Things have been good over the weekend. I didn't have any fevers and felt great. Having nice weather for the first time in a few weeks was definitely a plus, and the family got to spend a lot of time outdoors. I did have to take some pain meds because of the back pain that comes with my neupogen shots, but thats not too big a deal.
At NIH today I didn't get the biopsy that the doctors told me they wanted. My lab results showed that my neutrophil count had risen significantly to 5.3, from .06 on Thursday. That makes the risk of infection a lot less likely, so its good to be out of the woods there.
The reason the doctors were thinking about pushing the bone marrow biopsy up to today was because I hadn't reacted to the neupogen shots last week. Since the shots apparently worked over the weekend, they decided to wait until the biopsy would be normally scheduled, which will be in two weeks. So I didn't have to deal with the pain today, but its still in the plans. Since I was taking the neupogen to create new neutrophil cells, the biopsy would likely show mostly new cells. The doctors hope by waiting a few weeks they will be able to get a more natural look at my bone marrow production, and hopefully see more mature blood cells.
Everything else seems to be good for now. My platelets bumped back up over 100, and my hemoglobin is over 10 for the first time in a while. The hemoglobin is especially good news in my mind, because the closer that gets to normal, the more energy I should have. With Isaiah at school today, Kate and I were able to take a quick bike ride this afternoon. I definitely had the energy and the lungs for it, but my leg muscles aren't in shape. Hopefully with better weather on the way, more outdoor activities will speed up my return to normal health.
Showing posts with label hemoglobin. Show all posts
Showing posts with label hemoglobin. Show all posts
Monday, March 9, 2009
Monday, January 12, 2009
Day +26(I think)
Looks like being at home is making me a little less eager to post updates. I think when I was inpatient, the internet was one of my few forms of entertainment most of the time, and I didn't have to leave my bed to access it. At home I haven't always had the energy to sit in front of the computer and type, and I also have more space to roam and Isaiah and Kate to socialize with. Anyways...heres what has happened since I've been home.
About 12 hours after getting home from NIH last week, Kate and I were getting up to get Isaiah off to school and then to my clinic appointment Thursday morning. Everything at the clinic went pretty well. Its the same place I've been going for my clinic visits with the chemo team, so I'm already familiar with a lot of the staff. The visit took a few hours, and most of that was waiting around. Most things looked good from the doctor's standpoint, but I did have to stay a few extra hours to receive IV potassium. It was a pretty simple visit, but it was hard to try and adjust my schedule from being an inpatient who barely got to sleep before 6 AM, to an outpatient who had to be up by that hour.
At home that night I got a call about my Tacrolimus level. That test result takes a few hours to reach, so they didn't have it for me before I left the hospital. Apparently my Tacrolimus level was 22, when they want it between 5 and 10. The highest I had been during my inpatient stay was 16, so that was shocking to me. I didn't feel any symptoms, so that was good. They wanted me to come in the following morning to have my level redrawn. So that was a bit upsetting to have to head back to NIH on Friday, when I was expecting not to be heading anywhere that day.
My Tacro level on Friday was 9.8, which was reasonable. They had me cut my dose in half, which is no problem with me, and apparently today that level is still good.
My two main issues...the bladder and GI tract, were not exactly making me feel good on Friday. I felt like I was constantly heading to the bathroom on Friday, and I was worried that if things continued I would have to head back over to NIH. However, by Saturday afternoon the GI issue was a lot better, and by Sunday I almost felt like normal. During that time my appetite got a lot better. I was able to eat 3 meals Saturday, Sunday, and today. Kate was extremely excited yesterday at how well I was eating. She could notice the improvement in how I felt based on how I ate, and I noticed it by my less frequent trips to the bathroom.
Today was a visit to the day hospital, where I had my blood drawn and a chest X-ray. The blood results came back extremely positive, and I didn't have to receive any supplemental IVs. My hemoglobin was a little low, so I might need a blood transfusion some time soon if it continues to drop or I start feeling symptoms of anemia. However, I felt really good today. At one point I ran up the stairs without thinking. As I got to the top of the steps, I was surprised by what I had just done. I hadn't forced myself to do it, but it just came naturally. That was great progress for me, especially since the climbing of the stairs was a big adjustment on my muscles after not heading up a single stair during my entire hospital stay.
Right now I am feel very good. I am still way more tired than I would regularly feel, but the issues I did have are clearing up, and no new ones have come up. I am extremely positive with my progress, but my doctor did throw in a reminding thought today that we are still early in this progress, and potential problems could still come up. Moving forward this week, my family and I would like everybody's prayers to focus on great results from the PET scan I will have on Thursday. What is seen from that scan will likely determine what changes if any are needed for my course of treatment.
Its great to be home, and to feel my body improving. Sorry to anybody who was disappointed by the large gap in updates, but take it as a good sign that I am living my life a lot more than I was while in the hospital.
About 12 hours after getting home from NIH last week, Kate and I were getting up to get Isaiah off to school and then to my clinic appointment Thursday morning. Everything at the clinic went pretty well. Its the same place I've been going for my clinic visits with the chemo team, so I'm already familiar with a lot of the staff. The visit took a few hours, and most of that was waiting around. Most things looked good from the doctor's standpoint, but I did have to stay a few extra hours to receive IV potassium. It was a pretty simple visit, but it was hard to try and adjust my schedule from being an inpatient who barely got to sleep before 6 AM, to an outpatient who had to be up by that hour.
At home that night I got a call about my Tacrolimus level. That test result takes a few hours to reach, so they didn't have it for me before I left the hospital. Apparently my Tacrolimus level was 22, when they want it between 5 and 10. The highest I had been during my inpatient stay was 16, so that was shocking to me. I didn't feel any symptoms, so that was good. They wanted me to come in the following morning to have my level redrawn. So that was a bit upsetting to have to head back to NIH on Friday, when I was expecting not to be heading anywhere that day.
My Tacro level on Friday was 9.8, which was reasonable. They had me cut my dose in half, which is no problem with me, and apparently today that level is still good.
My two main issues...the bladder and GI tract, were not exactly making me feel good on Friday. I felt like I was constantly heading to the bathroom on Friday, and I was worried that if things continued I would have to head back over to NIH. However, by Saturday afternoon the GI issue was a lot better, and by Sunday I almost felt like normal. During that time my appetite got a lot better. I was able to eat 3 meals Saturday, Sunday, and today. Kate was extremely excited yesterday at how well I was eating. She could notice the improvement in how I felt based on how I ate, and I noticed it by my less frequent trips to the bathroom.
Today was a visit to the day hospital, where I had my blood drawn and a chest X-ray. The blood results came back extremely positive, and I didn't have to receive any supplemental IVs. My hemoglobin was a little low, so I might need a blood transfusion some time soon if it continues to drop or I start feeling symptoms of anemia. However, I felt really good today. At one point I ran up the stairs without thinking. As I got to the top of the steps, I was surprised by what I had just done. I hadn't forced myself to do it, but it just came naturally. That was great progress for me, especially since the climbing of the stairs was a big adjustment on my muscles after not heading up a single stair during my entire hospital stay.
Right now I am feel very good. I am still way more tired than I would regularly feel, but the issues I did have are clearing up, and no new ones have come up. I am extremely positive with my progress, but my doctor did throw in a reminding thought today that we are still early in this progress, and potential problems could still come up. Moving forward this week, my family and I would like everybody's prayers to focus on great results from the PET scan I will have on Thursday. What is seen from that scan will likely determine what changes if any are needed for my course of treatment.
Its great to be home, and to feel my body improving. Sorry to anybody who was disappointed by the large gap in updates, but take it as a good sign that I am living my life a lot more than I was while in the hospital.
Tuesday, December 30, 2008
Day +13
Today was a little more exciting than yesterday, but not by much. My absolute neutrophil count rose by about 100 this morning. Thats in the right direction but not as much as I would have liked. As usual, the reports from the doctors were all positive. It seems like my discharge date has been scheduled for Friday. So if everything goes well for the next few days I should be home by the weekend!
My platelets held steady from yesterday to today, so the Doctor shared that he didn't think I needed a platelet transfusion. I reported that I hadn't had any major nosebleeds for a few days, so he was happy with that. Then he asked me to sit up so he could check my back for any rashes, and a drop of blood dripped out of my nose. He turned to the other doctor on rounds with him and said, "I guess we should go ahead and order platelets anyways."
I also got two units of blood, although my hemoglobin was only in the 9's. I'm used to 9's being high for my hemoglobin, so its kind of funny that they infuse me inpatient when they are at that level. Oh well...if it gives me more energy, then I'll take it.
Everything else seems to be going well, and its encouraging to know where the finish line is. Tommorow will be two weeks since the transplant, and I can't believe how time has flown by. It feels like forever since I've been at work or at home, but at least I haven't been bored too much in here.
My platelets held steady from yesterday to today, so the Doctor shared that he didn't think I needed a platelet transfusion. I reported that I hadn't had any major nosebleeds for a few days, so he was happy with that. Then he asked me to sit up so he could check my back for any rashes, and a drop of blood dripped out of my nose. He turned to the other doctor on rounds with him and said, "I guess we should go ahead and order platelets anyways."
I also got two units of blood, although my hemoglobin was only in the 9's. I'm used to 9's being high for my hemoglobin, so its kind of funny that they infuse me inpatient when they are at that level. Oh well...if it gives me more energy, then I'll take it.
Everything else seems to be going well, and its encouraging to know where the finish line is. Tommorow will be two weeks since the transplant, and I can't believe how time has flown by. It feels like forever since I've been at work or at home, but at least I haven't been bored too much in here.
Thursday, December 11, 2008
Day -6
Today was my first day of pre-transplant chemo, and it truly was a busy day. I've had no less than two IVs running into my sytem since this morning, and as many as 5 different drugs or supplements pumping into me at one time. The pole they use to hang the IVs from is full and the tubes running from the pumps to my body are pretty confusing. However, the nurses have been through this before and everything has been pretty smooth in my opinion.
I received the Fludarabine and Cytoxin in the late morning. No problems there. I've gotten a little bit of nausea recently, but its not to the point where I think I'm going to throw up. Just a little uncomfortable. I'm also get my anti-nausea medication through an IV, and that is running most of the time. My hemoglobin was also down to 7.7 this afternoon, so I got a two unit transfusion of blood in order to bring that up. I didn't really notice the signs of having really low blood oxygen, but then again I'm not really exerting myself here in the hospital.
Today was also Isaiah's first visit to NIH. He appeared a little apprehensive about a new place when he first walked in, but he quickly made himself at home. He had a few questions about what was going on, but he has already seen Daddy go through enough chemo to understand what all the IVs are for. I had enough energy to spend time with him and fit in two games of Candyland. Probably haven't played that game since Elementary School.
Right now I am tired and about ready to fall asleep. So hopefully I have the same boring news to report tommorow! Thanks to everybody who has offered their prayers and support. It is definitely helping!
I received the Fludarabine and Cytoxin in the late morning. No problems there. I've gotten a little bit of nausea recently, but its not to the point where I think I'm going to throw up. Just a little uncomfortable. I'm also get my anti-nausea medication through an IV, and that is running most of the time. My hemoglobin was also down to 7.7 this afternoon, so I got a two unit transfusion of blood in order to bring that up. I didn't really notice the signs of having really low blood oxygen, but then again I'm not really exerting myself here in the hospital.
Today was also Isaiah's first visit to NIH. He appeared a little apprehensive about a new place when he first walked in, but he quickly made himself at home. He had a few questions about what was going on, but he has already seen Daddy go through enough chemo to understand what all the IVs are for. I had enough energy to spend time with him and fit in two games of Candyland. Probably haven't played that game since Elementary School.
Right now I am tired and about ready to fall asleep. So hopefully I have the same boring news to report tommorow! Thanks to everybody who has offered their prayers and support. It is definitely helping!
Friday, November 21, 2008
Transfusion Tomorrow
This was a quick week at work. It was fast paced and busy, which is always a nice feeling. I've felt like I've had a lot of energy, but I just got a call that my hemoglobin level is 7.9. Usually when my hemoglobin level has been that low I've felt either short of breath or had headaches, so I'm a bit surprised its that low. So it looks like I'll head into NIH tommorow for another transfusion. This is the third straight cycle of EPOCH-CR that I'll get a blood transfusion because of my red blood counts, so it is expected and pretty routine.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
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