Things are going well, although not quite as boring as I would have liked. My usual appointment last Thursday went very well and Kate and I were out of the hospital fairly quickly. However, we got a call that night that my neutrophil count was around .500, which is borderline neutropenic. So the doctors wanted us to come in the next day and have my blood redrawn.
So Friday involved me heading to the hospital again and having my blood drawn. I stayed around to hear the results, and the doctors let me know that my neutrophil count had risen since the day before to .688. While that happened, somehow my white blood cells had dropped, from 2.2 to 1.8. The doctors were happy to see the neutrophils rise, since those are the infection fighters, and just warned me to be careful over the weekend and they would reevaluate on Monday during my normal visit.
So over the weekend I felt great and didn't feel any signs of infection...great news. Yesterday during the appointment, everything goes well and the labs show my white blood count had risen back to 2.2. The neutrophil count takes a longer time for the lab to process, but the doctors felt confident that the neutrophils would look good after the white cells rose. So Kate and I head home and are resting nicely around the house before I notice a message on my phone. I call back the doctor from NIH, and not only have my neutrophils dropped, but there weren't any. 0.000 Even during my chemotherapy and before my transplant, the lowest I ever saw my counts go was .006. I always had some floating around, and since I feel so great these days, I shocked that there were none. The dotors were perplexed as well.
So Kate and I made the trip over to NIH for a second time in one day, and had my blood drawn again. I was given a neupogen shot in order to boost my white blood cells and neutrophils, and was asked to come back the next day to have my blood checked again.
So this morning Kate, Isaiah, and I head over to NIH. Driving me around is already a nuisance for Kate, but doing it in the snow around the beltway wasn't exactly her idea of how to spend a morning. It took us twice as long as usual, but luckily the roads weren't too bad. I found out my results from yesterday afternoon, and my white blood cells remained the same, while I had .021 neutrophils. That ruled out an error with the labwork from yesterday morning, and indeed I had an extremely low amount of neutrophils. I had my labs done this morning, and it came back that my neutrophils held pretty much the same at .020, while my white blood cells dropped further to 1.2. The plan for now is to take the neupogen shots for the next week and see how my cells react. I stopped taking Bactrim, which is the prophylactic antibiotic that I've been given.
Apparently that medication at times can cause reactions with the immune system. I'll head back to NIH for my regularly scheduled appointment on Thursday, and hopefully this issue starts to work itself out. I had told the transplant team that I had decided to have my Hickman line removed, and the procedure was scheduled for tommorow. That will be put off for now while this is going on.
Although I feel good, it feels like somewhat of a step back to be neutropenic again. I was feeling pretty good about how I was doing, but now have to be extra cautious about what I touch and washing my hands. Although this is a little bit of a hiccup in the process, this seems like it is probably something minor compared to everything that could happen. The doctors say the results of my bone marrow biopsy were excellent, and everything looks to be growing well.
Tuesday, January 27, 2009
Thursday, January 22, 2009
Day +36
Things continue to go well at home. I am still spending almost all of my time at the house, and haven't ventured out into public that much. Cabin fever hasn't set in too badly, and my spirits are definitely up.
Last week I received a blood tranfusion because my hemoglobin level had dropped, and since then I've had a lot more energy. I find myself napping and laying down a lot less, although its hard to predict when I'll get tired. I've been outpatient now for two weeks, although it feels like its been a much longer time. How I feel today when compared to last week and a week ago is a lot better.
I had my second clinic visit this week, and the good news is that I felt both of those visits were kind of pointless. I had nothing negative to report to the doctors about my health or how I feel, and the doctors haven't had any significant news to share with me as well. The hopes for a boring process, seem to be coming true right now.
The one issue I have talked with my doctors about is removing the Hickman line that I've used to receive transfusions and get blood drawn from. The area around the sight is a little bit red, and there is a bit of a crusty discharge near the site as well. The doctors don't seem overly concerned about it, since I haven't had sign of a fever, it hasn't visually gotten worse, and it isn't sensitive to the touch. However, one doctor in particular seems eager to take it out since I haven't had to receive many IV transfusions since I've been discharged. I don't mind getting stuck with needles, so I think it would be a smart decision to have it removed soon and avoid the chance of infection. This will probably be something I'll try to arrange next week when I return to NIH.
There isn't much else going on with me right now. My next PET scan will occur sometime in the middle of February, and I won't have a bone marrow biopsy again until day +100. Hopefully things continue to be boring, and I continue to feel great.
Last week I received a blood tranfusion because my hemoglobin level had dropped, and since then I've had a lot more energy. I find myself napping and laying down a lot less, although its hard to predict when I'll get tired. I've been outpatient now for two weeks, although it feels like its been a much longer time. How I feel today when compared to last week and a week ago is a lot better.
I had my second clinic visit this week, and the good news is that I felt both of those visits were kind of pointless. I had nothing negative to report to the doctors about my health or how I feel, and the doctors haven't had any significant news to share with me as well. The hopes for a boring process, seem to be coming true right now.
The one issue I have talked with my doctors about is removing the Hickman line that I've used to receive transfusions and get blood drawn from. The area around the sight is a little bit red, and there is a bit of a crusty discharge near the site as well. The doctors don't seem overly concerned about it, since I haven't had sign of a fever, it hasn't visually gotten worse, and it isn't sensitive to the touch. However, one doctor in particular seems eager to take it out since I haven't had to receive many IV transfusions since I've been discharged. I don't mind getting stuck with needles, so I think it would be a smart decision to have it removed soon and avoid the chance of infection. This will probably be something I'll try to arrange next week when I return to NIH.
There isn't much else going on with me right now. My next PET scan will occur sometime in the middle of February, and I won't have a bone marrow biopsy again until day +100. Hopefully things continue to be boring, and I continue to feel great.
Friday, January 16, 2009
Day +30
The big event yesterday was my PET scan, and there is excellent news to report from that. My doctor was able to tell us yesterday that the PET showed that half of the lesions that were present in December are no longer visible on the PET scan. With the lesions that do remain, their intensity on the PET went from a range of 10-20, but were down to no more than 6 yesterday. So while I haven't achieved complete remission of my cancer, there was significant reduction in cancer activity. That is especially great news considering the PET scan in December was showing a slight uptake in disease.
The decrease in tumor cells means that no changes in my treatment plan are needed right now. I can continue like I was before with my recovery from the bone marrow transplant, and just focus on staying healthy. Another PET scan will be done in about a month to continue montitoring the disease.
In addition to the PET scan, I got a good report from my doctor during my weekly checkup. There aren't any other problems going on now, and the whole transplant team appears to be very positive about my response. The doctor shared that the results of my chimerism test from day +14 showed that 97% of my lymph cells were donor cells. He said that was an excellent result for so early. I had blood drawn on Wednesday to test for chimerism again, so hopefully those results will be even better by now. I also had a bone marrow biopsy on Wednesday, and they will check what percentage of my marrow is from the donor as well. Those results will probably be available in a week.
So as things stand today, everything is excellent. The disease made a turn in the right direction, and I am physically feeling great as well. On now to a likely boring weekend, and continued progress towards good health.
The decrease in tumor cells means that no changes in my treatment plan are needed right now. I can continue like I was before with my recovery from the bone marrow transplant, and just focus on staying healthy. Another PET scan will be done in about a month to continue montitoring the disease.
In addition to the PET scan, I got a good report from my doctor during my weekly checkup. There aren't any other problems going on now, and the whole transplant team appears to be very positive about my response. The doctor shared that the results of my chimerism test from day +14 showed that 97% of my lymph cells were donor cells. He said that was an excellent result for so early. I had blood drawn on Wednesday to test for chimerism again, so hopefully those results will be even better by now. I also had a bone marrow biopsy on Wednesday, and they will check what percentage of my marrow is from the donor as well. Those results will probably be available in a week.
So as things stand today, everything is excellent. The disease made a turn in the right direction, and I am physically feeling great as well. On now to a likely boring weekend, and continued progress towards good health.
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.
Wednesday, January 7, 2009
Day +21
Well...I'm finally at home typing this as Isaiah finally falls asleep. I think he was even more excited than I was that I came home, and he resisted going to bed for several hours. It feels very good to be home! There is comfort here that isn't available in the hospital. Part of being home though is that it makes me want to act like I'm healthy again. Although I've done extremely well following my transplant, I still get exhausted easily and my bladder hasn't recovered enough that I can avoid the bathroom for too long of a time.
Before I was discharged today I received my schedule for my outpatient visits. Every week I will be heading back to NIH at least every Monday and Thursday...starting tommorow. So Kate, Isaiah, and I will have to get up early in the morning, take Isaiah to school as early as possible, and then head over to NIH for my clinic appointment. They want me to be there around 7:30, or as close to that as possible. That way they can get my blood drawn and have the lab work done quickly in case there are any changes or procedures they want done based on the results. If all goes well, we should see the transplant team in the morning and be out of NIH by noon. If there are other tests they want done, any of those outpatient visits could become a long day. It seems like a hassle to have to visit the hospital twice a week and battle morning rush hour on 495. However, twice a week really won't be all that bad considering the fact that I am not still in the hospital, and I get to spend the time in between at home.
Thanks to everybody for all of the prayers and support. Today was a big milestone, but there is still a long way to go before life is back to normal again.
Before I was discharged today I received my schedule for my outpatient visits. Every week I will be heading back to NIH at least every Monday and Thursday...starting tommorow. So Kate, Isaiah, and I will have to get up early in the morning, take Isaiah to school as early as possible, and then head over to NIH for my clinic appointment. They want me to be there around 7:30, or as close to that as possible. That way they can get my blood drawn and have the lab work done quickly in case there are any changes or procedures they want done based on the results. If all goes well, we should see the transplant team in the morning and be out of NIH by noon. If there are other tests they want done, any of those outpatient visits could become a long day. It seems like a hassle to have to visit the hospital twice a week and battle morning rush hour on 495. However, twice a week really won't be all that bad considering the fact that I am not still in the hospital, and I get to spend the time in between at home.
Thanks to everybody for all of the prayers and support. Today was a big milestone, but there is still a long way to go before life is back to normal again.
Tuesday, January 6, 2009
Day +20
I just can't seem to get out of this hospital. Tonight will be my 29th night at NIH, and I am pretty certain it will be my last night. I was told this morning that I might have been discharged this afternoon if the tests run on my stool sample were looking good. Well the results were negative for anything important, but I guess the doctors had decided earlier that Wednesday and not Tuesday afternoon would be my discharge. Would have been nice if they told me that when it was decided. So with my parents in the room I let out a little bit of frustration. I was told a week ago that last Friday would be my discharge day, only to have it pushed back to Monday, have me think it was today, and now Wednesday. I was all set to go this evening, but I guess another 24 hours isn't that long in the grand scheme of life.
Since my parents were here to take me home and I was staying, they did manage to take me out to dinner. We were in a nice Italian restaurant without much of a crowd, which is important for where I'm at physically right now. The food was definitely the best I've had since I've been in the hospital, but I quickly became exhausted. I had a hard time keeping my head off of the table by the time the entree arrived, and all I wanted to do was lie down. I was in tears for a minute or two just because of how exhausted I was. I felt great when we left the hospital and entered the restaurant, but my energy just disappeared so quickly. I'll take that experience as a sign that I'm not ready to be out in public that much. Having a bed nearby where I can crash at any time is going to be important.
Well tommorow Kate should be over here at NIH so we can get a bit more information about taking care of things while we are at home, and then we should be on our way. Dealing with cancer isn't easy, and there are always surprises. After all of these surprises with my discharge, I am praying for an uneventful day tommorow and a chance for some uninterrupted sleep in my own bed.
Since my parents were here to take me home and I was staying, they did manage to take me out to dinner. We were in a nice Italian restaurant without much of a crowd, which is important for where I'm at physically right now. The food was definitely the best I've had since I've been in the hospital, but I quickly became exhausted. I had a hard time keeping my head off of the table by the time the entree arrived, and all I wanted to do was lie down. I was in tears for a minute or two just because of how exhausted I was. I felt great when we left the hospital and entered the restaurant, but my energy just disappeared so quickly. I'll take that experience as a sign that I'm not ready to be out in public that much. Having a bed nearby where I can crash at any time is going to be important.
Well tommorow Kate should be over here at NIH so we can get a bit more information about taking care of things while we are at home, and then we should be on our way. Dealing with cancer isn't easy, and there are always surprises. After all of these surprises with my discharge, I am praying for an uneventful day tommorow and a chance for some uninterrupted sleep in my own bed.
Monday, January 5, 2009
Day +19
Bummer! I suppose everybody who has been keeping up with my updates is expecting me to write about how good it feels to be home today. Unfortunately the planned discharge for today did not happen like expected.
On Sunday I had another day pass and got to spend some good time with family, including Mary, Mya, and Reed before they head back to Florida. I was feeling pretty good most of the day, but unfortunately had some diarhea. When I got back to the hospital last night, I had some more diarhea throughout the night. So because of that issue, the transplant team wanted to keep me for at least another 24 hours to monitor the situation and make sure I don't have an infection or some other problem. It stinks to anticipate a return home and then have it taken away, but its better to be safe when dealing with my health.
One of the things that I learned over the weekend is that I'm not expected to drive while I am on the tacrolimus. That stinks. So when I do get home, I won't be able to be as independent as I thought I would. Kate will have to play the role of driver as well as wife and mother. Unfortunately Kate doesn't enjoy driving like I do, so that will be another of those nuisances that we have to deal with during this situation.
My blood results from today were excellent. My white blood cells were 7.87 and my absolute neutrophil count was 5.588. Those numbers are more than doule what they were two days ago, and are actually towards the high side of the healthy range. So my new immune system seems to have come in strong. I believe I will no longer have to take the neupogen shots, which stimulate cell growth in the bone marrow. Thats another step in the right direction.
Right now I am feeling extremely positive about my health. I feel like I have dealt with the bone marrow transplant about as well as I could, and am thankful for that. The only question I have in my mind right now is whether or not the cancer is still present. Since I am feeling so well, I take that as a sign that the new bone marrow cells and the high level doses of cytoxan and fludarabine might have wiped out the remaining cancer. However, I have felt confident before about being in remission and been let down. So I will keep on praying for my complete healing and giving thanks for how healthy I feel so far. After today's disappointment, I'm not planning on necessarily being home tommorow, but hopefully my next update will come from home rather than a hospital room at NIH.
On Sunday I had another day pass and got to spend some good time with family, including Mary, Mya, and Reed before they head back to Florida. I was feeling pretty good most of the day, but unfortunately had some diarhea. When I got back to the hospital last night, I had some more diarhea throughout the night. So because of that issue, the transplant team wanted to keep me for at least another 24 hours to monitor the situation and make sure I don't have an infection or some other problem. It stinks to anticipate a return home and then have it taken away, but its better to be safe when dealing with my health.
One of the things that I learned over the weekend is that I'm not expected to drive while I am on the tacrolimus. That stinks. So when I do get home, I won't be able to be as independent as I thought I would. Kate will have to play the role of driver as well as wife and mother. Unfortunately Kate doesn't enjoy driving like I do, so that will be another of those nuisances that we have to deal with during this situation.
My blood results from today were excellent. My white blood cells were 7.87 and my absolute neutrophil count was 5.588. Those numbers are more than doule what they were two days ago, and are actually towards the high side of the healthy range. So my new immune system seems to have come in strong. I believe I will no longer have to take the neupogen shots, which stimulate cell growth in the bone marrow. Thats another step in the right direction.
Right now I am feeling extremely positive about my health. I feel like I have dealt with the bone marrow transplant about as well as I could, and am thankful for that. The only question I have in my mind right now is whether or not the cancer is still present. Since I am feeling so well, I take that as a sign that the new bone marrow cells and the high level doses of cytoxan and fludarabine might have wiped out the remaining cancer. However, I have felt confident before about being in remission and been let down. So I will keep on praying for my complete healing and giving thanks for how healthy I feel so far. After today's disappointment, I'm not planning on necessarily being home tommorow, but hopefully my next update will come from home rather than a hospital room at NIH.
Sunday, January 4, 2009
Day +17
Today was a good day. I got to spend the afternoon at home with Kate and Isaiah. After 25 nights in the hospital, it was a bit strange to head back into our house. I know its not a big house, but it seemed really small when I first went in. Isaiah was really excited to have his daddy back, and it was a great visit. It will be nice to have another visit home tommorow, and to finally be discharged on Monday.
So when I got back from my visit home, I asked my nurse for the results from my morning blood tests. I was pleasantly shocked when I took a look at the numbers. My white blood cells came in at 2.970, after registering 1.740 the morning before. My absolute neutrophil count also rose dramatically from 1.235 to 2.198. The white blood cell count is still a bit low, but the neutrophil count is within the normal range.
My other numbers from the blood results increased as well. My red blood cells went from 2.92 to 3.11, hemoglobin went from 9.2 to 9.3, and my platelets went from 13 to 19. All of those results are still low, but its a good sign that they are coming up on their own without having to receive tranfusions. These recent results are really making me feel good as I get ready to head home from the hospital.
So when I got back from my visit home, I asked my nurse for the results from my morning blood tests. I was pleasantly shocked when I took a look at the numbers. My white blood cells came in at 2.970, after registering 1.740 the morning before. My absolute neutrophil count also rose dramatically from 1.235 to 2.198. The white blood cell count is still a bit low, but the neutrophil count is within the normal range.
My other numbers from the blood results increased as well. My red blood cells went from 2.92 to 3.11, hemoglobin went from 9.2 to 9.3, and my platelets went from 13 to 19. All of those results are still low, but its a good sign that they are coming up on their own without having to receive tranfusions. These recent results are really making me feel good as I get ready to head home from the hospital.
Saturday, January 3, 2009
Day +16
Got some good news today. The doctors are still happy with my progress and there are no new concerns. My white blood cells were up to 1.880, and my neutrophil count is 1.235. There is steady progress there, but my platelets are still low, 13 as of this afternoon.
So this morning the attending doctor said that Monday will be my planned discharge date! In addition to that good news, they plan on giving me a day pass to leave the hospital tommorow and Sunday. So at some point tommorow I should be able to head home and spend time with Kate and Isaiah at home. It will be strange to leave the hospital after almost a month here, but I am extremely excited for it. There is still a lot of things I need to follow up on once I leave the hospital, but it will be so much more comfortable to be treated as an outpatient and to be able to spend more time with my family.
Although I am still in the hospital tonight, I feel somewhat free. I have been receiving tacrolimus through an IV since Day -2, and they finally removed that IV for good this afternoon. So I am not currently hooked up to any IVs, and don't have any plans to unless I need a transfusion. I will continue to receive the tacrolimus orally for the next 100 days, but my dose level is so low that they do not have a pill small enough for me. So the pharmacist had to make an elixir with the small amount of tacrolimus that I'll be receiving, and I will be taking that orally twice a day. Things are really starting to look up today. The hospital stay will soon be over, and the next stage in this journey will pick up.
So this morning the attending doctor said that Monday will be my planned discharge date! In addition to that good news, they plan on giving me a day pass to leave the hospital tommorow and Sunday. So at some point tommorow I should be able to head home and spend time with Kate and Isaiah at home. It will be strange to leave the hospital after almost a month here, but I am extremely excited for it. There is still a lot of things I need to follow up on once I leave the hospital, but it will be so much more comfortable to be treated as an outpatient and to be able to spend more time with my family.
Although I am still in the hospital tonight, I feel somewhat free. I have been receiving tacrolimus through an IV since Day -2, and they finally removed that IV for good this afternoon. So I am not currently hooked up to any IVs, and don't have any plans to unless I need a transfusion. I will continue to receive the tacrolimus orally for the next 100 days, but my dose level is so low that they do not have a pill small enough for me. So the pharmacist had to make an elixir with the small amount of tacrolimus that I'll be receiving, and I will be taking that orally twice a day. Things are really starting to look up today. The hospital stay will soon be over, and the next stage in this journey will pick up.
Thursday, January 1, 2009
Day +15
Another day at the hospital and another day without much to report. My white blood cell counts are pretty much holding steady. They seem to be improving slightly each day, but the progress isn't quick like it was a week ago. The doctors remain positive about my progress, and there aren't any new issues coming up.
I had a new nurse today and she came in at one point and said, "I heard that you were going home tommorow." I explained that I had heard that too at one point, but that the doctor had told me there was no set date for discharge. Later she came in and told me one of the research nurses, who don't usually spend time on the ward, called and asked if I was being released tommorow. So this rumor of being sent home is making its way around the hospital, but I just haven't gotten any confirmation of this from any doctor.
Thats all I have for an update. There really isn't much going on. I'm feeling pretty decent, but tired for most of the day. If I don't get the ok to head home tommorow, hopefully I'll at least get a date to look forward to.
I had a new nurse today and she came in at one point and said, "I heard that you were going home tommorow." I explained that I had heard that too at one point, but that the doctor had told me there was no set date for discharge. Later she came in and told me one of the research nurses, who don't usually spend time on the ward, called and asked if I was being released tommorow. So this rumor of being sent home is making its way around the hospital, but I just haven't gotten any confirmation of this from any doctor.
Thats all I have for an update. There really isn't much going on. I'm feeling pretty decent, but tired for most of the day. If I don't get the ok to head home tommorow, hopefully I'll at least get a date to look forward to.
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