I just found out I have the ovaries of a 40 year old even though I'm only 30. I spoke with our infertility doctor today and my day 3 labs came back. My inhibin B and estrogen are on the low side with numbers indicating perimenopausal. However, my doctor said we are only at a "yellow light" right now as far as ovarian reserve because my FSH was normal.
I mentioned to my doctor that there isn't a history of early menopause in my family as far as I know, but he said that the abruption or heavy bleeding from it could have caused me to loose a lot of eggs. I don't know if I had heavy bleeding from the abruption. He asked if I needed a transfusion, but I didn't. I do know that I had heavy bleeding with this last miscarriage.
Maybe my ovaries are just plum tuckered out after all this drama. Apparently my uterus is up for the task even though it's been through hell and back, why aren't my stupid ovaries?! All they have to do is release eggs, it's the uterus that has to do all the heavy lifting! Come on girls, get it together! Anyway, back on topic...
Because of my hyperactive natural killer cells, he also wants to order a DQ Alpha test for both me and Kevin to test genetic similarity (which insurance also does not cover). My doctor says it's rare, but if the DNA of a couple is too similar, the woman's body will reject the pregnancy (this happens in nature to prevent things like offspring from incest and such, ya know...) I asked a few questions about what it would mean if we were too similar, and there are options, but it would complicate things a lot. We'll explore that path if we need to. It stresses me out too much to think about it right now. It would however offer an explanation for all the unexplained problems we've had (stillbirth, abruption, miscarriages).
It just seems to me like this story is getting worse and worse. I got off the phone today feeling really discouraged. I really really want more kids and to have at least one living sibling for Savannah, but I really want to be done with all this soon. Apparently, my ovaries want to be done with all this soon too. Do you hear that noise? Is that a clock ticking? Lemme go find out where that's coming from...
Tuesday, March 30, 2010
Rebirth of the seasons
Last Wednesday, March 24th was Garrett's one year birthday. I would have posted earlier about it, but I've been super busy since then. I'm still super busy. In fact, I'm always super busy. But I figured if I let more time go by it would cease to be relevant, and I would forget the emotions I was experiencing. So here I am making time.
Garrett's birthday also happens to coincide with Kevin's birthday. That makes it especially tough. I mentioned this to Kevin before his birthday to find out if he wanted to do anything to commemorate the event, but he doesn't want the sadness of the event to make others uncomfortable when they are trying to celebrate his birthday. So I decided to have my little pity party all by myself. I allowed myself time to be alone with my emotions so that I could deal with them and then have the ability to focus on Kevin without allowing the sadness of Garrett's birth to overshadow Kevin's birthday. That strategy seemed to work well.
I took some time away from everyone and looked over old pictures and videos of our little guy. I had myself a good cry and then treated myself to lunch with my husband. I had a lot of people tell me that they can't believe it's already been a year, but I keep thinking to myself, "It's only been a year?!" It seems longer to me! It seems like I'm moving in slow motion trying to reach our goal. To say we've had a lot happen in the past year is an understatement.
We're also approaching the anniversary of Garrett's death. I'm finding this to be even more difficult as things keep bringing me back to the events and emotions surrounding it. Although the circumstance of his birth is tragic, it was characterized by emotions that were not altogether sad. Certainly fear was associated with it, but there was that time of uncertainty tinged with cautious optimism because he was born alive. But his death on the other hand is only characterized by sadness.
Garrett's death was on April 7th, but the memorial service just happened to coincide with Easter Sunday. All the things that we do for Easter and in the Spring bring me back to that time. My family is coming in to celebrate Savannah's birthday which is April 2nd. They will also be here for Easter Sunday, and it seems like deja vu in a way.
This past weekend I cleaned out the little memorial garden that my parents and I made for Sierra and Garrett, and it brought back all those memories and emotions when we were creating it for them. Spring and the associated rebirth of the seasons used to be a time that reminded me of life and vitality and optimism, but it's seeming to have the opposite effect on me this year. Can I hope for a time when this change of season doesn't seem so dark?
Garrett's birthday also happens to coincide with Kevin's birthday. That makes it especially tough. I mentioned this to Kevin before his birthday to find out if he wanted to do anything to commemorate the event, but he doesn't want the sadness of the event to make others uncomfortable when they are trying to celebrate his birthday. So I decided to have my little pity party all by myself. I allowed myself time to be alone with my emotions so that I could deal with them and then have the ability to focus on Kevin without allowing the sadness of Garrett's birth to overshadow Kevin's birthday. That strategy seemed to work well.
I took some time away from everyone and looked over old pictures and videos of our little guy. I had myself a good cry and then treated myself to lunch with my husband. I had a lot of people tell me that they can't believe it's already been a year, but I keep thinking to myself, "It's only been a year?!" It seems longer to me! It seems like I'm moving in slow motion trying to reach our goal. To say we've had a lot happen in the past year is an understatement.
We're also approaching the anniversary of Garrett's death. I'm finding this to be even more difficult as things keep bringing me back to the events and emotions surrounding it. Although the circumstance of his birth is tragic, it was characterized by emotions that were not altogether sad. Certainly fear was associated with it, but there was that time of uncertainty tinged with cautious optimism because he was born alive. But his death on the other hand is only characterized by sadness.
Garrett's death was on April 7th, but the memorial service just happened to coincide with Easter Sunday. All the things that we do for Easter and in the Spring bring me back to that time. My family is coming in to celebrate Savannah's birthday which is April 2nd. They will also be here for Easter Sunday, and it seems like deja vu in a way.
This past weekend I cleaned out the little memorial garden that my parents and I made for Sierra and Garrett, and it brought back all those memories and emotions when we were creating it for them. Spring and the associated rebirth of the seasons used to be a time that reminded me of life and vitality and optimism, but it's seeming to have the opposite effect on me this year. Can I hope for a time when this change of season doesn't seem so dark?
Tuesday, March 16, 2010
Natural Killer Cells and moving on
I spoke with the RE this morning, and apparently I tested positive for hyperactive Natural Killer Cells. Based on the research I did online there is some controversy surrounding this diagnosis, but based on his school of thought he feels this is causing the early miscarriages.
The theory is that these hyperactive natural killer cells (or a type of white blood cells) are attacking the embryo. If the embryo is able to grow large enough, it can "defend" itself. So this does not explain the stillbirth or abruption. The doctor explained that there are no other tests we can do where we can find a cause for those. He assured me that I will be closely monitored during my pregnancy, but that doesn't give me much assurance considering the circumstances.
Successful pregnancies can be had with the hyperactive NKC because one can become more sensitive with repeat "exposures" hence the reason why we would be having a problem with miscarriages now when I've never had a problem before.
If we decide to continue to try naturally with no treatment, we have about a 4% chance of having a successful pregnancy. However, if we decide to do IVF with intravenous immunoglobulin (IVIG) therapy to treat the NKC, we have about a 60% chance of having a successful pregnancy. We can't do the IVIG therapy without IVF because they are supposed to give the first infusion two weeks before you're pregnant. If you don't do IVF, the timing is unpredictable.
Even though this is just one diagnosis, I feel this is a lot to take in. We've found a cause for the the early miscarriages, but it has essentially eliminated our option for trying naturally. I wanted to have the option to try naturally before or after our IVF attempt in case it didn't work.
It also hasn't given us an explanation for Sierra or Garrett. I'm apprehensive about paying for IVF with the thought in mind that we could loose the pregnancy later on. However, I'd rather have the bill and have tried and failed than not have tried at all. At least then we're not stuck with "what if's".
With all this in mind, I've decided to change my perspective on things - if only to manage my stress level surrounding all this. I've decided to move forward with the assumption that we may never have anymore children. If the expectation is set, then I can't be let down. I read on the clinic's website that the sensitivity I've developed is more the exception than the rule - usually women who have this are not able to have any children because they start off with this sensitivity. We beat the odds once, and maybe we already had our little "rainbow" baby that some couples try for years and never succeed at.
After I came to this decision, I felt instantly lighter like some weight had been lifted from my metaphorical shoulders. I know this is probably just a coping mechanism, but I know this is the right way to deal with it for me. I've allowed myself to move on and not worry and stress about it anymore.
I would like to continue to try as long as we can afford it and have the health to do so, but I'm going in with the assumption that it may not work and we may never have any more children. And if it succeeds, then we'll be pleasantly surprised. We may only end up being stuck with the bill, but at least we can say we tried, and most importantly we can be thankful for our one living healthy child.
The theory is that these hyperactive natural killer cells (or a type of white blood cells) are attacking the embryo. If the embryo is able to grow large enough, it can "defend" itself. So this does not explain the stillbirth or abruption. The doctor explained that there are no other tests we can do where we can find a cause for those. He assured me that I will be closely monitored during my pregnancy, but that doesn't give me much assurance considering the circumstances.
Successful pregnancies can be had with the hyperactive NKC because one can become more sensitive with repeat "exposures" hence the reason why we would be having a problem with miscarriages now when I've never had a problem before.
If we decide to continue to try naturally with no treatment, we have about a 4% chance of having a successful pregnancy. However, if we decide to do IVF with intravenous immunoglobulin (IVIG) therapy to treat the NKC, we have about a 60% chance of having a successful pregnancy. We can't do the IVIG therapy without IVF because they are supposed to give the first infusion two weeks before you're pregnant. If you don't do IVF, the timing is unpredictable.
Even though this is just one diagnosis, I feel this is a lot to take in. We've found a cause for the the early miscarriages, but it has essentially eliminated our option for trying naturally. I wanted to have the option to try naturally before or after our IVF attempt in case it didn't work.
It also hasn't given us an explanation for Sierra or Garrett. I'm apprehensive about paying for IVF with the thought in mind that we could loose the pregnancy later on. However, I'd rather have the bill and have tried and failed than not have tried at all. At least then we're not stuck with "what if's".
With all this in mind, I've decided to change my perspective on things - if only to manage my stress level surrounding all this. I've decided to move forward with the assumption that we may never have anymore children. If the expectation is set, then I can't be let down. I read on the clinic's website that the sensitivity I've developed is more the exception than the rule - usually women who have this are not able to have any children because they start off with this sensitivity. We beat the odds once, and maybe we already had our little "rainbow" baby that some couples try for years and never succeed at.
After I came to this decision, I felt instantly lighter like some weight had been lifted from my metaphorical shoulders. I know this is probably just a coping mechanism, but I know this is the right way to deal with it for me. I've allowed myself to move on and not worry and stress about it anymore.
I would like to continue to try as long as we can afford it and have the health to do so, but I'm going in with the assumption that it may not work and we may never have any more children. And if it succeeds, then we'll be pleasantly surprised. We may only end up being stuck with the bill, but at least we can say we tried, and most importantly we can be thankful for our one living healthy child.
Thursday, March 11, 2010
New OB consult appointment...
I had my consult appointment today with my new OB. She is in agreement with the RE that we don't want to treat my pregnancy loss history with blood thinners unless there is something to treat. She doesn't think the MTHFR mutation that I have is one that requires treatment. She said she's seen patients with similar history who want to be preventatively treated for anything that could possibly go wrong, and she commended me on my rational approach for only seeking treatment for problems I've been diagnosed with. Unfortunately, we haven't located the problem so there's nothing to treat yet...
She says all that in one breath, but she still wants me to stay on the low-dose aspirin and Folbic (super high dose folic acid). It's funny because I'm the one that mentioned those drugs to my last doctors based on things I read online. I wonder if this doctor would have even considered it if I wasn't already on it. Do you ever feel like you're your own doctor sometimes? Anyway...
I mentioned my classical c-section scar to her and the possibility of twins with IVF. She agrees that having twins will put extra stress on the scar but is not enough to prevent our IVF attempts. She outlined some of the major risks with having twins such as pre-term labor and pre-eclampsia that may require bed rest and premature birth. She would prefer that I only carry one baby at a time because a singleton is generally less risky, but there's not a whole lot of control we have over that. If we get twins with our IVF attempts, then we'll deal with it. If we only have one or none in there, then we'll deal with that too.
As long as my pap smear comes back normal (which I don't foresee a problem with that *knock on wood*), then we will receive the green light for IVF. We will then have the privilege of paying a boat-load of money for the use of technology to try to conceive the gender of our choosing.
So now we go back to the waiting game... (If I were a news broadcaster, that'd be my signature sign off...)
She says all that in one breath, but she still wants me to stay on the low-dose aspirin and Folbic (super high dose folic acid). It's funny because I'm the one that mentioned those drugs to my last doctors based on things I read online. I wonder if this doctor would have even considered it if I wasn't already on it. Do you ever feel like you're your own doctor sometimes? Anyway...
I mentioned my classical c-section scar to her and the possibility of twins with IVF. She agrees that having twins will put extra stress on the scar but is not enough to prevent our IVF attempts. She outlined some of the major risks with having twins such as pre-term labor and pre-eclampsia that may require bed rest and premature birth. She would prefer that I only carry one baby at a time because a singleton is generally less risky, but there's not a whole lot of control we have over that. If we get twins with our IVF attempts, then we'll deal with it. If we only have one or none in there, then we'll deal with that too.
As long as my pap smear comes back normal (which I don't foresee a problem with that *knock on wood*), then we will receive the green light for IVF. We will then have the privilege of paying a boat-load of money for the use of technology to try to conceive the gender of our choosing.
So now we go back to the waiting game... (If I were a news broadcaster, that'd be my signature sign off...)
Wednesday, March 10, 2010
More unanswered questions...
Just got back from the doctor's office. They drew blood to test my natural killer cells (NKC) and performed the hysteroscopy.
We should get the results back from the blood test in 7-10 days.
The hysteroscopy is a procedure where a telescope is inserted into the uterus via the cervix so that the interior of the uterus can be examined. Everything looks good. The doctor commented that he can't even see my c-section scars. That's good news, but somewhat anticlimactic. If scar tissue were present, it could have offered an explanation regarding the early miscarriages. It could have also been easily remedied.
Don't get me wrong, I'm thankful I have a healthy uterus, but we're still left with unanswered questions which is incredibly frustrating. Now we wait for the results of the NKC blood test...
In the meantime, I have a consult appointment tomorrow with my new OB/GYN. We will see if she will sign off that I'm healthy enough for IVF with no increased risk to my health/life. I'm concerned I may not get the go ahead because I'm not sure if the classical c-section I have could put me at increased risk of uterine rupture with twins. I'm anxious about what this new OB says because it could eliminate IVF as an option for us, but I'm trying to stay calm though until we know the answer.
I also need to get a pap smear... fun stuff!
We should get the results back from the blood test in 7-10 days.
The hysteroscopy is a procedure where a telescope is inserted into the uterus via the cervix so that the interior of the uterus can be examined. Everything looks good. The doctor commented that he can't even see my c-section scars. That's good news, but somewhat anticlimactic. If scar tissue were present, it could have offered an explanation regarding the early miscarriages. It could have also been easily remedied.
Don't get me wrong, I'm thankful I have a healthy uterus, but we're still left with unanswered questions which is incredibly frustrating. Now we wait for the results of the NKC blood test...
In the meantime, I have a consult appointment tomorrow with my new OB/GYN. We will see if she will sign off that I'm healthy enough for IVF with no increased risk to my health/life. I'm concerned I may not get the go ahead because I'm not sure if the classical c-section I have could put me at increased risk of uterine rupture with twins. I'm anxious about what this new OB says because it could eliminate IVF as an option for us, but I'm trying to stay calm though until we know the answer.
I also need to get a pap smear... fun stuff!
Thursday, March 4, 2010
Label change, aisle three...
I've been walking around the last couple days since our appointment with the RE on Tuesday with a very odd feeling. I can't quite place it. This whole experience seems really surreal to me.
We've been talking about IVF and pricing and the steps required to get to that point, and we seem to be going full steam ahead with tests and procedures and new doctors, but it's giving me some anxiety to think that we're going to be a proud owner of a loan in the same range of a decent car whether we have a baby at the end of this or not! I had a hard time buying a $400 dresser, and there is a lot more at stake with this transaction! It's taking me a little bit to adjust to being out of my comfort zone finance wise.
I also never thought I'd be a woman who would need to meet with an infertility specialist. We don't exactly need IVF to conceive, but obviously something is wrong (not sure what yet) where we need the expertise from this field. I was talking with the financial counselor at the clinic to get pricing and such, and she told me that once you meet with an RE, you pretty much get the label of "infertility".
I guess that's what's been bothering me recently. I almost feel as if I'm grieving for my "fertile status". I've always associated infertility with IVF for reasons that go without saying. I don't exactly need IVF to conceive, but I do need it for my mental and physical well being. In other words I need it to keep my sanity and spare my fractured back so we can limit the number of future pregnancies we have for the amount of children we want.
Before we had Savannah when we first started talking about having kids, I had that fear in the back of my mind, "what if we have problems". But we didn't have problems (at first), and I thought we were going to be safe from all the horrors of struggling with infertility. Then we had our first loss, and then another, and then we lost two more pregnancies early on. I still felt I could hang onto my "fertile status" because we could get pregnant so easily. I felt and still feel like there's something wrong with me, but I still knew I was fertile. Now that perception is changing within myself. I know it's just a label, and I'm not one that likes labels generally speaking, but these things do help us organize things better in our minds. So now I feel that I've finally made the change from fertile to infertile, and it's kinda sad and weird.
Update: I forgot to also mention that I have a general sense of anticipation and excitement that hopefully this process will end with a living baby in our arms. It seems that this strange feeling that I've had the last couple days is probably a combination of lots of different feelings and thoughts swirling around in my head from eagerness, anxiety, hopefulness, and even grief.
We've been talking about IVF and pricing and the steps required to get to that point, and we seem to be going full steam ahead with tests and procedures and new doctors, but it's giving me some anxiety to think that we're going to be a proud owner of a loan in the same range of a decent car whether we have a baby at the end of this or not! I had a hard time buying a $400 dresser, and there is a lot more at stake with this transaction! It's taking me a little bit to adjust to being out of my comfort zone finance wise.
I also never thought I'd be a woman who would need to meet with an infertility specialist. We don't exactly need IVF to conceive, but obviously something is wrong (not sure what yet) where we need the expertise from this field. I was talking with the financial counselor at the clinic to get pricing and such, and she told me that once you meet with an RE, you pretty much get the label of "infertility".
I guess that's what's been bothering me recently. I almost feel as if I'm grieving for my "fertile status". I've always associated infertility with IVF for reasons that go without saying. I don't exactly need IVF to conceive, but I do need it for my mental and physical well being. In other words I need it to keep my sanity and spare my fractured back so we can limit the number of future pregnancies we have for the amount of children we want.
Before we had Savannah when we first started talking about having kids, I had that fear in the back of my mind, "what if we have problems". But we didn't have problems (at first), and I thought we were going to be safe from all the horrors of struggling with infertility. Then we had our first loss, and then another, and then we lost two more pregnancies early on. I still felt I could hang onto my "fertile status" because we could get pregnant so easily. I felt and still feel like there's something wrong with me, but I still knew I was fertile. Now that perception is changing within myself. I know it's just a label, and I'm not one that likes labels generally speaking, but these things do help us organize things better in our minds. So now I feel that I've finally made the change from fertile to infertile, and it's kinda sad and weird.
Update: I forgot to also mention that I have a general sense of anticipation and excitement that hopefully this process will end with a living baby in our arms. It seems that this strange feeling that I've had the last couple days is probably a combination of lots of different feelings and thoughts swirling around in my head from eagerness, anxiety, hopefulness, and even grief.
Wednesday, March 3, 2010
Back at square one with unanswered questions
We met with the infertility specialist yesterday (also known as an RE or reproductive endocrinologist). I'm really glad we decided to do this; the only regret I have is that I didn't do it earlier.
We were given a lot of information at our consult appointment.
1. My current doctors' diagnosis and treatment plan is wrong for my situation. The MTHFR mutation that I have is heterozygous, and it is on the "benign" gene. The problems I'm having are not related to this mutation. Additionally, if I did have the more dangerous form of this mutation, it is not typically treated with blood thinners. You treat it with 4mg of Folgar which lowers the homocysteine levels. He basically was irritated with my current doctors because they are treating my "history" rather than finding the cause of our problems. A lot of what he was telling me I had already read online. But there is so much contradictory information out there, you really don't have any option but to trust your doctor.
It goes without saying that I will be finding a new OB and perinatologist. In fact, I called this morning to get a referral, and the doctor emailed me himself with his recommendation less than an hour after I called! I was really impressed with how fast he returned my message.
2. We can mostly rule out various factors that cause repeat pregnancy loss, things like genetics (both me and Kevin have already been tested for this), hormonal (I don't exhibit any symptoms of hormonal problems like menstruation problems), environmental factors (I don't smoke), and probably low ovarian reserve since I'm not yet at an advanced maternal age. That leaves a few categories that we can't definitively rule out: uterine lining, immune, and bad luck.
3. He would like to run some additional tests to either find a cause or rule out other factors.
I have an appointment on Wednesday for a procedure to inspect my uterine lining. The doctor thinks the last c-section I had could have caused some scaring which is now causing the early miscarriages. A vertical incision into the uterus especially under emergency conditions can increase your risk for scarring. Apparently, this is easily remedied by removing the scar tissue.
He is also ordering a test (that insurance doesn't cover) that screens for natural killer cells that are too active. Natural killer cells are basically white blood cells that will typically attack anything foreign that enters your body. However if they are too active and don't respond properly to the father's genetic code, they will also attack the embryo causing miscarriage or pregnancy loss later. I'm not sure at this time how this is treated. Probably by lowing your immune system somehow, but that's just a guess.
There is also another immune response that can cause repeat pregnancy loss. This one works by antiphospholipid antibodies reacting to the placenta and creating clots around it thus compromising the pregnancy. These antibodies are present with other immune disorders such as lupus and rheumatoid arthritis, but their presence doesn't mean you have those disorders. This is treated with small amounts of blood thinners to help prevent clots forming. He did not order this test at this time because insurance doesn't cover this one either, but also because we were already screened for this after the first loss. However, the test that was done is not sensitive enough to detect any trace levels of this. However, he thinks that if I did have this, it probably would have shown up with their tests. We will probably go back and do this one if we don't have any answers from the other two tests.
The doctor did say that sometimes you can have a successful pregnancy at first with immune issues because it is like being exposed to an allergen - it's not the first exposure that's the worst, but the severity increases after each exposure.
I have an appointment on Wednesday for a procedure to inspect my uterine lining. The doctor thinks the last c-section I had could have caused some scaring which is now causing the early miscarriages. A vertical incision into the uterus especially under emergency conditions can increase your risk for scarring. Apparently, this is easily remedied by removing the scar tissue.
He is also ordering a test (that insurance doesn't cover) that screens for natural killer cells that are too active. Natural killer cells are basically white blood cells that will typically attack anything foreign that enters your body. However if they are too active and don't respond properly to the father's genetic code, they will also attack the embryo causing miscarriage or pregnancy loss later. I'm not sure at this time how this is treated. Probably by lowing your immune system somehow, but that's just a guess.
There is also another immune response that can cause repeat pregnancy loss. This one works by antiphospholipid antibodies reacting to the placenta and creating clots around it thus compromising the pregnancy. These antibodies are present with other immune disorders such as lupus and rheumatoid arthritis, but their presence doesn't mean you have those disorders. This is treated with small amounts of blood thinners to help prevent clots forming. He did not order this test at this time because insurance doesn't cover this one either, but also because we were already screened for this after the first loss. However, the test that was done is not sensitive enough to detect any trace levels of this. However, he thinks that if I did have this, it probably would have shown up with their tests. We will probably go back and do this one if we don't have any answers from the other two tests.
The doctor did say that sometimes you can have a successful pregnancy at first with immune issues because it is like being exposed to an allergen - it's not the first exposure that's the worst, but the severity increases after each exposure.
4. I found out this morning that we have zero coverage for infertility with our current insurance plan. Once a diagnosis is made, we are on our own. I am having a conference call tomorrow morning with the clinic's financial advisor to see how much IVF will cost and if we can even afford it at this time.
5. If we choose to do the IVF, I will also need a perinatologist sign off that I am not at increased risk for carrying twins. This clinic experiences a 25% chance of twins with IVF, and they do not want both babies or the mother's life to be in jeopardy.
5. If we choose to do the IVF, I will also need a perinatologist sign off that I am not at increased risk for carrying twins. This clinic experiences a 25% chance of twins with IVF, and they do not want both babies or the mother's life to be in jeopardy.
An encouraging bit of news is that this particular clinic has a 60% success rate for IVF, and they have the highest success rate in the Dallas area. I just hope we can get to the point that we have the means to be able to afford it! If anything, I hope that we can finally get some answers and at least have a treatment plan if we decide to try naturally. Now back to the waiting game...
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