Today was my 4th treatment. Not that the 4th treatment is significant, but this was the first trip by myself and didn't have anything to crochet while I was waiting. I happened to be between projects. It may not seem like this is such a big deal, and I do love to read, but you have to understand the dynamics of a day at Duke and the Duke Treatment Room Waiting Room.
I arrive and check in for labs about 10. After I sit down, I usually have less than 10 minutes to wait for my labs to be drawn. I could pick up a book then, but would just have to put it down again, and I am always on alert for my name to be called. After labs are drawn, I go down the hall and check into the treatment room waiting room. The wait time here can be 1-2 hours or more. I have to wait on my labs to get back and from those results my doctor determines whether the Nplate dosage needs to be increased. There are people constantly in and out and any one of those people could be Dr. M with my counts. Pagers go off, people are talking on cell phones, and Rachael Ray is cooking something or the women of The View are talking. It's a very distracting environment and not conducive to reading! When I've taken my crochet, it gives me something to do instead of just sit. You can only play Angry Birds for so long and no one wants to sit and stare into space. Then you're that weird person staring at everyone. Needless to say, I have fresh yarn and a fresh pattern to begin! And I got yarn for a project that has to be finished by March 11. Very excited about that--these colors sat in the bin and YELLED at me to get them.
And so many people have been so kind and offered to go with me and I truly appreciate it, but I'm not ready for that yet. That may sound odd to everyone but my parents. I really do try to....not downplay the ITP, but not make it the driving force in my life. I'm having to take a lot of time out of work, and part of me feels like if more people take time off work, it makes this a much bigger deal than it is--and this is maintenance therapy. An emergency is different--I need/want support when I'm having urgent issues, because my urgent issues are a big deal.
Despite having a blog, my ITP is something I tend to keep close. I think what I like most about the blog is I can just write. I don't feel like anyone's going to feel sorry for me or pity me. I don't like telling the same story forty-eleven times, so it's much easier on me than the phone. If charted, my ITP history would look like a roller coaster with its good things and bad things. Early on, I discovered how frustrating it is to have good news one day, bad news the next, and it's exhausting to relay all that to people. My counts today were 244,000--in the normal range--YAY!--with the Nplate being the only medication. This is really encouraging. My dosage is going to stay the same for now, unless we see something different.
Monday, November 29, 2010
Friday, November 12, 2010
Double-Sided Post
Okay, the good news: I went to see a new gynecologist today at Duke about the irregular bleeding that's been going on since the end of August. She was awesome. I was in and out in less than an hour. She said, "This definitely isn't an issue due to your ITP, but how you're taking your birth control." So, she is switching my pill and how I take it, and we have a follow-up in 3 months. I am so relieved that she was able to tell me what was going on and also wants to check up on me later, not just go on my merry way.
The other news...Last Monday I got counts done and they were back down in the dumps: < 5 and I was having symptoms: blood when I blew my nose and mouth sores. Dr. M told me to get to Duke right away and he would go ahead and start me on the Nplate. So we're back to plan A...Or whichever letter it is. We'll just have to keep figuring it out as we go. I took one dose of dexamethasone Tuesday and it helped clear up my symptoms and didn't cause bad side effects. We'll keep on keeping on, and eventually get it all figured out.
The other news...Last Monday I got counts done and they were back down in the dumps: < 5 and I was having symptoms: blood when I blew my nose and mouth sores. Dr. M told me to get to Duke right away and he would go ahead and start me on the Nplate. So we're back to plan A...Or whichever letter it is. We'll just have to keep figuring it out as we go. I took one dose of dexamethasone Tuesday and it helped clear up my symptoms and didn't cause bad side effects. We'll keep on keeping on, and eventually get it all figured out.
Monday, November 1, 2010
Surprising yet wonderful news!
This weekend has gone by very quickly. Saturday was pretty much a haze of sleep and food. Dexamethasone withdrawals weren't as bad this time, as far as being moody, but boy was it rotten! I couldn't get comfortable, was hungry, my stomach hurt but things didn't taste right, couldn't think right, and didn't want to talk to anyone because I didn't know what I would say. Jimmy said it was a lot like I had a big hangover. I personally wouldn't know.
Sunday afternoon we headed up to Durham. Jimmy drove, which I was very thankful for. We checked into a hotel we've stayed in before, and caught dinner and a movie with Patrick.
This morning we got up and went to the clinic about 8:30. I started getting really nervous. They drew my blood around 9 and we sat. FOR AN HOUR. I went to the desk again, they called Dr. M, and he said he was still awaiting my counts. He said we could go wander around and he'd call my cell when he got the numbers. A few rounds of Angry Birds and a meal at Chick-Fil-A later (gotta love franchising within a hospital), Dr. M called and asked where we were. He told us to stay in the cafeteria and he'd be right down. Dr. M came into the cafe and hands me the test results.
241,000 PLATELETS.
More than I had on Friday....without any extra meds.
I'm sure the steroids were probably still working on my body, but still...241,000.
So where does this leave all our well-laid plans? Dr. M is content to let me get counts at home next week and not have to come in. We'll keep an eye on counts and symptoms, like we have been. If I get below 20,000 and start having symptoms, we'll start the Nplate. I have an appointment December 1st with him, so I'll have to be back in a month. But for now, I'm not going to have to do the Durham 500 once a week, and that's enough for me.
God does answer prayer. I have no doubt of that and I am beyond grateful for all of the prayers, love, and thoughts everyone has offered our way. With my experiences though, I know that His answers to those prayers are not always the ones we want to hear. And I know things can go the other way at any time. I feel very hopeful though, and excited to see what the future holds!
Sunday afternoon we headed up to Durham. Jimmy drove, which I was very thankful for. We checked into a hotel we've stayed in before, and caught dinner and a movie with Patrick.
This morning we got up and went to the clinic about 8:30. I started getting really nervous. They drew my blood around 9 and we sat. FOR AN HOUR. I went to the desk again, they called Dr. M, and he said he was still awaiting my counts. He said we could go wander around and he'd call my cell when he got the numbers. A few rounds of Angry Birds and a meal at Chick-Fil-A later (gotta love franchising within a hospital), Dr. M called and asked where we were. He told us to stay in the cafeteria and he'd be right down. Dr. M came into the cafe and hands me the test results.
241,000 PLATELETS.
More than I had on Friday....without any extra meds.
I'm sure the steroids were probably still working on my body, but still...241,000.
So where does this leave all our well-laid plans? Dr. M is content to let me get counts at home next week and not have to come in. We'll keep an eye on counts and symptoms, like we have been. If I get below 20,000 and start having symptoms, we'll start the Nplate. I have an appointment December 1st with him, so I'll have to be back in a month. But for now, I'm not going to have to do the Durham 500 once a week, and that's enough for me.
God does answer prayer. I have no doubt of that and I am beyond grateful for all of the prayers, love, and thoughts everyone has offered our way. With my experiences though, I know that His answers to those prayers are not always the ones we want to hear. And I know things can go the other way at any time. I feel very hopeful though, and excited to see what the future holds!
Friday, October 29, 2010
Duke Trip and outcomes from 10/27
I've held off on writing this post because I haven't felt great and I needed to get some things figured out at work. Now that things are ready to move forward, I'm ready to talk. Thanks to the steroids, my count today was 218,000, which is amazing for me. It also means my body has been working in major overdrive.
Jimmy and I made it into the clinic Wednesday morning. At the appointment, Dr. M looked me over and we decided that other than the nosebleed, there was nothing that would have brought me into clinic or needed treatment. We had a good deal of discussion about what would come next. Chronic diseases flare up occasionally. I haven't had major flare-ups since high school and college (when I was a standard, once-a-month fixture in the Duke Children's Hospital). Dr. M thinks this is a flare-up and I agree with him. Since the school year started, I've just been off. I've had the female symptoms and just haven't felt as good as I usually do. The conversation I've always had with Dr. M is that when my symptoms start affecting my quality of life, that's when we need to start some sort of maintenance treatment. I told him Wednesday that I put it in his hands. I said, "I can't have nosebleeds like this and live my life, work, and do the things that I love. I'm ready to start this medication whenever you say it's time." Dr. M said, "Okay, it's time."
Nplate is the new drug I will be taking. It is a subcutaneous shot that is platelet growth factor--if you remember the red blood cell stuff Lance Armstrong got in trouble for using, this is the same thing, except for platelets. The medicine has only been on the market for 2 years and is a controlled substance. This means that before I take it, I have to have blood work done to help determine the dosage and make sure my count is where it needs to be. Nplate is not used to make a platelet count within the normal range (150,000-350,000ish), but within a safe range, approximately 50,000. I am also now in the Nexus Nplate registry. Part of being on this drug means the drug has to be administered in the office of the prescribing physician, which also means I will be going to Duke once a week.
This was the most stressful part for me. The medicine doesn't scare me because we have been finding out information on it for about a year. But what am I going to do with my "kids"? Thank God for a supportive work family.
I spoke with my principal on Thursday. She was truly wonderful. I found a sub who is able to come in for the Mondays between now and Christmas. My kids will work hard for her and I know she will do a great job. I am blessed beyond belief with my students. They are one of the best behaved groups of kids I've ever taught. My wonderful coworkers have also been just amazing. Despite being on steroids and not feeling like myself, I've been humbled by their kind words, thoughts, and offers.
Segueing, this round of Dexamethasone/Decadron is much different from what I remember. I am much more in charge of my emotions and haven't had major mood swings. However, I am in a lot more pain than I remember being in before. My bones, teeth, and stomach hurt. I've been hungry, but certain foods turn my stomach and don't taste normal. I've woken up about 3:45, 4:30 the past few mornings just wide awake. I've been trying to listen to my body and do what it says to make life easier for these 4 days. Tomorrow is my first day without steroids. Coming off of them will be very difficult--like going 100 miles an hour then hitting a sudden stop. Again, I'm very thankful for my wonderful husband, who I have warned and my father has pitied for this round of steroids. Even when we forget, God is looking out for us.
Jimmy and I made it into the clinic Wednesday morning. At the appointment, Dr. M looked me over and we decided that other than the nosebleed, there was nothing that would have brought me into clinic or needed treatment. We had a good deal of discussion about what would come next. Chronic diseases flare up occasionally. I haven't had major flare-ups since high school and college (when I was a standard, once-a-month fixture in the Duke Children's Hospital). Dr. M thinks this is a flare-up and I agree with him. Since the school year started, I've just been off. I've had the female symptoms and just haven't felt as good as I usually do. The conversation I've always had with Dr. M is that when my symptoms start affecting my quality of life, that's when we need to start some sort of maintenance treatment. I told him Wednesday that I put it in his hands. I said, "I can't have nosebleeds like this and live my life, work, and do the things that I love. I'm ready to start this medication whenever you say it's time." Dr. M said, "Okay, it's time."
Nplate is the new drug I will be taking. It is a subcutaneous shot that is platelet growth factor--if you remember the red blood cell stuff Lance Armstrong got in trouble for using, this is the same thing, except for platelets. The medicine has only been on the market for 2 years and is a controlled substance. This means that before I take it, I have to have blood work done to help determine the dosage and make sure my count is where it needs to be. Nplate is not used to make a platelet count within the normal range (150,000-350,000ish), but within a safe range, approximately 50,000. I am also now in the Nexus Nplate registry. Part of being on this drug means the drug has to be administered in the office of the prescribing physician, which also means I will be going to Duke once a week.
This was the most stressful part for me. The medicine doesn't scare me because we have been finding out information on it for about a year. But what am I going to do with my "kids"? Thank God for a supportive work family.
I spoke with my principal on Thursday. She was truly wonderful. I found a sub who is able to come in for the Mondays between now and Christmas. My kids will work hard for her and I know she will do a great job. I am blessed beyond belief with my students. They are one of the best behaved groups of kids I've ever taught. My wonderful coworkers have also been just amazing. Despite being on steroids and not feeling like myself, I've been humbled by their kind words, thoughts, and offers.
Segueing, this round of Dexamethasone/Decadron is much different from what I remember. I am much more in charge of my emotions and haven't had major mood swings. However, I am in a lot more pain than I remember being in before. My bones, teeth, and stomach hurt. I've been hungry, but certain foods turn my stomach and don't taste normal. I've woken up about 3:45, 4:30 the past few mornings just wide awake. I've been trying to listen to my body and do what it says to make life easier for these 4 days. Tomorrow is my first day without steroids. Coming off of them will be very difficult--like going 100 miles an hour then hitting a sudden stop. Again, I'm very thankful for my wonderful husband, who I have warned and my father has pitied for this round of steroids. Even when we forget, God is looking out for us.
Wednesday, October 27, 2010
An Ode to My Husband...or...Why Midwives Made Men Boil Water
Jimmy Swindell is the most amazing man I've ever met. I never really envisioned dealing with my ITP throughout adulthood, but I could not ask for a better partner for dealing with all this. When anything goes wrong, he is right there, asking what I need and offering to do things for me. However, when my nose was bleeding today and there was really not much he could do, I felt so bad for him. All he wanted to do was help make things better and yet, there were very few things he could do. Jimmy did get me some things I needed, drove me to school and Walgreens, and fixed my lunch, but he could not heat up a bowl of soup that would stop my bleeding. I hated it for him, but it led to a revelation.
This is why midwives made husbands go boil water when they were delivering babies.
When water had to be boiled for births, I'm sure it was an ordeal. The husband had to go chop wood, build up the fire, draw the water, and wait on it to boil. I've read that way back when, people obviously weren't on the up and up on hygiene, so really, there was no point in having boiling water. Obviously, it was a ploy to get men out of the way since there was really nothing they could do to assist the birth process, or so was the thought of the times, but at least getting the water to boil made them feel like they were doing something to help and kept them busy. Sometimes I think life was better then.
Don't get me wrong--Jimmy never got on my nerves or aggravated me with his attentions. I appreciated his lovingness and willingness to help during my grossest moments. There are some ITP-related things I never thought I'd do in front of people other than Mom and Dad.
Jimmy, I love you and am thankful beyond words for your love and support. You didn't pick an easy woman for a wife, but we make an amazing team. The next few days on decadron are going to be a rollercoaster, then this weekend coming off of it, but we'll make it through.
This is why midwives made husbands go boil water when they were delivering babies.
When water had to be boiled for births, I'm sure it was an ordeal. The husband had to go chop wood, build up the fire, draw the water, and wait on it to boil. I've read that way back when, people obviously weren't on the up and up on hygiene, so really, there was no point in having boiling water. Obviously, it was a ploy to get men out of the way since there was really nothing they could do to assist the birth process, or so was the thought of the times, but at least getting the water to boil made them feel like they were doing something to help and kept them busy. Sometimes I think life was better then.
Don't get me wrong--Jimmy never got on my nerves or aggravated me with his attentions. I appreciated his lovingness and willingness to help during my grossest moments. There are some ITP-related things I never thought I'd do in front of people other than Mom and Dad.
Jimmy, I love you and am thankful beyond words for your love and support. You didn't pick an easy woman for a wife, but we make an amazing team. The next few days on decadron are going to be a rollercoaster, then this weekend coming off of it, but we'll make it through.
Tuesday, October 26, 2010
Nosebleeds, ugh! A lengthy post
Today was the worst nosebleed of my entire life. I can say that scientifically, because usually they will stop after holding them a few minutes. Early on in my ITP journey, it would take longer to hold them, but they would stop for a while. I was getting ready to go to my second inclusion class of the day, at 9:45, and while using the bathroom noticed my nose was dripping a little bit. I held it for a couple of minutes and thought that would be enough. I've had a chest cold, but I didn't have any upper respiratory issues, just lower.
During the class, I tried to sit still as much as I could, since movement makes it worse. I was still sniffling a little bit. I took my second pull-out group at 10:15, still sniffling. I used some tissue to hold my nose, and since my kids were doing assessments and I've rearranged my desks as a group, we were good. They were productive and I was able to assist them as needed. But my nose still wasn't stopping. At this point, it was a little after 11 and I knew I needed to call Dr. M and get home where I could put my feet up and get my blood pressure as low as possible. Stress also makes my nosebleeds worse.
I got home and called Dr. M. He suggested I hold it for another 45 minutes and see if it stops. He called the Infusion clinic to see if space would be available should I need IVIG, and we would reconvene after 45 minutes. My dear, dear husband offered to bring me anything I needed. I lay on the couch, held my nose, and we watched "The Science of Dogs," a National Geographic 45 minute special. Perfect timing, right? My nosebleed stopped and I called Dr. M. We said, "Ok, sounds great, see you in December at our regular appointment."
Of course, 10 minutes after I hung up, it started bleeding again when Jimmy was washing out my washcloth and I had to use the bathroom. So we called back. We (Dr. M, Jimmy, and I) debated over whether Jimmy and I should come to the Duke ER (the infusion clinic was packed today and will be tomorrow) to get IVIG or if calling in a decadron (high dose steroids) would be more beneficial. In the time it would take for us to drive to Duke and get processed through the ER, I could have already taken the decadron and it begin working in my body. Dr. M called in the decadron. However, Dr. M still wants to see me in the morning, and we're going to do, "Whatever it takes to get that %*$#@^ spackled shut." Jimmy drove me by school (still bleeding) so I could set out emergency sub plans and talk to my principal. She is a bottom-line person, but that doesn't mean she doesn't care. She wants to know what's going on with her staff and help make sure we are taking care of ourselves.
Decadron doesn't come in a 40 mg tab, which is the correct dosage for me. IT COMES IN A 4 MG TAB. That means taking 10 pills at one time. But hey, I can do anything if it'll stop the bleeding. As soon as Jimmy and I got home, I took my pills. He went on to work. He and I decided we would just go to Rocky Mount (and stay with my wonderful MIL) after he got off work. I know he was worried about leaving me, but there was really nothing he could do, unless things got worse, and I'd already taken my meds. Jimmy gave me strict orders that, "If the shit hits the fan, call me, then call Lauren." I promised and got settled on the bed with a washcloth, a cup to spit in, a glass of water, and my laptop. I even took a short nap because I know steroids will mess with my sleep and make me super restless.
Right now, my nose has stopped bleeding. I can totally feel the decadron kicking in and am getting a lot of jittery energy. Heck, maybe I'll get the house cleaned before Jimmy gets home at 11:45 and we leave.
During the class, I tried to sit still as much as I could, since movement makes it worse. I was still sniffling a little bit. I took my second pull-out group at 10:15, still sniffling. I used some tissue to hold my nose, and since my kids were doing assessments and I've rearranged my desks as a group, we were good. They were productive and I was able to assist them as needed. But my nose still wasn't stopping. At this point, it was a little after 11 and I knew I needed to call Dr. M and get home where I could put my feet up and get my blood pressure as low as possible. Stress also makes my nosebleeds worse.
I got home and called Dr. M. He suggested I hold it for another 45 minutes and see if it stops. He called the Infusion clinic to see if space would be available should I need IVIG, and we would reconvene after 45 minutes. My dear, dear husband offered to bring me anything I needed. I lay on the couch, held my nose, and we watched "The Science of Dogs," a National Geographic 45 minute special. Perfect timing, right? My nosebleed stopped and I called Dr. M. We said, "Ok, sounds great, see you in December at our regular appointment."
Of course, 10 minutes after I hung up, it started bleeding again when Jimmy was washing out my washcloth and I had to use the bathroom. So we called back. We (Dr. M, Jimmy, and I) debated over whether Jimmy and I should come to the Duke ER (the infusion clinic was packed today and will be tomorrow) to get IVIG or if calling in a decadron (high dose steroids) would be more beneficial. In the time it would take for us to drive to Duke and get processed through the ER, I could have already taken the decadron and it begin working in my body. Dr. M called in the decadron. However, Dr. M still wants to see me in the morning, and we're going to do, "Whatever it takes to get that %*$#@^ spackled shut." Jimmy drove me by school (still bleeding) so I could set out emergency sub plans and talk to my principal. She is a bottom-line person, but that doesn't mean she doesn't care. She wants to know what's going on with her staff and help make sure we are taking care of ourselves.
Decadron doesn't come in a 40 mg tab, which is the correct dosage for me. IT COMES IN A 4 MG TAB. That means taking 10 pills at one time. But hey, I can do anything if it'll stop the bleeding. As soon as Jimmy and I got home, I took my pills. He went on to work. He and I decided we would just go to Rocky Mount (and stay with my wonderful MIL) after he got off work. I know he was worried about leaving me, but there was really nothing he could do, unless things got worse, and I'd already taken my meds. Jimmy gave me strict orders that, "If the shit hits the fan, call me, then call Lauren." I promised and got settled on the bed with a washcloth, a cup to spit in, a glass of water, and my laptop. I even took a short nap because I know steroids will mess with my sleep and make me super restless.
Right now, my nose has stopped bleeding. I can totally feel the decadron kicking in and am getting a lot of jittery energy. Heck, maybe I'll get the house cleaned before Jimmy gets home at 11:45 and we leave.
Wednesday, September 8, 2010
Negative Frame of Reference
I've been having some bleeding. I miss one birth control pill, and 4 days later start bleeding. It hasn't ever completely stopped--it lightens up, but then starts over again--and it's been almost 2 weeks now. I had a normal period when I was off birth control for that month, and I've had breakthrough bleeding before, but this is different. Added to that some random bruising, gum bleeding, and nosebleeds, I called my hematologist. I almost fell over when the first thing out of his mouth was, "Could you be pregnant?"
What?
This never even crossed my mind. I mean, since this summer I've taken it as a done deal--pregnancy is not an option. I somehow managed to sputter out an answer, "I don't know, I don't think so....my husband is working second shift!" After some conversation, we decided I needed to get in to see my ob/gyn and make sure everything was ok in that respect. If that is ok, we are going to go from there. Dr. M said we would look into the platelet growth factors because of how the other treatments have not worked. I then put a call into my ob/gyn's office, and 2 phone calls during a faculty meeting leter, have an appointment for 8:45 tomorrow morning. I seriously doubt I'm pregnant, but we have to rule that out just to be sure.
It may be nothing. However, the only frame of reference I have regarding new medications/new situations is negative. It takes me back to high school when, instead of sports and parties, it was hospitals and medicines. At least by college there was stability. And I don't understand why this is going on. My allergies have been acting up---could that immune response be related to my symptoms? If for whatever reason my body is deciding to go back to that high school state, I have a lot of fears. Again, this bleeding may be nothing and I hope that's what it is. But the only frame of reference I have is a negative one, so I guess I'll just bake and wait.
What?
This never even crossed my mind. I mean, since this summer I've taken it as a done deal--pregnancy is not an option. I somehow managed to sputter out an answer, "I don't know, I don't think so....my husband is working second shift!" After some conversation, we decided I needed to get in to see my ob/gyn and make sure everything was ok in that respect. If that is ok, we are going to go from there. Dr. M said we would look into the platelet growth factors because of how the other treatments have not worked. I then put a call into my ob/gyn's office, and 2 phone calls during a faculty meeting leter, have an appointment for 8:45 tomorrow morning. I seriously doubt I'm pregnant, but we have to rule that out just to be sure.
It may be nothing. However, the only frame of reference I have regarding new medications/new situations is negative. It takes me back to high school when, instead of sports and parties, it was hospitals and medicines. At least by college there was stability. And I don't understand why this is going on. My allergies have been acting up---could that immune response be related to my symptoms? If for whatever reason my body is deciding to go back to that high school state, I have a lot of fears. Again, this bleeding may be nothing and I hope that's what it is. But the only frame of reference I have is a negative one, so I guess I'll just bake and wait.
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