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.
Wednesday, September 8, 2010
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.
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