Day +89 (D 229)
WBC 7.2 K/uL (4.0 -11.0)
RBC 3.26 K/uL (4.0 - 5.5)
HGB 10.9 G/DL (12.0 -16.0)
PLT 289 K/uL (140 - 440)
ANC 4.48 K/uL (1.7 - 7.3)
Today's counts are a bit down from the last set of test results we got. I have been assured that this is nothing to be worried about as the production of the various blood cell types in the human body is not a "steady state process". Ahh but how much easier everything would be if it was.
On the positive side we are now officially independent of all transfusions. Ann's magnesium level was at 2.0 mg/DL, Which is well into the normal range of 1.8 to 2.9. So the transplant team has discontinued all the IV meds and we need to return the gemstar portable pump. I guess 9 pills a day finally did the trick.
I have to be honest, I am really nervous about this coming Thursday. Ann is scheduled for a bone marrow biopsy and every time she does one I feel like I'm riding a roller coaster at the top of it's crest. You get that awful anticipation of feeling your stomach's relative velocity reach zero.
We have met several people, who had progressed to almost +100 days and suddenly they get a back test result that reverses their entire world. It is very scary even thinking about it. So to pass the time we have been spending time watching all the comedy that we can. So far "King of Queens" and "30 Rock" are the stand out favorites.
Ann actually found a pearl of wisdom in an episode of 30 Rock the other day. To quote the Tracy Jordan character, "Live every day of your life like it's Shark Week"! I couldn't think of a more apropos statement if I tried.
Tuesday, August 28, 2007
Friday, August 24, 2007
Good Bye Dr. Alousi
Day +85 (D 225)
WBC 8.2 K/uL (4.0 -11.0)
RBC 3.40 M/uL (4.0 - 5.5)
HGB 11.5 G/DL (12.0 - 16.0)
PLT 323 K/uL (140 - 440)
Ann's counts are looking pretty good, no? White cells and Platelets continue to be in the normal range. While Red cells and Hemoglobin are almost at normal levels.
Today is a bit of a banner day as well because the transplant team elected to discontinue all the take home IV fluids we where using between clinic visits. The bags Ann was being given were saline and magnesium and the team is now reasonably comfortable that she can maintain the required level of it by herself by only taking pills. Ann is not happy about taking 4500 mg of magnesium a day, but it is preferable to having cold bags of fluid pumped in. It's also a reminder that MDA is beginning to consider the CVC port as extraneous. Hurray!
We said good bye to Dr. Alousi today. He is a very genuine and kind man and although we never did meet any of his other patients while we where under his care, it's hard to imagine them being in better hands. Dr. Kebriaei, who was our first transplant doctor had been out on maternity leave for the least couple of months and Dr. Alousi absorbed her cases. We are scheduled to see her again next week after Ann has her +90 day bone marrow biopsy.
I know we have been giving the impression that we will be leaving Houston on the +100 Day mark, or 9/7/07. Personally I would like to leave this place so fast that we will leave flaming skid marks, but everything is hanging on the results of the biopsy, chimerism and FISH tests. So we may hang around a few extra days just so we don't have to turn around and come back if anything is wrong.
Fingers crossed and 14 days to go...
WBC 8.2 K/uL (4.0 -11.0)
RBC 3.40 M/uL (4.0 - 5.5)
HGB 11.5 G/DL (12.0 - 16.0)
PLT 323 K/uL (140 - 440)
Ann's counts are looking pretty good, no? White cells and Platelets continue to be in the normal range. While Red cells and Hemoglobin are almost at normal levels.
Today is a bit of a banner day as well because the transplant team elected to discontinue all the take home IV fluids we where using between clinic visits. The bags Ann was being given were saline and magnesium and the team is now reasonably comfortable that she can maintain the required level of it by herself by only taking pills. Ann is not happy about taking 4500 mg of magnesium a day, but it is preferable to having cold bags of fluid pumped in. It's also a reminder that MDA is beginning to consider the CVC port as extraneous. Hurray!
We said good bye to Dr. Alousi today. He is a very genuine and kind man and although we never did meet any of his other patients while we where under his care, it's hard to imagine them being in better hands. Dr. Kebriaei, who was our first transplant doctor had been out on maternity leave for the least couple of months and Dr. Alousi absorbed her cases. We are scheduled to see her again next week after Ann has her +90 day bone marrow biopsy.
I know we have been giving the impression that we will be leaving Houston on the +100 Day mark, or 9/7/07. Personally I would like to leave this place so fast that we will leave flaming skid marks, but everything is hanging on the results of the biopsy, chimerism and FISH tests. So we may hang around a few extra days just so we don't have to turn around and come back if anything is wrong.
Fingers crossed and 14 days to go...
Thursday, August 23, 2007
Day +84 (Day 224)
We didn't have clinic today, so I don't have anything to report on the numbers front. I honestly don't know what to do with myself on days like today. I finished my latest knitting project the other day and I haven't decided what I want to pick up next. I have a bag full of yarn and an order of yarn on the way. The order is for a gift project I have planned. Ha, ha, Laren, it's going to happen.
We did get a little surprise today. Usually, we get my MDA schedule online, and we're so used to our routine, that we rarely check it. We usually just show up on my clinic days at our regular time. Whenever I have a special visit, I usually get a call to let me know. Today, we got my schedule in the mail. This isn't unusual. The surprise was that my last IV therapy visit is on Monday. That's it. There's nothing else scheduled for the rest of the week. I have a bone marrow aspiration and biopsy the following week and a follow up with my original transplant doctor the next day.
This is all a little ahead of schedule. What happens next, who knows?
We didn't have clinic today, so I don't have anything to report on the numbers front. I honestly don't know what to do with myself on days like today. I finished my latest knitting project the other day and I haven't decided what I want to pick up next. I have a bag full of yarn and an order of yarn on the way. The order is for a gift project I have planned. Ha, ha, Laren, it's going to happen.
We did get a little surprise today. Usually, we get my MDA schedule online, and we're so used to our routine, that we rarely check it. We usually just show up on my clinic days at our regular time. Whenever I have a special visit, I usually get a call to let me know. Today, we got my schedule in the mail. This isn't unusual. The surprise was that my last IV therapy visit is on Monday. That's it. There's nothing else scheduled for the rest of the week. I have a bone marrow aspiration and biopsy the following week and a follow up with my original transplant doctor the next day.
This is all a little ahead of schedule. What happens next, who knows?
Tuesday, August 21, 2007
Day 82 (Day 222)
WBC: 7.1 K/uL
Platelets: 307 K/uL
RBC: 3.29 K/uL
Hemoglobin: 11.1 g/DL
ANC: 4.71 K/uL
As you all can see, my hemoglobin and red blood cells are coming up. This is the first time my hemoglobin has been over 11 g/DL since I've been diagnosed. Now, if my pattern holds true, something will cause my hemoglobin and red blood cells to fall. Maybe this is the week I break the pattern.
Chris is really starting to feel anxious about us leaving MDA. Tentatively, we'll be given the green light in 18 days. We talked to my APN today about what would happen afterwards. It seems that I'll have to have blood work every week and she suggested having it done in BR to save the weekly drive to Houston. Chris mentioned that we wouldn't mind the drive and she asked us to consider it. I would have to come into Houston at least once every three months to follow up with my transplant doctor. This is if my numbers continue to remain stable. There are so many contingencies.
The physical therapists are starting to really increase my workouts. Today was interesting in that they conceived of new exercises to torture my lower body since I've been blowing through workouts. I felt like my arms and legs were spaghetti afterwards. I actually started getting a charlie horse at the end of the workout. I can't wait to see what they have for me on Friday.
I find that the closer that I get to 100 days, the more anxious I am to leave. I spoke to another transplant patient today who was a few days behind me and she felt the same way. You start out thinking that the 100 days will never be up and then it falls upon you. I'm ready to pack boxes and load up the truck just so we can drive off from my last appointment. I know that's not very practical just now, but it's how I feel.
There are still so many things to consider. I've been looking at house plans and developments in BR and Denham Springs. In addition to that, Chris needs to find a job with benefits. So, in a shameless plug for my hubby, he's a fabulous mechanical engineer with experience in construction scheduling.
And with that, I can't think of anything else that happened today. No clinic visits tomorrow, but I'm sure that Chris will find something to write about. :)
WBC: 7.1 K/uL
Platelets: 307 K/uL
RBC: 3.29 K/uL
Hemoglobin: 11.1 g/DL
ANC: 4.71 K/uL
As you all can see, my hemoglobin and red blood cells are coming up. This is the first time my hemoglobin has been over 11 g/DL since I've been diagnosed. Now, if my pattern holds true, something will cause my hemoglobin and red blood cells to fall. Maybe this is the week I break the pattern.
Chris is really starting to feel anxious about us leaving MDA. Tentatively, we'll be given the green light in 18 days. We talked to my APN today about what would happen afterwards. It seems that I'll have to have blood work every week and she suggested having it done in BR to save the weekly drive to Houston. Chris mentioned that we wouldn't mind the drive and she asked us to consider it. I would have to come into Houston at least once every three months to follow up with my transplant doctor. This is if my numbers continue to remain stable. There are so many contingencies.
The physical therapists are starting to really increase my workouts. Today was interesting in that they conceived of new exercises to torture my lower body since I've been blowing through workouts. I felt like my arms and legs were spaghetti afterwards. I actually started getting a charlie horse at the end of the workout. I can't wait to see what they have for me on Friday.
I find that the closer that I get to 100 days, the more anxious I am to leave. I spoke to another transplant patient today who was a few days behind me and she felt the same way. You start out thinking that the 100 days will never be up and then it falls upon you. I'm ready to pack boxes and load up the truck just so we can drive off from my last appointment. I know that's not very practical just now, but it's how I feel.
There are still so many things to consider. I've been looking at house plans and developments in BR and Denham Springs. In addition to that, Chris needs to find a job with benefits. So, in a shameless plug for my hubby, he's a fabulous mechanical engineer with experience in construction scheduling.
And with that, I can't think of anything else that happened today. No clinic visits tomorrow, but I'm sure that Chris will find something to write about. :)
Monday, August 20, 2007
No more clinic on Mondays
Day +81 (D 221)
I guess today is something of a milestone because this was the first Monday in a very long time that Ann didn't have to go to clinic...
...Of course that also means it's the first Monday in a long time that she didn't have to have her vitals taken or blood tests done. Also no-one handed us test results which I could use to reassure myself that Ann is safe. So no blood counts today.
You guessed it, I haven't quit worrying yet and I'm not sure I ever will.
Still despite not having any clinic visit scheduled today Ann decided she still wanted to go to physical therapy. She says she really feels better after working out with the therapists, but I think she is just committed to getting better and getting out of here. The physical therapists feel the same way and they have started mixing up her exercises to include more walking and tread mill activities. They want Ann to be as mobile as possible before sending her back into the wild.
In other news, the PharmD has reduced Ann's take home magnesium IV infusion. It now runs a little over two hours and is a lot more manageable for Ann to carry around the apartment. I suppose this is all in preparation for the tag and release program. Nineteen days to go.
I guess today is something of a milestone because this was the first Monday in a very long time that Ann didn't have to go to clinic...
...Of course that also means it's the first Monday in a long time that she didn't have to have her vitals taken or blood tests done. Also no-one handed us test results which I could use to reassure myself that Ann is safe. So no blood counts today.
You guessed it, I haven't quit worrying yet and I'm not sure I ever will.
Still despite not having any clinic visit scheduled today Ann decided she still wanted to go to physical therapy. She says she really feels better after working out with the therapists, but I think she is just committed to getting better and getting out of here. The physical therapists feel the same way and they have started mixing up her exercises to include more walking and tread mill activities. They want Ann to be as mobile as possible before sending her back into the wild.
In other news, the PharmD has reduced Ann's take home magnesium IV infusion. It now runs a little over two hours and is a lot more manageable for Ann to carry around the apartment. I suppose this is all in preparation for the tag and release program. Nineteen days to go.
Saturday, August 18, 2007
Late Post
Day +79 (D 219)
Apologies for the late post. We filmed this last night but apparently Youtube had a problem with it's servers and I couldn't post it until now.
Apologies for the late post. We filmed this last night but apparently Youtube had a problem with it's servers and I couldn't post it until now.
Wednesday, August 15, 2007
Day +77 (D 217)
Thankfully, I can report that yesterday was uneventful. I didn't manage to run a fever and I was allowed to complete a full workout at physical therapy. All of the physical therapists joked with me about staying out of the hospital. Lucky for me, I did.
I have been driving lately, and Chris is pretty supportive of it. After 8 months it's strange to be behind the wheel again. For those of you who have been in a car with me in the past, you'd be surprised at the change. I'm going to guess that one of my cords came from a very impatient baby. I'm working on the patience bit, but the traffic here is unbearable. I'm happy to report that I can feel the soles of my feet and I'm pretty sure that I can feel my fingertips. I know that sounds strange, but after 8 months of not really being able to feel anything but pain it can be hard to tell.
I find that I'm becoming very impatient as day 100 approaches. I'm desperate for a new routine. It's just time to take my life back. Poor Chris is in knots about me relapsing. I don't know what I can do about it. I'm determined to live my life so that I can say that I enjoyed my second chance. I can't worry about a relapse.
Thankfully, I can report that yesterday was uneventful. I didn't manage to run a fever and I was allowed to complete a full workout at physical therapy. All of the physical therapists joked with me about staying out of the hospital. Lucky for me, I did.
I have been driving lately, and Chris is pretty supportive of it. After 8 months it's strange to be behind the wheel again. For those of you who have been in a car with me in the past, you'd be surprised at the change. I'm going to guess that one of my cords came from a very impatient baby. I'm working on the patience bit, but the traffic here is unbearable. I'm happy to report that I can feel the soles of my feet and I'm pretty sure that I can feel my fingertips. I know that sounds strange, but after 8 months of not really being able to feel anything but pain it can be hard to tell.
I find that I'm becoming very impatient as day 100 approaches. I'm desperate for a new routine. It's just time to take my life back. Poor Chris is in knots about me relapsing. I don't know what I can do about it. I'm determined to live my life so that I can say that I enjoyed my second chance. I can't worry about a relapse.
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