Morning, all. Today is day +15 and things are continuing to improve. Yesterday my ANC was about 1100, almost double from the day before. Yeah! But my hematocrit was down a bit more (23.5) so we decided to top off my tanks with 2 units of red blood. Each bag is about 90 minutes of infusion and I also got a bag of platelets (another 30 minutes). So it ended up being a pretty long day at the infusion center and hospital. We had an 11:00 am appt yesterday and didn't get home until about 7:45 pm.
The transfusion was uneventful and I almost immediately started feeling quite a bit more chipper. My entire body has been really working to keep things going with my reduced # of red blood cells so everything started feeling WAY better as I got the new blood. It's really amazing, cool and wonderful to think that someone donated these red blood cells that are helping me get better. So this is a big shout out to all of you that donate blood. As a recipient of both platelets and red blood cells I can say without exaggeration that these blood products have saved my life during this process. Without them my organs would probably start leaking (due to low platelets) and at some point I would have some serious cardio/pulmonary/cerebral event (due to low red blood cells). So I'm a very concrete example of the benefits that come from your blood donation. So thank you, thank you, thank you!
With my new red blood cell volume I had a really nice, relaxed sleep and got out for a walk this morning. We threw in a few 60 yard runs during the mile long walk. I haven't run in about 3-4 weeks so although I was immediately gassed it sure felt good to have enough energy to even run a little bit.
It's not clear if my bone marrow is healthy enough yet to keep up my red and platelet levels or if I'll need more transfusions as I recover. It appears that the priority of your bone marrow is to get your immune system healthy (through white blood cell production) and then work on generating reds and platelets. Platelets don't live very long (3-5 days) so if you're not making enough you can run low fairly quickly. So I may have more platelet and red blood cell transfusions down the line in the next couple of weeks.
Our appt is at 1:00 this afternoon so we won't know about blood counts until about 3:00 pm or so. If things continue to go up I'll probably be able to stop one of the antibiotic infusions today. That will make things easier logistically as we'll go from 5x/day infusions down to 2x/day.
Ok, that's the update from the salt mines. More news as it happens!
Tuesday, April 12, 2011
Sunday, April 10, 2011
Day 13 - ANC > 500, yeah!
Day +13 and counts continue to go up. My ANC this morning was 570, which is very cool. 500 is a bit of a milestone; if you're less than that # you're seriously at risk for getting some nasty infection so getting above 500 is a big milestone (yesterday I was at 270). Red blood cells and platelets have not yet started to climb but I've so far avoided a red blood cell transfusion. My crit this morning was 24.8 (normal for an adult male is 40-50) so I'm still feeling the effects of low crit but things continue to go in the right direction. We're hopeful that tomorrow we'll be able to stop doing the IV antibiotics. I'm getting 5 infusions a day for antibiotics - 1 in the clinic and 4 at home. It's a major PITA so it will be great to get that off our plate. Our first infusion starts at 5:30 in the morning and the last one finishes about 11-11:30 at night so it makes for a long day.
I'm also continuing to really dislike neupogen. It's helping my immune system reload so it's A Good Thing but it's giving me major sinus headaches. At times I feel like I have a hot poker sticking into my right eyebrow and other times it manifests itself as throbbing pain at the base of the back of my head, just above my neck. But these are all good pains, indicating that my immune system is rockin' and rollin'. So I'm trying to grin and bear it but I'm certainly ready to be done with this part of the journey.
Today we got out for a nice walk around old town Louisville and looked at some neat houses. There are a bunch of fun streets in Louisville where folks have upgraded little bungalows and it was fun to see what people have done with these properties.
One other fun and super geeky thing we did today was to play network scrabble against each other. We were at the infusion center, playing each other over the Internet. Another great way to waste time while I sit in the big chair and get dosed with fluids and antibiotics. Today was the 26th day in a row I've been down to the hospital or clinic so I'm really looking for the matter transporter to get me there but so far we've been stuck with more conventional means of transport.
Ok, that's it for now! I wouldn't say that we're out of the woods yet but I think we can see the edge of the forest from where we're standing. Another few days of clean living and we'll hopefully be over the top.
Thx for checking in! Hope you're having a good weekend, and remember that One Fun Thing a day is a good way to live life :)
I'm also continuing to really dislike neupogen. It's helping my immune system reload so it's A Good Thing but it's giving me major sinus headaches. At times I feel like I have a hot poker sticking into my right eyebrow and other times it manifests itself as throbbing pain at the base of the back of my head, just above my neck. But these are all good pains, indicating that my immune system is rockin' and rollin'. So I'm trying to grin and bear it but I'm certainly ready to be done with this part of the journey.
Today we got out for a nice walk around old town Louisville and looked at some neat houses. There are a bunch of fun streets in Louisville where folks have upgraded little bungalows and it was fun to see what people have done with these properties.
One other fun and super geeky thing we did today was to play network scrabble against each other. We were at the infusion center, playing each other over the Internet. Another great way to waste time while I sit in the big chair and get dosed with fluids and antibiotics. Today was the 26th day in a row I've been down to the hospital or clinic so I'm really looking for the matter transporter to get me there but so far we've been stuck with more conventional means of transport.
Ok, that's it for now! I wouldn't say that we're out of the woods yet but I think we can see the edge of the forest from where we're standing. Another few days of clean living and we'll hopefully be over the top.
Thx for checking in! Hope you're having a good weekend, and remember that One Fun Thing a day is a good way to live life :)
Friday, April 8, 2011
engraftment, baby!
Day +11 and I'm happy to report that my bone marrow is starting to produce new white blood cells. My ANC is now 0.1, WBCs are 0.4 and we're heading in a good direction. I got a platelet transfusion yesterday afternoon to keep me safe and may get a red blood transfusion over the weekend. But with an ANC > 0 and 2 days in a row of my total WBC count going up we can conclude that my bone marrow is back in business. I'm still not feeling like running any wind sprints since my RBC #s are all pretty low but this is definitely a major milestone. Now we're just hangin' in there, being healthy, waiting for my immune system to continue to wramp up. When my ANC > 1.0 for two days I'll be able to stop the antibiotics which will be a big step logistically, since I spend about 4 hrs/day getting infused with the antibiotics.
So it's a happy Friday at the infusion center. More news as it happens!
So it's a happy Friday at the infusion center. More news as it happens!
Thursday, April 7, 2011
counts are starting to creep up
Day +10 this morning and I just got back my lab results. My WBCs and RBCs are both starting to tick up a bit. Platelets are down and the real indicator of immune system health (ANC, which measures a type of infection fighting white blood cells) is still basically at zero. But the fact that some of the markers are edging up mean that I think we've reached the bottom and are now starting to climb up to a more normal blood chemistry. Yeah! The only bad part of today is that they're giving me a drug that stimulates white blood cell growth in your bone marrow (Neupogen) but it makes you feel like you have the flu. So although my temp is normal I feel a bit feverish, achy, etc. A very reasonable trade-off - grow white cells faster vs. a bit of physical discomfort - but it's still another straw on the back of the Geo medical camel.
Well, that's it for now. I'll finish getting my normal set of fluids and electrolytes and then pop across the street and get a platelet infusion to keep me safe from any sort of bleeding incident. You know, like blowing your nose and having half your blood volume come streaming down your chest. Or sneezing and having a similar reaction. Or coughing and trigger some crazy pulmonary/esophageal bleeding incident. You know, little things that yeah, you might be ok with for fun but to keep it boring you probably want to avoid :)
Well, that's it for now. I'll finish getting my normal set of fluids and electrolytes and then pop across the street and get a platelet infusion to keep me safe from any sort of bleeding incident. You know, like blowing your nose and having half your blood volume come streaming down your chest. Or sneezing and having a similar reaction. Or coughing and trigger some crazy pulmonary/esophageal bleeding incident. You know, little things that yeah, you might be ok with for fun but to keep it boring you probably want to avoid :)
Wednesday, April 6, 2011
Day +9 - Starting to feel more cheerful (by Susan)
Today both George and I are feeling more optimistic and cheerful than we have been. George's counts still have not gone up - they are pretty much in the basement. He escaped getting a transfusion of red blood cells by .5 today (his red cell count was 24.4 and he gets a transfusion if it goes below 24). So we had a relatively short day at the blood center. However, his stomach and mouth are starting to feel a little bit better. George actually ate a normal breakfast and lunch today, and while he didn't enjoy the food, at least he didn't feel like throwing up when he ate it, which is a lot better than he has been doing. The doctor told us today that it's possible his immune system is starting to come back, but it's working on his stomach and mouth first before going back into the bone marrow. The bottom line is that George is feeling the teeniest tiniest bit better, and that's reason to be cheerful.
The infusions are going well at home. I have turned from a quivering, anxious wreck into a calm and competent professional in just two days. I was able to get up at 5:30 this morning and get everything set up so George was getting his antibiotics by 6:00, no sweat. But I do have even more respect for the infusion nurses who do this job so calmly and cheerfully. They are real rock stars, in my opinion. We are getting to be friends with all of them.
They have a support group for transplant caregivers at Presby St. Luke's once a week - it is run by a staff psychologist and a young intern who's in psychology graduate school at D.U. I always feel better after going to this because it gives me a chance to see that everyone who gets transplants goes through probably the toughest time in their lives. It helps to feel less alone in this. You do hear about all kinds of crazy things happening from the support group - like the guy who got up and stepped on his infusion line and yanked it out of his chest and had blood spurting all over the place, people curled up in fetal balls because they are in so much pain, people who are so tired that they have to take a nap after taking a shower, and patients who will NOT follow their caregivers' instructions (that sounds familiar).
Listening to all of these stories makes me realize that George is doing really well through all this. He's been able to get out for one-mile walks just about every day, he is still working on his program for the Android, he still has enough energy to joke around with the nurses and tell me he loves me every day.
I told the Caregiver Support group about Josh's idea for "One Fun Thing" each day, and it really resonated. So, Josh, you have started a movement! All over the city we have people trying to find One Fun Thing to do. Today our One Fun Thing is that George is going to have virtual dinner with his biking boys by using the Face Time application on his new iPad, and Kyle is coming over so I can go to yoga class. It really helps to have something to look forward to.
The infusions are going well at home. I have turned from a quivering, anxious wreck into a calm and competent professional in just two days. I was able to get up at 5:30 this morning and get everything set up so George was getting his antibiotics by 6:00, no sweat. But I do have even more respect for the infusion nurses who do this job so calmly and cheerfully. They are real rock stars, in my opinion. We are getting to be friends with all of them.
They have a support group for transplant caregivers at Presby St. Luke's once a week - it is run by a staff psychologist and a young intern who's in psychology graduate school at D.U. I always feel better after going to this because it gives me a chance to see that everyone who gets transplants goes through probably the toughest time in their lives. It helps to feel less alone in this. You do hear about all kinds of crazy things happening from the support group - like the guy who got up and stepped on his infusion line and yanked it out of his chest and had blood spurting all over the place, people curled up in fetal balls because they are in so much pain, people who are so tired that they have to take a nap after taking a shower, and patients who will NOT follow their caregivers' instructions (that sounds familiar).
Listening to all of these stories makes me realize that George is doing really well through all this. He's been able to get out for one-mile walks just about every day, he is still working on his program for the Android, he still has enough energy to joke around with the nurses and tell me he loves me every day.
I told the Caregiver Support group about Josh's idea for "One Fun Thing" each day, and it really resonated. So, Josh, you have started a movement! All over the city we have people trying to find One Fun Thing to do. Today our One Fun Thing is that George is going to have virtual dinner with his biking boys by using the Face Time application on his new iPad, and Kyle is coming over so I can go to yoga class. It really helps to have something to look forward to.
Tuesday, April 5, 2011
Day 8 - when a pimple is big deal
Morning, all. Day +8 in our fun filled adventure in growing a new immune system. I'm definitely feeling better today - got a little more bounce in my step, temperature is down, etc. My counts are in general still going down so I haven't turned the corner yet but the antibiotic has reduced my fever and that's made me feel tons better.
So, to a discussion of the title of this post. This morning I noticed a little pimple on my leg. A little red welt that's probably 2 mm in diameter. Now, for all of you cool folks out there with a functional immune system, these kind of skin issues just come and go, no big deal. But when your ANC (a measure of your immune fighting white blood cells) is in the basement, these kinds of issues are not ok! What starts as a minor bacterial skirmish on a hair follicle in your leg can grow into some gross, nasty boil that can make you really sick. So the answer is another IV antibiotic that I'll take for the next few days. I'll get one dose in the infusion clinic and Susan will give me another dose at home. BTW, my mighty wing woman is becoming quite skilled in delivering IV antibiotic infusions. She's now an ace in setting up the drip line, bleeding air from the line, hooking things up in a sterile fashion, getting the drip rate correct, etc.
The next time you get a pimple and it goes away, score one for your mighty immune system. In another few days I should be able to man up and bitch slap any pimples that come my way, but until then, I'll be relying on modern medicine to keep my skin (and the rest of me) relatively healthy.
Yeah antibiotics! Yeah, life!
So, to a discussion of the title of this post. This morning I noticed a little pimple on my leg. A little red welt that's probably 2 mm in diameter. Now, for all of you cool folks out there with a functional immune system, these kind of skin issues just come and go, no big deal. But when your ANC (a measure of your immune fighting white blood cells) is in the basement, these kinds of issues are not ok! What starts as a minor bacterial skirmish on a hair follicle in your leg can grow into some gross, nasty boil that can make you really sick. So the answer is another IV antibiotic that I'll take for the next few days. I'll get one dose in the infusion clinic and Susan will give me another dose at home. BTW, my mighty wing woman is becoming quite skilled in delivering IV antibiotic infusions. She's now an ace in setting up the drip line, bleeding air from the line, hooking things up in a sterile fashion, getting the drip rate correct, etc.
The next time you get a pimple and it goes away, score one for your mighty immune system. In another few days I should be able to man up and bitch slap any pimples that come my way, but until then, I'll be relying on modern medicine to keep my skin (and the rest of me) relatively healthy.
Yeah antibiotics! Yeah, life!
Sunday, April 3, 2011
Day + Six - are we at the bottom yet? (by Susan)
We are now at day 6 after the stem cell transplant, and George is definitely at a low point. His counts have dropped very low - close to zero for platelets and white blood cells, although red blood cells aren't quite as bad. George woke up at 5:00 a.m. this morning with a fever of 100.6, and the doctors told us to call the blood center if it got above 100.5, because this could indicate infection. So, I called the blood center and the doctor on call told me just to give him some Tylenol and come in for our regular appointment at 8:00 a.m. On the weekends we have been going to the Presbyterian St. Luke's infusion center because the Blood Center is closed. When we told them what was going on, the nurse said, "OK - this is First Fever", as if it is a very common occurrence. She got him on an IV antibiotic (they actually administer it through his port) right away, and took some blood samples to be cultured to figure out if it is an infection or just what they call a "neutropenic fever". The doctor doing rounds today told us that each transplant is unique, and they have to be prepared for all kinds of crazy stuff happening. Since George has no capacity to fight infection right now, any bacteria circulating in his system, even from something as simple as brushing his teeth, could potentially cause a fever.
I guess fevers in transplant patients are pretty common, though, because before we even started this process they made us sign a contract with a home care company who delivered a box of antibiotics and tubes for us to keep ready at home. Today I was told that I would need to administer IV antibiotics to George three times a day at home. So, I learned how to mix the antibiotics, how to hang them from a pole that we have at home, and how to get them going in a line right into George's port. I also have to flush the port with saline and heperin. Yikes - that is a lot for a person who definitely NEVER wanted to go to med school.
So, while George was starting to feel a little bit better yesterday, today has been his worst day yet. He has been extremely tired and it has been difficult to get him to eat anything. At least I got him to drink a big glass of Gatorade tonight. I have to give him the antibiotics tonight at 10:00 and again at 6:00 a.m. tomorrow. I hope these start doing the trick. We should know more when we get the culture back tomorrow.
We're just counting the days until engrafting takes place and Geo can start feeling better again.
I guess fevers in transplant patients are pretty common, though, because before we even started this process they made us sign a contract with a home care company who delivered a box of antibiotics and tubes for us to keep ready at home. Today I was told that I would need to administer IV antibiotics to George three times a day at home. So, I learned how to mix the antibiotics, how to hang them from a pole that we have at home, and how to get them going in a line right into George's port. I also have to flush the port with saline and heperin. Yikes - that is a lot for a person who definitely NEVER wanted to go to med school.
So, while George was starting to feel a little bit better yesterday, today has been his worst day yet. He has been extremely tired and it has been difficult to get him to eat anything. At least I got him to drink a big glass of Gatorade tonight. I have to give him the antibiotics tonight at 10:00 and again at 6:00 a.m. tomorrow. I hope these start doing the trick. We should know more when we get the culture back tomorrow.
We're just counting the days until engrafting takes place and Geo can start feeling better again.
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