for the intestinal issues, my hands tremble so much, my fingertips are cracking, I'm once again very moody, very, very puffy (think Michelin Man). Not a pretty picture.
On the bright side, my sleep is fairly good. I get a good solid 4-5 hours a night which somehow suits me fine. Funny, before the transplant, if I didn't sleep 7-8 hours, I could barely function.
I think today will be difficult because of the previously stated circumstances but Rachel and Jacob are both home and they're both so helpful and supportive. I'm a very lucky lady.
I hope you're all well and warm. Thank you so much to keeping an eye on me and for all of your prayers and good wishes for my recovery. It means more to me than I can say.
I'm beginning to feel a bit sluggish today. I guess my hemoglobin is beginning to drop a bit. I will find out tomorrow. Unfortunately, a friend of mine passed away yesterday and I am going to a funeral this afternoon. I am still in shock. I don't have many details about what happened to her and I had no idea that she was so sick! (I had heard she had back problems). I'm very sad.
I'm taking a lot of different medications --- 25 pills a day. I'm not quite sure which ones have which side effects, but I'm inclined to blame everything on the Prograf and the Prednisone. Since they've increased the Prednisone for the intestinal issues, my hands tremble so much, my fingertips are cracking, I'm once again very moody, very, very puffy (think Michelin Man). Not a pretty picture.
On the bright side, my sleep is fairly good. I get a good solid 4-5 hours a night which somehow suits me fine. Funny, before the transplant, if I didn't sleep 7-8 hours, I could barely function.
I think today will be difficult because of the previously stated circumstances but Rachel and Jacob are both home and they're both so helpful and supportive. I'm a very lucky lady.
I hope you're all well and warm. Thank you so much to keeping an eye on me and for all of your prayers and good wishes for my recovery. It means more to me than I can say.
Saturday, January 17, 2009
Saturday Night
I had a very nice, relaxing day at home with family today. Mom's here for the weekend. Yesterday's hospital visit went quickly and smoothly. I received one pack of platelets and was home by 12:30. Still had time to prepare for dinner. Avram and Mary Ellen came for dinner. It was very nice.
I'm feeling pretty good...Slept pretty well last night. Thank God that there's nothing sinister to report.
The visiting nurse should be here on Monday to change my dressing and flush the central line. Tuesday I have an appointment for platelet transfusion (maybe blood). Wednesday I'll probably have more platelets and then the colonoscopy. So far, that's the schedule.
I hope you're all warm, safe and healthy. Believe in miracles and pray for peace.
I'm feeling pretty good...Slept pretty well last night. Thank God that there's nothing sinister to report.
The visiting nurse should be here on Monday to change my dressing and flush the central line. Tuesday I have an appointment for platelet transfusion (maybe blood). Wednesday I'll probably have more platelets and then the colonoscopy. So far, that's the schedule.
I hope you're all warm, safe and healthy. Believe in miracles and pray for peace.
Thursday, January 15, 2009
Thursday Night
I was feeling pretty energetic and ambitious today. I did a couple of things around the house that I've been wanting to get to. Then I cooked, and cooked some more, and cooked some more. Since I'm going to be at the hospital tomorrow for platelets again, I decided to cook for the weekend today. But, the funny thing is, I'm so totally enjoying cooking. I think it's because of my brother's stem cells. In case you don't know, my brother is a CHEF. Since I got his stem cells, I'm dying to cook. Interesting, right??
The downside to all of this productive work is that my ankles swell terribly when I'm on my feet too long. And I was definitely on my feet too long today. I know it's from the meds but it gets very uncomfortable and, although I still have some dishes to wash out, I'm laying down now with my feet up. I was also planning on showering this evening, but I'm kinda wiped out. Showering with the central line catheter is not easy. It's got to be all wrapped up and taped and completely waterproof. And the showering itself, even though I have a shower chair, is exhausting. OK. Enough complaining!
It was a pretty good day. Hospital tomorrow morning at 9. Don't know when I'll be home. I'll try to post something afterwards, but maybe not until Saturday Night.
Wishing you all good health and a beautiful weekend. Believe in miracles and pray for peace.
The downside to all of this productive work is that my ankles swell terribly when I'm on my feet too long. And I was definitely on my feet too long today. I know it's from the meds but it gets very uncomfortable and, although I still have some dishes to wash out, I'm laying down now with my feet up. I was also planning on showering this evening, but I'm kinda wiped out. Showering with the central line catheter is not easy. It's got to be all wrapped up and taped and completely waterproof. And the showering itself, even though I have a shower chair, is exhausting. OK. Enough complaining!
It was a pretty good day. Hospital tomorrow morning at 9. Don't know when I'll be home. I'll try to post something afterwards, but maybe not until Saturday Night.
Wishing you all good health and a beautiful weekend. Believe in miracles and pray for peace.
Wednesday, January 14, 2009
Wednesday Night
This has been a very full day. I was at the hospital from 9am until about 3:30pm. I got one unit of blood and platelets. Next Wednesday I'm scheduled for a colonoscopy and an endoscopy. But before they do that, they have to bring up my platelet count to reduce the chance of complication from bleeding. So, I'm going to get platelets again on Friday and then again on Tuesday.
After I got home from the hospital, Rachel and I went to the supermarket. Another milestone. It was great - A little more independence.
As I was sitting in a treatment room getting transfused, I was thinking about how lucky I was. I needed blood and there was blood to be had. It got me thinking about how amazing it is that there are people who donate blood or blood platelets or whatever. I mean, I was in one room with 8 chairs on a floor with many treatment rooms all full of chairs, full of people. And that's just one hospital in one city. So, I just want to thank all of you who DO donate blood. It's truly the gift of life!
After I got home from the hospital, Rachel and I went to the supermarket. Another milestone. It was great - A little more independence.
As I was sitting in a treatment room getting transfused, I was thinking about how lucky I was. I needed blood and there was blood to be had. It got me thinking about how amazing it is that there are people who donate blood or blood platelets or whatever. I mean, I was in one room with 8 chairs on a floor with many treatment rooms all full of chairs, full of people. And that's just one hospital in one city. So, I just want to thank all of you who DO donate blood. It's truly the gift of life!
Tuesday, January 13, 2009
Tuesday
Unfortunately, they can't ALL be good days, I guess. I'm not feeling so well today. My stomach has been really bothering me since last night (really since Saturday night) and so I didn't get much sleep at all. I just spoke to the doctor and I'm going tomorrow instead of Thursday. They also increased the Prednisone which is going to make me crazy.
I suppose this is just the way it's going to be for a while, good days and not as good days.
I suppose this is just the way it's going to be for a while, good days and not as good days.
Monday, January 12, 2009
Monday Afternoon
Hi. I saw the doctor this morning. Thank God everything's good. I got platelets and I'm scheduled for more blood on Thursday. Also, he said that the CMV (virus) level has already been reduced to the point where we may be able to discontinue the Valcyte on Thursday.
I'm a bit tired because for some reason I woke up at 4:30am and that was it for the night. I may have to take a little nap today but I don't want to get into the habit of a daytime nap and then half a night's sleep. I guess I'll let my body make the decision for me. If I fall asleep, so be it.
Oh! Also, yesterday was the first time I went anywhere other than to the doctor. I went over to Mom's to go through some of my Grandmother's things. Even though I didn't drive there (Illana did) it was really a milestone. And then today, I DROVE to Bed, Bath & Beyond -- which thankfully was empty -- and picked up a couple of things. It was only for about 10 minutes, but it felt good to be a little independent. (Might also explain why I'm so tired).
Hoping this finds you all healthy, happy & warm. Believe in miracles and pray for peace.
I'm a bit tired because for some reason I woke up at 4:30am and that was it for the night. I may have to take a little nap today but I don't want to get into the habit of a daytime nap and then half a night's sleep. I guess I'll let my body make the decision for me. If I fall asleep, so be it.
Oh! Also, yesterday was the first time I went anywhere other than to the doctor. I went over to Mom's to go through some of my Grandmother's things. Even though I didn't drive there (Illana did) it was really a milestone. And then today, I DROVE to Bed, Bath & Beyond -- which thankfully was empty -- and picked up a couple of things. It was only for about 10 minutes, but it felt good to be a little independent. (Might also explain why I'm so tired).
Hoping this finds you all healthy, happy & warm. Believe in miracles and pray for peace.
Saturday, January 10, 2009
Saturday Night
Hi. It's Saturday night and I'm thrilled to report that I'm feeling pretty well, Thank God. Last night during dinner, I started feeling strange. My lips were tingling and I just didn't feel right. Then I realized that I had forgotten to take my afternoon dose of Hydralazine (Blood Pressure Med). Wow! I couldn't believe how it affected me. So I took it and within 30-45 minutes I was feeling much better. I think maybe I'll be more diligent in the future.
I'm also pleased to report that the CMV meds that scared me so, don't seem to have any noticeable side effects as of yet.
I do notice that my face is a little puffy from the Prednisone and my ankles still swell when I'm on my feet for any significant period of time. But if I elevate them for a little while they go back to normal.
All in all, a pretty good report!
I hope you're all safe, healthy & warm on this snowy NY evening. Believe in miracles and pray for peace.
I'm also pleased to report that the CMV meds that scared me so, don't seem to have any noticeable side effects as of yet.
I do notice that my face is a little puffy from the Prednisone and my ankles still swell when I'm on my feet for any significant period of time. But if I elevate them for a little while they go back to normal.
All in all, a pretty good report!
I hope you're all safe, healthy & warm on this snowy NY evening. Believe in miracles and pray for peace.
Friday, January 09, 2009
T+46
Good morning. If you happened to read yesterday's blog post, you know that I was feeling really anxious about the CMV and the treatment for it. Thanks to my friend Marsha, by the time I went to sleep last night, I was much less anxious. She's been down this road and has helped me more than words can say. Also, David (hubby) spoke to a "doctor friend" who's familiar with the virus and the treatment and also set my mind at ease. I started the new meds this morning and I'm ok with it.
Your support via comments on my blog have been so inspirational and uplifting for me. I've been able to stay positive because of you. I know many of you have asked me questions, etc. I don't have email addresses for so many of you and so it's difficult to respond. I also know that many of you do not want to write to me in a "public forum". Please, feel free to email me at leahrsolomon@gmail.com.
I'm looking forward to a relaxing, quiet weekend at home...watching snowflakes (I hope). I wish you all a beautiful, healthy, peaceful weekend.
L
Your support via comments on my blog have been so inspirational and uplifting for me. I've been able to stay positive because of you. I know many of you have asked me questions, etc. I don't have email addresses for so many of you and so it's difficult to respond. I also know that many of you do not want to write to me in a "public forum". Please, feel free to email me at leahrsolomon@gmail.com.
I'm looking forward to a relaxing, quiet weekend at home...watching snowflakes (I hope). I wish you all a beautiful, healthy, peaceful weekend.
L
Thursday, January 08, 2009
New developments
Hi. I got home from the hospital by 3:30 today. At least it wasn't another marathon day. Due to the fact that I was typed and cross-matched for blood on Tuesday, there's no need to redo it as long as it's within 72 hours. So, as soon as I had my blood tests, they were able to start the transfusions. Again, I received a pack of platelets and 2 units of blood. My HGB was 8.3 and my platelets were 15. A definite improvement over Tuesday but still too low.
The doctor came and spoke to me and told me that I have CMV (Cytomegalovirus). He said that the test for CMV is very sensitive and that it shows up very early ... which, as I understand it, is good. Because it can be life threatening in immuno-compromised patients (Like Me). So, I've been taken off Valtrex (anti-viral med) and put on Valcyte. Doing internet research on drugs can be a very scary thing. The adverse reactions and side effects from this Valcyte is really freaking me out. PLUS the doc said that this drug messes around with the blood counts. I don't know. I guess I'm a little anxious about it. But he said that they're going to monitor me very closely now. I go back on Monday.
Also, I noticed my skin seems a little flushed. I don't have a fever, but my entire body looks a little sunburned. I mentioned it to him and he said that he did notice it last time and is aware of it and is watching it. In addition, my ankles are still swollen which he attributed to the water-retention from the Prednisone. AND Illana told me that the whites of my eyes looked very yellow to her. Doc said that it's from the anemia and will clear up. Liver is fine...no jaundice.
So, I know I'm rambling a bit but I have all this on my mind and that's kinda what this blog is for. Thanks for listening, caring, sending those good wishes, and praying. I love you guys.
The doctor came and spoke to me and told me that I have CMV (Cytomegalovirus). He said that the test for CMV is very sensitive and that it shows up very early ... which, as I understand it, is good. Because it can be life threatening in immuno-compromised patients (Like Me). So, I've been taken off Valtrex (anti-viral med) and put on Valcyte. Doing internet research on drugs can be a very scary thing. The adverse reactions and side effects from this Valcyte is really freaking me out. PLUS the doc said that this drug messes around with the blood counts. I don't know. I guess I'm a little anxious about it. But he said that they're going to monitor me very closely now. I go back on Monday.
Also, I noticed my skin seems a little flushed. I don't have a fever, but my entire body looks a little sunburned. I mentioned it to him and he said that he did notice it last time and is aware of it and is watching it. In addition, my ankles are still swollen which he attributed to the water-retention from the Prednisone. AND Illana told me that the whites of my eyes looked very yellow to her. Doc said that it's from the anemia and will clear up. Liver is fine...no jaundice.
So, I know I'm rambling a bit but I have all this on my mind and that's kinda what this blog is for. Thanks for listening, caring, sending those good wishes, and praying. I love you guys.
Wednesday, January 07, 2009
A slight improvement
Good morning. Just reporting that I'm feeling a slight improvement today, Thank God. I slept pretty well -- about 7 hours. The visiting nurse is scheduled to come this afternoon to change my dressing. Other than that, I'm going to take it real easy. Tomorrow morning I'm scheduled for another transfusion. Hopefully, after that, I'll be able to be a bit more productive.
Until later,
L
Until later,
L
Tuesday, January 06, 2009
Home from the Hospital
When I had my bloods tested this morning (9AM) it was no surprise to me that I was anemic. I was surprised however, by how low my HGB was. It was 5.7 -- an all time low for me. It took an entire day, but I received 1 pack of platelets and 2 units of blood. I'd say that my tank's about half full because I am scheduled to get more blood on Thursday. It was crazy to let me go so long without a CBC and the doctors agreed that I have to be on a twice weekly schedule. I'm still feeling very weak and fatigued but not as short of breath as I had been. This morning, even speaking was a real effort for me. The upside is that this is normal after a stem cell transplant and that there's nothing wrong.In fact, quite the contrary! According to the doc, Thank God 99-100% of my cells ARE MY BROTHER'S!!! This is very, very good news. Is this a miracle, or what?!
I'm going to sign off for now. Thanks for all your good wishes.
Monday, January 05, 2009
Really draggin' today
Hi. I guess I understand how vampires feel when they're thirsty. I'm very much looking forward to tomorrow when I expect to be transfused. At least I'm sleeping better, so there's a silver lining here. I've put myself pretty much on bedrest since I get out of breath so easily.
Hopefully tomorrow's post (probably late afternoon) will have more energy.
Until then,
L
Hopefully tomorrow's post (probably late afternoon) will have more energy.
Until then,
L
Sunday, January 04, 2009
T+41
Good Morning. Sorry I didn't update yesterday. I wasn't feeling very well.
I did a bit of cooking on Friday and Mom and the Bodners took care of the rest. Avram, Mary Ellen and Elliot came for Dinner. Rachel's friend walked over after dinner and then on Saturday, Gitti stopped by, The Hefters stopped by, Avram's family came for lunch. Then Sheila, Rachel's friend, Illana, Keith and Nava came. Today my father-in-law is coming. It's wonderful to see everyone and spend some time but, to be honest I'm feeling a bit overwhelmed and exhausted. At least I was able to take a small nap on Saturday afternoon and I did get a few hours of sleep last night.
To my friends and family that have been calling and requesting visitation rights, please forgive me a little while longer.
Friday night, my ankles were double their normal size. Saturday night, they were swollen as well and I was extremely fatigued and short of breath. I called the doctor on Saturday night and he felt that, depending on how badly I was feeling, I had a couple of options. I could either go to the ER and get transfused, I could wait until Monday to go to the doctor (one day earlier than my scheduled appointment), or wait until my scheduled appointment on Tuesday. So far, I'm not going to the ER. I'm going to try to hold out but if I do begin to feel worse, I would consider it.
So, for now, I'm dealing with the symptoms of the anemia. It's not unexpected. It's par for the course. Hopefully, as per my friend Marsha who has been through this, after getting transfused, once my hemoglobin is back in double-digits, I should have some energy again. I'm looking forward to it.
Wishing you all good health and peace.
xoxo
L
I did a bit of cooking on Friday and Mom and the Bodners took care of the rest. Avram, Mary Ellen and Elliot came for Dinner. Rachel's friend walked over after dinner and then on Saturday, Gitti stopped by, The Hefters stopped by, Avram's family came for lunch. Then Sheila, Rachel's friend, Illana, Keith and Nava came. Today my father-in-law is coming. It's wonderful to see everyone and spend some time but, to be honest I'm feeling a bit overwhelmed and exhausted. At least I was able to take a small nap on Saturday afternoon and I did get a few hours of sleep last night.
To my friends and family that have been calling and requesting visitation rights, please forgive me a little while longer.
Friday night, my ankles were double their normal size. Saturday night, they were swollen as well and I was extremely fatigued and short of breath. I called the doctor on Saturday night and he felt that, depending on how badly I was feeling, I had a couple of options. I could either go to the ER and get transfused, I could wait until Monday to go to the doctor (one day earlier than my scheduled appointment), or wait until my scheduled appointment on Tuesday. So far, I'm not going to the ER. I'm going to try to hold out but if I do begin to feel worse, I would consider it.
So, for now, I'm dealing with the symptoms of the anemia. It's not unexpected. It's par for the course. Hopefully, as per my friend Marsha who has been through this, after getting transfused, once my hemoglobin is back in double-digits, I should have some energy again. I'm looking forward to it.
Wishing you all good health and peace.
xoxo
L
Friday, January 02, 2009
T+39
Good morning. I can't believe I'm almost at the 40-day post-transplant mark! Nor can I believe how much stronger I'm feeling now than I had been for years before the transplant. It's such a miracle!
I've started doing more and more around the house. No "housework" yet, per se. But I've started cooking a bit, which I enjoy. So far, I've had a lot of help with the clean-up which I truly need because by the time I finish preparing, I'm pretty wiped out. Last night's dinner turned out to be really, really nice because Mom, Illana , Keith and Nava joined us. It felt normal and comfortable and I really enjoyed it.
The visiting nurse is supposed to be coming today. Actually, she said she would call sometime yesterday to tell me what time but....I never heard from her. But, then again, it WAS New Years Day so I'm going to cut her some slack. I guess if I don't hear from her, Mom, David and I can just figure it all out ourselves. We have been trained to do it, but haven't on our own yet. It's a little frustrating for me and I am a little nervous about it, but I think it'll be okay. Adding to my anxiety is the fact that I haven't seen the doctor since Monday and am not due to see him again until Tuesday. This is the longest stretch, so far.
Mom is coming for the weekend and Avram is coming for dinner tonight. I haven't seen him in a while but I speak to him practically every day. It'll be nice to see him.
Thank you so much for your prayers and good wishes. Wishing you all a beautiful weekend. Believe in miracles. Pray for peace.
I've started doing more and more around the house. No "housework" yet, per se. But I've started cooking a bit, which I enjoy. So far, I've had a lot of help with the clean-up which I truly need because by the time I finish preparing, I'm pretty wiped out. Last night's dinner turned out to be really, really nice because Mom, Illana , Keith and Nava joined us. It felt normal and comfortable and I really enjoyed it.
The visiting nurse is supposed to be coming today. Actually, she said she would call sometime yesterday to tell me what time but....I never heard from her. But, then again, it WAS New Years Day so I'm going to cut her some slack. I guess if I don't hear from her, Mom, David and I can just figure it all out ourselves. We have been trained to do it, but haven't on our own yet. It's a little frustrating for me and I am a little nervous about it, but I think it'll be okay. Adding to my anxiety is the fact that I haven't seen the doctor since Monday and am not due to see him again until Tuesday. This is the longest stretch, so far.
Mom is coming for the weekend and Avram is coming for dinner tonight. I haven't seen him in a while but I speak to him practically every day. It'll be nice to see him.
Thank you so much for your prayers and good wishes. Wishing you all a beautiful weekend. Believe in miracles. Pray for peace.
Thursday, January 01, 2009
Happy 2009
Good Morning. I'm sorry I didn't post yesterday. I didn't really have anything new or exciting to report and I'd hate to be a bore.
The most oustanding issue is that MOM WENT HOME. This is a mixed blessing, of course. It was a very difficult parting for both of us. As you know, Mom has been staying with me 24/7 since this entire ordeal began. Sleeping on a sleeper sofa in the hospital for almost 5 weeks and then staying here in the house. Taking care of me like the Mommy she is. Of course, I need to try to get stronger and do more and more for myself. This goes against her instincts. She really just wants to do everything for me. So, although it's probably better for me in regaining some independence, it hurts me that she may feel like she's no longer needed. OF COURSE she's needed...just on a different scale now. In addition, a few weeks before I went into the hospital, Mom had carpal tunnel release surgery. She was scheduled for a follow up appointment while I was in the hospital and so, obviously skipped her appointment to stay with me. Now, she's having trouble with the hand and needs extensive PT to get it back into fine working order. Her doc said, "Now it's time to take care of you". Gotta agree with that. Also, I know how difficult it is for her to be alone in her apartment. I hate to think of her there alone. I think I gotta get her to move in here permanently...All important things to consider.
My sleep schedule is still out of whack. Last night, I took Ambien-CR at 10PM, hoping to be asleep by 11. At a still awake 1AM, I took a Klonopin. I'm not sure how long that took to kick in, but it must've eventually. Of course, the kids were out celebrating with friends, which isn't exactly condusive to a good night's sleep. But I did sleep some and got out of bed around 8:30.
According to doctor's orders, I've restarted taking my Tacrolimus this morning at a slightly reduced dosage. Instead of 1.5mg twice daily, I'm now taking 1.0mg twice daily. I'm expecting (but hoping not to experience) the jitteriness again.
The visiting nurse was here yesterday and changed my chatheter dressing and flushed the lines. She'll be back again on Friday but I think I may have some trouble soon as my insurance doesn't really want to continue paying for home care. May have to start an appeal process. I think I have until 1/15 to deal with it.
My next appointment with the doc is on Tuesday at 9AM. He's scheduled me to get 2 units blood transfused and I think platelets too. So, I am prepared to spend a good part of the day there.
I'm hoping everyone enjoyed a safe New Years Eve celebration and and wishing you all a happy, healthy, and peaceful New Year.
The most oustanding issue is that MOM WENT HOME. This is a mixed blessing, of course. It was a very difficult parting for both of us. As you know, Mom has been staying with me 24/7 since this entire ordeal began. Sleeping on a sleeper sofa in the hospital for almost 5 weeks and then staying here in the house. Taking care of me like the Mommy she is. Of course, I need to try to get stronger and do more and more for myself. This goes against her instincts. She really just wants to do everything for me. So, although it's probably better for me in regaining some independence, it hurts me that she may feel like she's no longer needed. OF COURSE she's needed...just on a different scale now. In addition, a few weeks before I went into the hospital, Mom had carpal tunnel release surgery. She was scheduled for a follow up appointment while I was in the hospital and so, obviously skipped her appointment to stay with me. Now, she's having trouble with the hand and needs extensive PT to get it back into fine working order. Her doc said, "Now it's time to take care of you". Gotta agree with that. Also, I know how difficult it is for her to be alone in her apartment. I hate to think of her there alone. I think I gotta get her to move in here permanently...All important things to consider.
My sleep schedule is still out of whack. Last night, I took Ambien-CR at 10PM, hoping to be asleep by 11. At a still awake 1AM, I took a Klonopin. I'm not sure how long that took to kick in, but it must've eventually. Of course, the kids were out celebrating with friends, which isn't exactly condusive to a good night's sleep. But I did sleep some and got out of bed around 8:30.
According to doctor's orders, I've restarted taking my Tacrolimus this morning at a slightly reduced dosage. Instead of 1.5mg twice daily, I'm now taking 1.0mg twice daily. I'm expecting (but hoping not to experience) the jitteriness again.
The visiting nurse was here yesterday and changed my chatheter dressing and flushed the lines. She'll be back again on Friday but I think I may have some trouble soon as my insurance doesn't really want to continue paying for home care. May have to start an appeal process. I think I have until 1/15 to deal with it.
My next appointment with the doc is on Tuesday at 9AM. He's scheduled me to get 2 units blood transfused and I think platelets too. So, I am prepared to spend a good part of the day there.
I'm hoping everyone enjoyed a safe New Years Eve celebration and and wishing you all a happy, healthy, and peaceful New Year.
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