Chris' fatigue shows no sign of letting up. He slept for 11 hours last night. He had a one hour nap after being awake for half hour. When we got home from the hospital he had a nap until dinner. He then had a nap after dinner, woke up and watched an hour of TV and has now gone to bed again. He has asked me to wake him to ring in the New Year, but I am not sure if he will be able to make it.
But even though our NYE was not what we had planned, we keep assuring ourselves that this procedure means that this next year will continue to get better and better. It is pretty obvious what our joint New Year's Resolution is this year. We want to take advantage of this second chance. Chris gets a second immune system. We now get a chance to do all of the things that we might not have had the opportunity to do. 2011 is going to be a pretty exciting year.
His counts were down a bit today:
WBC: 2.3
Platelets: 16
Hemoglobin: 107
Neutrophils (from yesterday): 1.19
Tonight's blog will be short since I don't have Chris here to help me. But tomorrow since we have our first rest day in weeks we thought we would do our own year in review. We will give you our take on this procedure now that we have a little bit of distance from the whole thing.
Friday, December 31, 2010
Thursday, December 30, 2010
Day +17 (post-transplant)
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| Chris is pretty proud that he still didn't lose all of his hair. You can still see it faintly in this photo. |
Today's trip to the hosptial was a little eventful. While Chris has had really no nausea during or after the transplant, he seems to have developed this new symptom later on. He got sick on Monday and Wednesday after breakfast, but he thought this was triggered by brushing his teeth too vigourously. However, today Chris got violently sick on the way to the hospital. We had to pull over on the side of the road and put on a little bit of a show for people waiting for the bus. When we arrived at the hospital they gave him an IV anti-nausea. He was still sick a second time after he had drank some orange juice to take his pills. They tried a second anti-nausea and it seemed to do the trick.
Now it is very common for transplant and chemo patients to have nausea during or shortly after chemo, but it is a little strange to get nausea for the first time nearly three weeks from his last dose of chemo. But Chris likes to do things differently. He is starting to take an anti-nausea pill a half hour before any of his meals and we now travel with a plastic bag.
We also received some good news today. Chris will go in for antibiotics again tomorrow. He will then get a day off on New Year's Day and then will go back for one more day. If he seems to be doing well, he will be transfered to the clinic where he will start visiting twice a week, then once a week and finally only once a month. Since Chris can't stand going to the hospital now, he was extremely happy to find out that we would get to be going to the hospital less.
His counts today did not show much change:
WBC: 2.9
Platelets: 19
Hemoglobin: 116
They did not have his neutrophil count in yet, but I get the feeling that now that he is above 0.5, they don't seem to be that concerned about this count anymore.
One of his doctors examined him and it looks like his abscess is healing well. They are still not sure if Chris will need to have surgery down the road, but they are hoping now that Chris' white blood cells are kicking in that he will be able to fix himself. He is still in a lot of pain and is on a lot of pain killers. It is definitely more manageable now though and they seemed to have found a good balance for Chris.
We are now getting ready for New Year's Eve tomorrow night. We received some gifts from friends full of party hats, champagne and decorations. Chris has not been allowed to drink any alcohol yet, but we are going to ask his doctors for special permission tomorrow. We have had a pretty interesting year and it would be nice to toast to a new year that didn't include MS.
Wednesday, December 29, 2010
Day +16 (post-transplant)
When we visited the hospital today it was the first time we had seen some of Chris' doctors since they left to go on Christmas break. Everyone was commenting on how much of a difference that time had made.
Chris is still really tired. He has several two hour naps a day. And when he is awake he still feels tired. He also has a really hard time concentrating on things. It makes sense though since growing a new immune system takes a lot of energy.
One of the things that we were trying to concentrate on today was insurance. Now we have been extremely fortunate compared to other people. We have read about people spending thousands of dollars to get this procedure done. Luckily for Chris, this procedure is free and all the drugs are covered. Our only expenses came from parking fees and cafeteria visits for me. Chris was even covered for short term and long term disability, so we didn't need to worry about losing his income.
However, while Chris was in the hospital we received a letter saying that as of December 26, he would no longer be finished his disability leave. There was no explanation as to why it was happening. Of course we didn't read this letter until we got home from the hospital on December 26, and then the next two days were holidays. We called today and Chris' case worker was not in the office and no one at the call centre knew why all of sudden we had to resubmit a ton of forms to apply for disability coverage again. Chris' doctors have already started filling out the forms and are explaining that Chris could be out for another 6 months, but it means that until the forms are submitted and evaluated we are back to hating insurance companies.
Other than being tired and hating insurance companies, Chris is still doing well.
His counts for today are:
WBC: 3
Platelets: 26
Hemoglobin: 116
Neutrophils: 2.6
Chris is still really tired. He has several two hour naps a day. And when he is awake he still feels tired. He also has a really hard time concentrating on things. It makes sense though since growing a new immune system takes a lot of energy.
One of the things that we were trying to concentrate on today was insurance. Now we have been extremely fortunate compared to other people. We have read about people spending thousands of dollars to get this procedure done. Luckily for Chris, this procedure is free and all the drugs are covered. Our only expenses came from parking fees and cafeteria visits for me. Chris was even covered for short term and long term disability, so we didn't need to worry about losing his income.
However, while Chris was in the hospital we received a letter saying that as of December 26, he would no longer be finished his disability leave. There was no explanation as to why it was happening. Of course we didn't read this letter until we got home from the hospital on December 26, and then the next two days were holidays. We called today and Chris' case worker was not in the office and no one at the call centre knew why all of sudden we had to resubmit a ton of forms to apply for disability coverage again. Chris' doctors have already started filling out the forms and are explaining that Chris could be out for another 6 months, but it means that until the forms are submitted and evaluated we are back to hating insurance companies.
Other than being tired and hating insurance companies, Chris is still doing well.
His counts for today are:
WBC: 3
Platelets: 26
Hemoglobin: 116
Neutrophils: 2.6
Tuesday, December 28, 2010
Day +15 (post-transplant)
Today we arrived at the hospital ay 8:00 am and left the hospital at 9:30 am. It seemed to be first day that Chris had no issues. He came in, had antibiotics and since he was doing so well, he didn't even need to see a doctor.
His counts were down again today, but they reassured us that they are still in a "safe range."
WBC: 2.7
Platelets: 38
Hemoglobin: 96
Neutrophils : 2.2 (from yesterday)
Other than his pain and fatigue, Chris is feeling pretty good. He is already asking when we can stop going to the hospital every day. He is definitely sick of the hospital. He won't even watch any TV shows about hospitals anymore.
However, since we had the rest of the day away from the hospital, Chris got to have his first visitor today! He tried his hardest to stay awake the whole time, but he is still having a hard time staying awake for long periods. We were a little nervous about him having people visit him at the house, especially with his counts going down these last few days. But having someone come by made both of us feel a lot better and as long as we are careful, it is really worth taking a little bit of a risk.
His counts were down again today, but they reassured us that they are still in a "safe range."
WBC: 2.7
Platelets: 38
Hemoglobin: 96
Neutrophils : 2.2 (from yesterday)
Other than his pain and fatigue, Chris is feeling pretty good. He is already asking when we can stop going to the hospital every day. He is definitely sick of the hospital. He won't even watch any TV shows about hospitals anymore.
However, since we had the rest of the day away from the hospital, Chris got to have his first visitor today! He tried his hardest to stay awake the whole time, but he is still having a hard time staying awake for long periods. We were a little nervous about him having people visit him at the house, especially with his counts going down these last few days. But having someone come by made both of us feel a lot better and as long as we are careful, it is really worth taking a little bit of a risk.
Monday, December 27, 2010
Day +14 (post-transplant)
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| One of the only pictures I took while we were in the hospital. Chris' arms and stomach were covered in these bruises just from small needles (but don't worry, they didn't hurt) and he broke out in extremely uncomfortable rashes under his arms and other ones on his back, stomach and legs. |
Today was Chris' first day as an outpatient again and we were definitely nervous showing up for this appointment this morning. We were just waiting for them to tell us that Chris would need to be admitted again.
And when we got there it almost happened.
While Chris was doing well, a doctor from the infectious disease team had recommended Chris be on antibiotic that requires an intravenous injection every six hours. To administer this drug, Chris would need to stay in the hospital.
Luckily for Chris, after one of his own doctors spoke to him, he decided that Chris will try taking a different combination of antibiotics that only require one intravenous injection per day. As long as Chris responds well to this treatment, he can remain an outpatient. We both sighed with relief when we heard this.
In addition to receiving antibiotics, Chris had his blood and urine tested this morning.
His counts were:
WBC: 3.7
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| The other random photo I took of Chris getting his first blood transfusion. |
It is normal in the first few weeks to have your counts move around a lot, and then will start to stabilize. We were also expecting his counts to go down a bit since he is nolonger getting neupogen that boosts stem cell growth.
Platelets: 48
Hemoglobin: 112 (it was 106 yesterday)
By the time we left today, they did not have his neutrophil count, so we will probably always be a day behind with this information.
Sunday, December 26, 2010
Day +13 (post-transplant)
We received a late Christmas gift today, but it was worth the wait. Chris got to leave the hospital today and will become an outpatient again as of tomorrow.
This morning we received Chris' counts:
WBC: 4.3
Platelets: 30
Hemoglobin: over 100 (can't remember exactly)
Neutrophils: We left before they gave them to us.
Since his counts were doing so well and he was able to go 24 hours on oral pain medications, they let Chris go home today at about 1:30 pm. He now is taking hydromorphone every 4 hours, but his arms are relieved to not have as many injections. I took some photos of the bruises on Chris' arms (they are pretty impressive) and we will try and post them later on. However, Chris still needs to take anti-anxiety medication because of the bad side effects he gets from taking so many pain killers.
In addition to hydromorphone, Chris is still taking Ursodial to protect his liver, an antiviral, Pantoloc to prevent and treat any stomach ulcers and reflux and two different antibiotics.
We are due back at the hospital at 8:30 am, but it means tonight we get to sleep in our own bed.
This morning we received Chris' counts:
WBC: 4.3
Platelets: 30
Hemoglobin: over 100 (can't remember exactly)
Neutrophils: We left before they gave them to us.
Since his counts were doing so well and he was able to go 24 hours on oral pain medications, they let Chris go home today at about 1:30 pm. He now is taking hydromorphone every 4 hours, but his arms are relieved to not have as many injections. I took some photos of the bruises on Chris' arms (they are pretty impressive) and we will try and post them later on. However, Chris still needs to take anti-anxiety medication because of the bad side effects he gets from taking so many pain killers.
In addition to hydromorphone, Chris is still taking Ursodial to protect his liver, an antiviral, Pantoloc to prevent and treat any stomach ulcers and reflux and two different antibiotics.
We are due back at the hospital at 8:30 am, but it means tonight we get to sleep in our own bed.
Saturday, December 25, 2010
Day +12 (post-transplant)
Merry Christmas Everyone!
Tonight's post will be short.
Despite having low platelets (less than 10) and low hemoglobin (76), Chris' counts are looking great.
His white blood cell count was 1.7 and his neutrophil count was 1.5. And since he was able to get a blood transfusion and a platelet transfusion today, he is really feeling a lot better.
Chris was able to do 10 laps (approx 1 km) today without a rest and he had so much more energy. Still no signs of a fever either!
His nurse today even commented that his blood counts are high enough for him to go home. We just need to get his pain under control. Chris switched to taking his pain killers orally instead of by injection, and so far so good!
We are hoping to be able to talk to his doctors tomorrow about starting the transition to become an outpatient again. One thing we have learned here is that it is really easy for doctors to decide to make you an inpatient, but really hard for doctors to agree to let you be an outpatient.
Tonight's post will be short.
Despite having low platelets (less than 10) and low hemoglobin (76), Chris' counts are looking great.
His white blood cell count was 1.7 and his neutrophil count was 1.5. And since he was able to get a blood transfusion and a platelet transfusion today, he is really feeling a lot better.
Chris was able to do 10 laps (approx 1 km) today without a rest and he had so much more energy. Still no signs of a fever either!
His nurse today even commented that his blood counts are high enough for him to go home. We just need to get his pain under control. Chris switched to taking his pain killers orally instead of by injection, and so far so good!
We are hoping to be able to talk to his doctors tomorrow about starting the transition to become an outpatient again. One thing we have learned here is that it is really easy for doctors to decide to make you an inpatient, but really hard for doctors to agree to let you be an outpatient.
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