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.
Thursday, August 12, 2010
New design, new plan
Last night after posting, I got kind of restless with the look of this blog and totally redid it. It's not about trying to get pregnant anymore. It's more about this ITP story. I think I will update the rest of my history at some point. We'll just see...
Today is a good day. The psychologist at Duke emailed me back and has some referrals. We'll take it from there!
Today is a good day. The psychologist at Duke emailed me back and has some referrals. We'll take it from there!
Wednesday, August 11, 2010
Good Days, Bad Days
Yesterday was a good day. A really good day, and I'm still excited about yesterday.
Today was not such a good day. Something happened this morning that upset me and it has hung over the rest of the day like a rain cloud. Jimmy and I somehow slept extremely late this morning. Staying up til almost 3 probably had something to do with it, and was no help to my emotional state this morning/early afternoon. It's kind of been brewing, I've felt apathetic about quite a few things lately. I wish I had someone to talk to who could actually empathize and offer guidance. There are a ton of resources for infertility, but infertility is a different animal from what I'm dealing with. I still have the therapist's name from Duke and I've sent her an email requesting a referral to someone in this area. I do need to get my medication refilled, and I will do that first thing tomorrow. I have been trying to keep busy with sewing. It's helped some.
I do want to take a vacation, like another cruise, but I know deep-down that won't solve anything. All the issues are still going to exist and need to be dealt with. It kind of reminds me of the scene in The Sound of Music when Maria comes back to the Von Trapp estate and Liesl tells Maria there haven't been any telegrams, "But I'm learning to deal with it. I'll be glad when school starts." Maria replies, "You can't use school to escape your problems. You have to face them!" Thanks Maria.
Today was not such a good day. Something happened this morning that upset me and it has hung over the rest of the day like a rain cloud. Jimmy and I somehow slept extremely late this morning. Staying up til almost 3 probably had something to do with it, and was no help to my emotional state this morning/early afternoon. It's kind of been brewing, I've felt apathetic about quite a few things lately. I wish I had someone to talk to who could actually empathize and offer guidance. There are a ton of resources for infertility, but infertility is a different animal from what I'm dealing with. I still have the therapist's name from Duke and I've sent her an email requesting a referral to someone in this area. I do need to get my medication refilled, and I will do that first thing tomorrow. I have been trying to keep busy with sewing. It's helped some.
I do want to take a vacation, like another cruise, but I know deep-down that won't solve anything. All the issues are still going to exist and need to be dealt with. It kind of reminds me of the scene in The Sound of Music when Maria comes back to the Von Trapp estate and Liesl tells Maria there haven't been any telegrams, "But I'm learning to deal with it. I'll be glad when school starts." Maria replies, "You can't use school to escape your problems. You have to face them!" Thanks Maria.
Tuesday, August 3, 2010
Reproductive Endocrinology appointment
Yesterday we had an appointment with a reproductive endocrinologist. This is a fancy term for a fertility specialist. Dr. Copland also has impressive credentials like Dr. James does. I think she's even been on TV, but I can't find the link. She is on WebMD. We made this appointment at the Dr. James appointment, but as the appointment grew closer over the weekend, I started really not wanting to go. I told Jimmy it would be a waste of time, but he still wanted to go to see what they would have to say. Dr. James had mentioned they would have more information about adoption.
Backing up a little bit, Jimmy and I have decided surrogacy is not for us. If the child could genetically be ours, we might consider it. If we really wanted to do it, I have no doubt we could put aside the money. But if the child wouldn't genetically be ours, why not just adopt a child who already exists and whose birth parents aren't able to take care of him/her, and make their life better? We don't need to create life in order to love it. For us, it's just not the right choice right now.
Arriving at the clinic, the registration desk hands me a pack of papers (any of you who have ever been to a fertility clinic know how thick this pack is), and informs me they need to be filled out. Stuttering, I try to tell the girl that we're just here for a consultation, but she shuts me down and hands me the packs. If I had known the doctor didn't need the papers before our appointment, I wouldn't have filled them out. The questions mostly centered around trying to get pregnant--cycles, previous tests, medications, etc. It was upsetting. I wanted to give the papers back and say, "You don't understand. We're here because I'm not allowed to do this." Instead I cried and got a nosebleed. Geeze.
30 minutes past our appointment time, when I was close to complaining to the registration desk, we were called back. The nurse apologized, saying she thought we were with the center's psychologist. Dr. Copland came in and I had to ask Jimmy to talk to her, because I knew I was going to be upset. Again. He explained what Dr. James had told us. I regained composure and was able to ask about the egg retrieval process and why it might be damaging. She explained how it worked and added that many women have some kind of bleeding with the process. We told her we weren't very interested using someone else's eggs. Jimmy asked her about the adoption information they might be able to give us. Dr. Copland said they didn't have anyone they "recommended," only names of agencies that had been recommended by patients who, for whatever reason, chose that route. She was very kind and printed out the information for us. She explained about a few different programs they had and said the clinic would be happy to help us if we ever wanted to use their services. During one of the times she was out of the room, Jimmy turned to me and said, "Write down this date." When I asked why, he said, "Because you were right." Great doctor, great facility...just not the path we want to take.
There is good news. After the appointment, we had lunch at PF Changs and really discussed what we want our next steps to be. We decided if we can't have our own biological children, we want to hold off on adoption or fostering. We do want to find a place with more land (still in the area we are now) and sell our house. Jimmy likes night shift a LOT better at his work and I love my school. We want to actually do Financial Peace University and stop talking about doing it. We want to get rid of a lot of "stuff" that just sits around our house and doesn't get used. I want to do more sewing and baking. We may want to foster dogs and small animals. I want to learn how to ride a horse.
We really appreciate all the prayers that have been sent up for us and all the kind words and thoughts. God does have a purpose for us, and plans to give us a hope and a future. If you're praying, please pray that we will know God's plans when they are revealed to us.
Backing up a little bit, Jimmy and I have decided surrogacy is not for us. If the child could genetically be ours, we might consider it. If we really wanted to do it, I have no doubt we could put aside the money. But if the child wouldn't genetically be ours, why not just adopt a child who already exists and whose birth parents aren't able to take care of him/her, and make their life better? We don't need to create life in order to love it. For us, it's just not the right choice right now.
Arriving at the clinic, the registration desk hands me a pack of papers (any of you who have ever been to a fertility clinic know how thick this pack is), and informs me they need to be filled out. Stuttering, I try to tell the girl that we're just here for a consultation, but she shuts me down and hands me the packs. If I had known the doctor didn't need the papers before our appointment, I wouldn't have filled them out. The questions mostly centered around trying to get pregnant--cycles, previous tests, medications, etc. It was upsetting. I wanted to give the papers back and say, "You don't understand. We're here because I'm not allowed to do this." Instead I cried and got a nosebleed. Geeze.
30 minutes past our appointment time, when I was close to complaining to the registration desk, we were called back. The nurse apologized, saying she thought we were with the center's psychologist. Dr. Copland came in and I had to ask Jimmy to talk to her, because I knew I was going to be upset. Again. He explained what Dr. James had told us. I regained composure and was able to ask about the egg retrieval process and why it might be damaging. She explained how it worked and added that many women have some kind of bleeding with the process. We told her we weren't very interested using someone else's eggs. Jimmy asked her about the adoption information they might be able to give us. Dr. Copland said they didn't have anyone they "recommended," only names of agencies that had been recommended by patients who, for whatever reason, chose that route. She was very kind and printed out the information for us. She explained about a few different programs they had and said the clinic would be happy to help us if we ever wanted to use their services. During one of the times she was out of the room, Jimmy turned to me and said, "Write down this date." When I asked why, he said, "Because you were right." Great doctor, great facility...just not the path we want to take.
There is good news. After the appointment, we had lunch at PF Changs and really discussed what we want our next steps to be. We decided if we can't have our own biological children, we want to hold off on adoption or fostering. We do want to find a place with more land (still in the area we are now) and sell our house. Jimmy likes night shift a LOT better at his work and I love my school. We want to actually do Financial Peace University and stop talking about doing it. We want to get rid of a lot of "stuff" that just sits around our house and doesn't get used. I want to do more sewing and baking. We may want to foster dogs and small animals. I want to learn how to ride a horse.
We really appreciate all the prayers that have been sent up for us and all the kind words and thoughts. God does have a purpose for us, and plans to give us a hope and a future. If you're praying, please pray that we will know God's plans when they are revealed to us.
Monday, July 26, 2010
It was fun while it lasted...
Last Tuesday, Jimmy and I had an appointment with Dr. Andra James, an internationally recognized obstetrician/gynecologist who specializes in women with blood disorders. You can read more about her here. If you don't want to read her bio, just know she has a ton of experience and has written lots of papers. She was extremely compassionate and kind to us during our visit. The fellow who was with her, Dr. Ransom, was also very kind and sweet.
That said, the appointment did not go as we wanted it to.
I had hopes that there would be something we could do to manage my ITP during a pregnancy. Surely with all we know about medicine, there is some kind of protocol for people like me who want to have children.
The bottom line is there is not.
Dr. James did not break the news to us this bluntly. She discussed how out of the thousands of women who have ITP, there are only a small handful of people who have platelet counts like me. My counts hang out in the single digit thousands. Normal women experience approximately a 15% drop in platelet counts. I don't have anywhere to go. Dr. James explained that a period is a minor bleeding incident and can be handled easily. Even labor can be handled, by having a stockpile of platelets and steroids. The real risk lies in carrying a baby. Between the placenta and uterine wall, there is a dinner-plate sized space that is filled with blood. Normally, if there are issues, platelets quickly move in to plug up any holes and stop bleeding. In my situation, this may not happen effectively, causing me to lose a baby and possibly endangering my life. There would be approximately a 5% mortality rate Some women are able to manage pregnancy by using steroids and IVIG intermittently, but these are not long term options, due to their side effects. She even went so far as to say if I were to become pregnant, due to some birth control snafu, their suggestion would be termination.
I didn't realize the mortality rate. That pretty much seals the deal for Jimmy and me. This was hard. Tuesday was awful. I cried so much, I couldn't understand how I had anymore tears left.
Where does this leave us? We have two options:
1)Surrogate mother, using donor eggs. Because of the process used to collect eggs, Dr. James feels it would be too risky to use my own eggs.
2) Adoption
#1 is really not something either of us is interested in. It's expensive, like $50,000. If we could use my eggs, it may be a more agreeable option. I'm selfish yet honest enough to say that I don't want another woman having a baby with my husband.
I've always felt strongly about adoption. I see so many children mistreated through my job that I know the need is there. We're considering fostering and seeing if it will lead to adoption.
As my Nanny was so quick to remind me, Jimmy and I have each other and a great relationship, which is not something a lot of people can say. I know as long as we have each other, we can make it through anything. And, as Lauren pointed out (nobody else had mentioned this, and I love her all the more for it), who knows what kind of advances the next 5 years could bring?
I don't know that I'll be updating this blog anymore...but I wanted to put this last section of our story out here and let people know. It was a great month that Jimmy and I had the hope of getting pregnant and having our own natural child, and I'm not upset about it. I felt that I was doing what God wanted us to do, and how can I be upset about that? We'll just have to see what windows He opens.
That said, the appointment did not go as we wanted it to.
I had hopes that there would be something we could do to manage my ITP during a pregnancy. Surely with all we know about medicine, there is some kind of protocol for people like me who want to have children.
The bottom line is there is not.
Dr. James did not break the news to us this bluntly. She discussed how out of the thousands of women who have ITP, there are only a small handful of people who have platelet counts like me. My counts hang out in the single digit thousands. Normal women experience approximately a 15% drop in platelet counts. I don't have anywhere to go. Dr. James explained that a period is a minor bleeding incident and can be handled easily. Even labor can be handled, by having a stockpile of platelets and steroids. The real risk lies in carrying a baby. Between the placenta and uterine wall, there is a dinner-plate sized space that is filled with blood. Normally, if there are issues, platelets quickly move in to plug up any holes and stop bleeding. In my situation, this may not happen effectively, causing me to lose a baby and possibly endangering my life. There would be approximately a 5% mortality rate Some women are able to manage pregnancy by using steroids and IVIG intermittently, but these are not long term options, due to their side effects. She even went so far as to say if I were to become pregnant, due to some birth control snafu, their suggestion would be termination.
I didn't realize the mortality rate. That pretty much seals the deal for Jimmy and me. This was hard. Tuesday was awful. I cried so much, I couldn't understand how I had anymore tears left.
Where does this leave us? We have two options:
1)Surrogate mother, using donor eggs. Because of the process used to collect eggs, Dr. James feels it would be too risky to use my own eggs.
2) Adoption
#1 is really not something either of us is interested in. It's expensive, like $50,000. If we could use my eggs, it may be a more agreeable option. I'm selfish yet honest enough to say that I don't want another woman having a baby with my husband.
I've always felt strongly about adoption. I see so many children mistreated through my job that I know the need is there. We're considering fostering and seeing if it will lead to adoption.
As my Nanny was so quick to remind me, Jimmy and I have each other and a great relationship, which is not something a lot of people can say. I know as long as we have each other, we can make it through anything. And, as Lauren pointed out (nobody else had mentioned this, and I love her all the more for it), who knows what kind of advances the next 5 years could bring?
I don't know that I'll be updating this blog anymore...but I wanted to put this last section of our story out here and let people know. It was a great month that Jimmy and I had the hope of getting pregnant and having our own natural child, and I'm not upset about it. I felt that I was doing what God wanted us to do, and how can I be upset about that? We'll just have to see what windows He opens.
Monday, July 12, 2010
Scientifically, we've done all we can do.
Since getting the go-ahead from my hematologist (finally, after being told "NO" in January), Jimmy and I have been off birth control. The end of last week and this weekend were my fertile period.
I tend to get a little OCD about things. Of course, this is one of those things. My thoughts are the sooner we get pregnant, the less periods I have, and that can only be a good thing. So of course, I have an app on my phone, Clear Blue Easy ovulation predictor sticks, and started taking my temperature everyday. We've done what we can do, the rest is up to God. My fingers are crossed and I'm saying my prayers.
I tend to get a little OCD about things. Of course, this is one of those things. My thoughts are the sooner we get pregnant, the less periods I have, and that can only be a good thing. So of course, I have an app on my phone, Clear Blue Easy ovulation predictor sticks, and started taking my temperature everyday. We've done what we can do, the rest is up to God. My fingers are crossed and I'm saying my prayers.
Diagnosis History, part deux
I finally started high school Monday, August 11th, 1997. I was sure everything was going to be okay now, that this ITP thing was just an oddity. I had to get bloodwork done, but that was not a big deal compared to the weekend in the hospital. When my counts came back, they were once again in the single digits. Dr. P wanted us to come back in to do a bone marrow aspiration and look at doing steroids.
In case you're not familiar, a bone marrow aspiration involves sticking a needle in your bone and extracting some of the marrow to study. CMC is a teaching hospital, and the medical student who observed the procedure looked JUST LIKE Shemar Moore, formerly of The Young and the Restless fame. I remember talking up a storm because I was so nervous. The aspiration wasn't as bad as I thought it would be. I began steroids later that day. I remember distinctly being told I couldn't have sugar, because the decadron interfered with blood sugar, and I lay on the living room floor, drinking diet Pepsi while my dad picked up my brothers from school. The decadron really threw me for a loop over the next few days. I was emotional, starving, etc....and there wasn't anything I could do about it.
August and September were a bit of a blur and no lasting improvements, but in October, frustrations came to a head. My mother and grandmother took me to see a homeopathic healer. He suggested $300 worth of pills and liquids that we bought. I began an extensive regimen of chlorophyll, shark oil, aloe vera juice, and many other natural treatments. For this month, we rejected modern treatments and took 30 pills a day, and 2 drinks. I do know somewhere in this time, I began getting the Depo-Provera shot to help with my periods. It seemed as though I would start to get on the right track, have my period, and lose all my progress. Depo was an answer to prayer, natural treatments however, were not. We did not see any increase of counts or lessening of symptoms.
The first weekend in November, two of my best friends were having a joint birthday party and my brother was having a birthday sleepover. I was so psyched to be going to this high school party, my first one. I was getting ready in the bathroom and began singing along with the radio. The words that were coming out of my mouth were not the words I wanted them to be. I thought this was hilarious. I went into the kitchen to tell my mom, who did not find the episode nearly as funny as I did. My words were still coming out all mixed up. My mother knew something wasn't right.
Of course, my dad was gone to pick up pizzas, and in our rural area, this would probably take an hour. My mom had several little boys to take care of, but a family friend was coming over to help out. After the episode, I started getting a really bad headache. My mom called our friend to see if she could go ahead and come over, then called the hospital to let them know what was going on and that we were coming in. This was before cellphones were so prevalent, so I don't think my dad knew what was going on until he came back. My mom and I sped off to Charlotte, emergency flashers on.
In case you're not familiar, a bone marrow aspiration involves sticking a needle in your bone and extracting some of the marrow to study. CMC is a teaching hospital, and the medical student who observed the procedure looked JUST LIKE Shemar Moore, formerly of The Young and the Restless fame. I remember talking up a storm because I was so nervous. The aspiration wasn't as bad as I thought it would be. I began steroids later that day. I remember distinctly being told I couldn't have sugar, because the decadron interfered with blood sugar, and I lay on the living room floor, drinking diet Pepsi while my dad picked up my brothers from school. The decadron really threw me for a loop over the next few days. I was emotional, starving, etc....and there wasn't anything I could do about it.
August and September were a bit of a blur and no lasting improvements, but in October, frustrations came to a head. My mother and grandmother took me to see a homeopathic healer. He suggested $300 worth of pills and liquids that we bought. I began an extensive regimen of chlorophyll, shark oil, aloe vera juice, and many other natural treatments. For this month, we rejected modern treatments and took 30 pills a day, and 2 drinks. I do know somewhere in this time, I began getting the Depo-Provera shot to help with my periods. It seemed as though I would start to get on the right track, have my period, and lose all my progress. Depo was an answer to prayer, natural treatments however, were not. We did not see any increase of counts or lessening of symptoms.
The first weekend in November, two of my best friends were having a joint birthday party and my brother was having a birthday sleepover. I was so psyched to be going to this high school party, my first one. I was getting ready in the bathroom and began singing along with the radio. The words that were coming out of my mouth were not the words I wanted them to be. I thought this was hilarious. I went into the kitchen to tell my mom, who did not find the episode nearly as funny as I did. My words were still coming out all mixed up. My mother knew something wasn't right.
Of course, my dad was gone to pick up pizzas, and in our rural area, this would probably take an hour. My mom had several little boys to take care of, but a family friend was coming over to help out. After the episode, I started getting a really bad headache. My mom called our friend to see if she could go ahead and come over, then called the hospital to let them know what was going on and that we were coming in. This was before cellphones were so prevalent, so I don't think my dad knew what was going on until he came back. My mom and I sped off to Charlotte, emergency flashers on.
Wednesday, July 7, 2010
The journey begins...
My ITP journey started at volleyball tryouts in August 1997. After a day of practice, my forearms turned purple and red from hitting the ball. My parents didn't know what was going on, so they made an appointment with my pediatrician's office. I was with my mom, and my dad had my brothers at his school for a teacher workday and cross country practice. Once at the clinic, the doctor ordered a blood count...I'm not sure what my counts were, but I'm fairly certain they were in the single digits. I remember it was the doctor's second day on the job. She made a preliminary diagnosis of Idiopathic Thrombocytopenia Purpura and shuttled us off to the hematologist who just happened to be spending his day at our local hospital instead of Carolinas Medical Center.
My dad and brothers joined us for the afternoon appointment with Dr. P. Dr. P wanted us to check in at CMC that evening and begin a course of IVIG. My dad reminded my mom and I to eat a good dinner on our way, because who knows what they would feed me at the hospital. We ate Chinese buffet and headed on to the hospital. Oh, did I mention that my first day of high school was supposed to be the following day? Totally missed the first 2 days.
I remember very little about that initial hospital visit, except for a few things. When we first got there and were waiting to check in, we began talking to an older woman. I'm sure we told her why we were there and we didn't know what was really going on and we were scared. I remember her putting her arms around me, praying for me, and saying she knew God was going to take care of me and had big plans for me. I remember finally getting on the floor and in a room, and a medical student taking my ENTIRE medical history, from conception forward. Oddly enough, I had such a fear of getting stuck before being diagnosed with ITP, but I can't remember anything about the first IV being put in.
I was there for 2 days, getting IVIG each night. The bag looked like a cow udder. Now I understand that they diluted the IVIG with saline. The staff there was wonderful. Everyone acted like this dose of medicine would make me fine, I could go home and start living my life again.
I've never been good at doing what I was told...
My dad and brothers joined us for the afternoon appointment with Dr. P. Dr. P wanted us to check in at CMC that evening and begin a course of IVIG. My dad reminded my mom and I to eat a good dinner on our way, because who knows what they would feed me at the hospital. We ate Chinese buffet and headed on to the hospital. Oh, did I mention that my first day of high school was supposed to be the following day? Totally missed the first 2 days.
I remember very little about that initial hospital visit, except for a few things. When we first got there and were waiting to check in, we began talking to an older woman. I'm sure we told her why we were there and we didn't know what was really going on and we were scared. I remember her putting her arms around me, praying for me, and saying she knew God was going to take care of me and had big plans for me. I remember finally getting on the floor and in a room, and a medical student taking my ENTIRE medical history, from conception forward. Oddly enough, I had such a fear of getting stuck before being diagnosed with ITP, but I can't remember anything about the first IV being put in.
I was there for 2 days, getting IVIG each night. The bag looked like a cow udder. Now I understand that they diluted the IVIG with saline. The staff there was wonderful. Everyone acted like this dose of medicine would make me fine, I could go home and start living my life again.
I've never been good at doing what I was told...
Monday, July 5, 2010
There's not much out there...
In the meantime, Who am I? I am Amanda Swindell, a 27 year old Special Education teacher in North Carolina. I have been married to my husband Jimmy since October 18, 2008. We met in January 2006 online in a Yahoo chat room, and met in person the first weekend of that February. I moved 6 hours away from my family to be closer to him. We have 2 dogs, Sadie and Katie, and 1 cat, Remus. We love fishing, road trips, going to the beach, and working on old vehicles...well, Jimmy works on them, and I appreciate the outcomes! I went to Chapel Hill and majored in Recreation Therapy, which did not turn into a career, but pushed me in the direction of teaching.
What's your story? How long have you had ITP and what treatments have you experienced?
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