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.
Monday, July 26, 2010
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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