Wednesday, July 10, 2013
Infertility won today
Feeling a little discouraged after our appointment. Although he did say he would work with us on doing IUIs after LIT, he certainly didn't agree with the diagnosis but that wasn't what upset me. When we explained our 3 IVF cycles, he is quite certain that our problem is embryo quality. Even though Cincinnati never told us our quality was bad, it was concerning to the doctor we spoke with today that out of 3 cycles we only had 1 frozen embryo. He said out of that many embryos we should of had more make it to freeze. The saddest part about this is I believe that too. It always bothered me that we never had any to freeze but it never seemed to bother the group in Cincinnati. Now I'm not so sure we're ever gonna have our own genetic child. Infertility won today.
Tuesday, July 9, 2013
Back to an old friend!
Please say a prayer for us tomorrow. We've got a doctor's appointment with our RE in Knoxville (one we used before moving to IVF) to discuss whether or not he will be on board with these immune treatments once I get pregnant again. If not, we may have to go to a brand new RE in Atlanta (who states on their website that they are proponents in reproductive immunology) and we really don't want to switch doctors again. The Cincinnati group was great but there is no reason to go there since we will no longer be using IVF. They also weren't thrilled about immunology.
Sunday, June 30, 2013
Crossing the Border!
We finally have a plan! We had our phone consultation with one of the doctors at the Alan Beer Center in CA on June 12th. This is basically what is wrong with us:
A crossmatch was done to determine how well I responded to Brad. My result on this test was 0.52 and they like to see 50 or above for good implantation and a healthy pregnancy. I am not producing the necessary antibodies needed to protect the baby from miscarriage or stimulate the placenta. The solution (hopefully) to this issue is lymphocyte immunization therapy (LIT). I have explained this before but I will again just in case you missed it the last time.
LIT is when they draw blood from your husband and the lymphocytes are extracted and made into a serum. Then the serum is injected into the wife's forearm just under the skin. After 3-4 weeks the process is repeated. It's not that expensive and seems to raise pregnancy rates when this DNA thing is a problem. Unfortunately it's not available in the United States. In January 2002, the FDA suspended the use of LIT in the US until they can establish its effectiveness. The only way to get this treatment is to go out of the country and Mexico is the closest place. The reproductive immunologist in CA used to perform LIT before it was suspended by the FDA with good results. He even said since the suspension their pregnancy rates have gone down because not everyone is willing to travel to Mexico to get this done. We are willing!!!!So now we have passports and we are just waiting on our infectious disease panel results to book our first trip to Mexico. Yes, we are crazy people. We just want a baby, our own genetic baby if possible.
I have a few other issues but they aren't as severe as the one above. My antiphospholipid antibodies test(APA) test was positive, autoantibody to nuclear components test was borderline positive. My T regulatory cell assay demonstrated low T regulatory cell level which are implicated in miscarriage and implantation failure. I had elevated NK killing capacity and had three thrombophilia positives: MTHFR A Heterozygous, PAI-1 homozygous, Factor XIII heterozygous. I already knew about my blood clotting factors but I didn't start my Lovenox injections early enough during my last pregnancy.
So here's the plan:
Take the first trip to Mexico as soon as we receive infectious disease results to do the first LIT injection.
3-4 weeks later, return to Mexico for the subsequent injection.
3-4 weeks later, recheck LAD (the test that I scored a 0.52 on) and NK cells.
Take folic acid for MTHFR, baby aspirin, vitamins D and E, prenatal vitamins.
If cleared for a conception cycle, intralipid infusions for elevated NK cells if needed.
If intralipids are still elevated, begin IVIg infusions.
Begin Lovenox injections on cycle day 6.
Take progesterone suppositories.
*I have an appointment this month with a local RE to see if he is on board with these treatments. If not, we will have to contact someone else to work with us on these issues before we can start with the plan. Not everyone is a believer in reproductive immunology yet.
If we get pregnant, we will have a CBC with platelet count every month while on Lovenox, retest APA, retest ANA, retest TH1:TH2 intracellular cytokine assay and retest our T regulatory cell assay. If T regulatory cell assay is abnormal, they will continue to test through the first trimester. NK assay testing will be repeated every 3 weeks starting with positive pregnancy testing, then monthly after the first trimester. A Beta should be drawn every 3 days until a heartbeat is established. Progesterone level should be preformed at the time of a positive pregnancy test and weekly through first trimester. Test TSH and Free T4 (thyroid tests since I have a history of thyroiditis) with a positive pregnancy test and then as needed.
It has taken us a while to get all these answers but needless to say, everyone is going to keep a close watch on me before and after a pregnancy. That is such a comforting feeling. I loved reading the part about heartbeats and first trimesters. I hope and pray we get to those stages and beyond. We covet your prayers as we begin our next steps on this journey we call infertility. I pray for you girls daily.
A crossmatch was done to determine how well I responded to Brad. My result on this test was 0.52 and they like to see 50 or above for good implantation and a healthy pregnancy. I am not producing the necessary antibodies needed to protect the baby from miscarriage or stimulate the placenta. The solution (hopefully) to this issue is lymphocyte immunization therapy (LIT). I have explained this before but I will again just in case you missed it the last time.
LIT is when they draw blood from your husband and the lymphocytes are extracted and made into a serum. Then the serum is injected into the wife's forearm just under the skin. After 3-4 weeks the process is repeated. It's not that expensive and seems to raise pregnancy rates when this DNA thing is a problem. Unfortunately it's not available in the United States. In January 2002, the FDA suspended the use of LIT in the US until they can establish its effectiveness. The only way to get this treatment is to go out of the country and Mexico is the closest place. The reproductive immunologist in CA used to perform LIT before it was suspended by the FDA with good results. He even said since the suspension their pregnancy rates have gone down because not everyone is willing to travel to Mexico to get this done. We are willing!!!!So now we have passports and we are just waiting on our infectious disease panel results to book our first trip to Mexico. Yes, we are crazy people. We just want a baby, our own genetic baby if possible.
I have a few other issues but they aren't as severe as the one above. My antiphospholipid antibodies test(APA) test was positive, autoantibody to nuclear components test was borderline positive. My T regulatory cell assay demonstrated low T regulatory cell level which are implicated in miscarriage and implantation failure. I had elevated NK killing capacity and had three thrombophilia positives: MTHFR A Heterozygous, PAI-1 homozygous, Factor XIII heterozygous. I already knew about my blood clotting factors but I didn't start my Lovenox injections early enough during my last pregnancy.
So here's the plan:
Take the first trip to Mexico as soon as we receive infectious disease results to do the first LIT injection.
3-4 weeks later, return to Mexico for the subsequent injection.
3-4 weeks later, recheck LAD (the test that I scored a 0.52 on) and NK cells.
Take folic acid for MTHFR, baby aspirin, vitamins D and E, prenatal vitamins.
If cleared for a conception cycle, intralipid infusions for elevated NK cells if needed.
If intralipids are still elevated, begin IVIg infusions.
Begin Lovenox injections on cycle day 6.
Take progesterone suppositories.
*I have an appointment this month with a local RE to see if he is on board with these treatments. If not, we will have to contact someone else to work with us on these issues before we can start with the plan. Not everyone is a believer in reproductive immunology yet.
If we get pregnant, we will have a CBC with platelet count every month while on Lovenox, retest APA, retest ANA, retest TH1:TH2 intracellular cytokine assay and retest our T regulatory cell assay. If T regulatory cell assay is abnormal, they will continue to test through the first trimester. NK assay testing will be repeated every 3 weeks starting with positive pregnancy testing, then monthly after the first trimester. A Beta should be drawn every 3 days until a heartbeat is established. Progesterone level should be preformed at the time of a positive pregnancy test and weekly through first trimester. Test TSH and Free T4 (thyroid tests since I have a history of thyroiditis) with a positive pregnancy test and then as needed.
It has taken us a while to get all these answers but needless to say, everyone is going to keep a close watch on me before and after a pregnancy. That is such a comforting feeling. I loved reading the part about heartbeats and first trimesters. I hope and pray we get to those stages and beyond. We covet your prayers as we begin our next steps on this journey we call infertility. I pray for you girls daily.
Sunday, May 12, 2013
Mother's Day
How do you deal with this dreaded holiday as an infertile? My husband and I decided years ago that we would not attend church on Mother's Day or Father's Day. Here's a sample of what we probably missed this morning: "Let's have all the mothers stand up for a flower. How about the mother with the most children. The oldest mother. The youngest mother. The mother with the youngest child. The pregnant mother.....blah, blah, blah" Funny how they never mention the mothers who lost their children in the womb or soon after birth or mothers who haven't ever conceived but are mothers at heart. Once again infertility and pregnancy loss remains taboo.
Mother's Day is always filled with baby dedications at church so that's an added bonus! Yuck. I think it's beautiful that families are standing up stating they are dedicating their babies to the Lord, to train them up in the way they should go. I just don't want to watch it. So instead we stay home and watch golf, The Players Championship. Surely you're safe watching golf. Nope. Every 5 minutes they are showing mothers with their children (mostly babies) and plastering Happy Mother's Day all over the screen. I guess the only way to get away from it all would be to sit in your living room in silence but even that wouldn't work. The yearning of motherhood is always there and on Mother's Day it's magnified times 100.
But then I start to feel guilty about this day. I have a mother, a wonderful mother. There will be a day that she will be gone and I will regret throwing my pity party about not being a mother myself. It's very hard to navigate my feelings. I am so thankful for my mother. She is the reason I long to be one myself. She is loving, selfless and emulates every quality that I want for myself as a mother. I will go visit her in a couple of hours and instead of thinking of herself as she should on this day, she will think of me and how hard this day always is. And that is the reason I want to be a mother. To put my children ahead of myself the way my mother does. To know what it feels like to have a mother's love for her child.
Maybe next year I'll have a Happy Mother's Day.....I've been saying that for 6 years now.
Mother's Day is always filled with baby dedications at church so that's an added bonus! Yuck. I think it's beautiful that families are standing up stating they are dedicating their babies to the Lord, to train them up in the way they should go. I just don't want to watch it. So instead we stay home and watch golf, The Players Championship. Surely you're safe watching golf. Nope. Every 5 minutes they are showing mothers with their children (mostly babies) and plastering Happy Mother's Day all over the screen. I guess the only way to get away from it all would be to sit in your living room in silence but even that wouldn't work. The yearning of motherhood is always there and on Mother's Day it's magnified times 100.
But then I start to feel guilty about this day. I have a mother, a wonderful mother. There will be a day that she will be gone and I will regret throwing my pity party about not being a mother myself. It's very hard to navigate my feelings. I am so thankful for my mother. She is the reason I long to be one myself. She is loving, selfless and emulates every quality that I want for myself as a mother. I will go visit her in a couple of hours and instead of thinking of herself as she should on this day, she will think of me and how hard this day always is. And that is the reason I want to be a mother. To put my children ahead of myself the way my mother does. To know what it feels like to have a mother's love for her child.
Maybe next year I'll have a Happy Mother's Day.....I've been saying that for 6 years now.
Wednesday, April 3, 2013
35
Today is my 35th birthday. I have written before about reasons this day is so hard for me so if you already know about them, feel free to skip this post.
First of all, I'm 35. I don't mind aging. If I was a mother, 35 would just be a number to me like any other. But I do mind turning 35 without children. Everyone can say, "Oh you're still so young!" but they say this when they already have 3 kids by this age. I just never thought I would be here at 35. I always imagined myself with at least 2 if not 3 children by now. These things are so hard to understand.
Not only am I feeling sad about being 35 without becoming a mother of living children yet, I'M 35!!!! If you are in the infertility community, then you know what this number means. You know that once you hit this birthday, you are no longer considered "young." You are put into the advanced maternal age catergory at the clinics. Now I'm not suggesting that at 35 your eggs are finished but it definitely puts you at greater risk. After starting treatments 5 years ago, one of my goals was to be pregnant before this dreaded category. But once again I am reminded that God is in control, not me. I hate that. ;)
The worst part about my birthday is 6 years ago today I found out I was pregnant for the first time. I was ready to start a family about a year prior to this date so when Brad finally agreed I was ecstatic! I stopped taking my birth control pills right in the middle of the pack (which I why I actually ovulated on time like a normal human being). When it was time for me to start, I didn't. Surely we didn't get pregnant the first month we tried. On the morning of my 29th birthday, I decided to take a test. I don't remember why I had hpts at home but I guess I was prepared, just in case. You can imagine the shock on my husband's face when I showed him that positive test. We were both in disbelief. Could it really be this easy?
I called my sister-in-law, Michelle, and she brought me several more tests to school early before my students arrived. She brought my niece along and when she saw the test she told her, "E's going to have a baby!" I was so excited! I couldn't wait to tell the rest of my family.
Because it was my birthday, we decided to tell my parents and Brad's parents and sister at a birthday dinner at our house for me. I know what you're thinking. Why would we tell people so soon? What if something happens and it doesn't work out? Back in the days before pregnancy loss, Brad and I really felt that when people got pregnant, they had a baby. Sure we knew sometimes it didn't work out but that wasn't going to happen to us.
After supper and cake, I opened my presents. I saved Brad's for last. He got me three onesies with some prenatal vitamins. Everyone just sat there for a few seconds, not really understanding what that meant. Suddenly Brad's sister, Julie, screams out, "She's pregnant!" It was one of the happiest moments of our lives.
Sadly, the happiness didn't last. We said goodbye to our first son, Grant Alexander Davis, on April 11 before we could even make it to an ultrasound. That day we also lost our innocence about what really happens when someone gets pregnant. We have had two more pregnancies since that first one. We still tell the day we find out but we no longer believe pregnancy ends with baby. I'm not really sure if it ever will for us. I know God will allow us to be parents one day but it may not be with a pregnancy of my own.
My birthday marks 6 years of this journey. We would try for a year on our own with no success. (Why isn't it happening? It was so simple the first time???) We tried rounds of Fremara, no success. Finally a pregnancy with a Clomid IUI. We lose Caleb Bradley after hearing a slow heartbeat several times. Four more years of 10 Clomid/Injectable IUIs and 3 IVFs later we get pregnant with Allyson Paige only to lose her as early as we did Grant. I think you can see why this birthday signifies the beginning of a lot of heartache for us both.
Although it is a sad day, I still have hope. I spent the first two days of my spring break getting blood work done to send to the reproductive immunologist in California. We had almost everything already done with our consultant so there were just a few tests left to do. Hopefully, they can figure out the mystery of me and why my body keeps attacking my embryos, some before they can even implant. Hopefully April 3, 2014 will actually be a happy birthday for me like it was 6 years ago. I still have faith that He will turn my mourning into dancing....In His time.
"I still believe in Your faithfulness. I still believe in Your truth. I still believe in Your Holy Word. Even when I don't see, I still believe." -Jeremy Camp
First of all, I'm 35. I don't mind aging. If I was a mother, 35 would just be a number to me like any other. But I do mind turning 35 without children. Everyone can say, "Oh you're still so young!" but they say this when they already have 3 kids by this age. I just never thought I would be here at 35. I always imagined myself with at least 2 if not 3 children by now. These things are so hard to understand.
Not only am I feeling sad about being 35 without becoming a mother of living children yet, I'M 35!!!! If you are in the infertility community, then you know what this number means. You know that once you hit this birthday, you are no longer considered "young." You are put into the advanced maternal age catergory at the clinics. Now I'm not suggesting that at 35 your eggs are finished but it definitely puts you at greater risk. After starting treatments 5 years ago, one of my goals was to be pregnant before this dreaded category. But once again I am reminded that God is in control, not me. I hate that. ;)
The worst part about my birthday is 6 years ago today I found out I was pregnant for the first time. I was ready to start a family about a year prior to this date so when Brad finally agreed I was ecstatic! I stopped taking my birth control pills right in the middle of the pack (which I why I actually ovulated on time like a normal human being). When it was time for me to start, I didn't. Surely we didn't get pregnant the first month we tried. On the morning of my 29th birthday, I decided to take a test. I don't remember why I had hpts at home but I guess I was prepared, just in case. You can imagine the shock on my husband's face when I showed him that positive test. We were both in disbelief. Could it really be this easy?
I called my sister-in-law, Michelle, and she brought me several more tests to school early before my students arrived. She brought my niece along and when she saw the test she told her, "E's going to have a baby!" I was so excited! I couldn't wait to tell the rest of my family.
Because it was my birthday, we decided to tell my parents and Brad's parents and sister at a birthday dinner at our house for me. I know what you're thinking. Why would we tell people so soon? What if something happens and it doesn't work out? Back in the days before pregnancy loss, Brad and I really felt that when people got pregnant, they had a baby. Sure we knew sometimes it didn't work out but that wasn't going to happen to us.
After supper and cake, I opened my presents. I saved Brad's for last. He got me three onesies with some prenatal vitamins. Everyone just sat there for a few seconds, not really understanding what that meant. Suddenly Brad's sister, Julie, screams out, "She's pregnant!" It was one of the happiest moments of our lives.
Sadly, the happiness didn't last. We said goodbye to our first son, Grant Alexander Davis, on April 11 before we could even make it to an ultrasound. That day we also lost our innocence about what really happens when someone gets pregnant. We have had two more pregnancies since that first one. We still tell the day we find out but we no longer believe pregnancy ends with baby. I'm not really sure if it ever will for us. I know God will allow us to be parents one day but it may not be with a pregnancy of my own.
My birthday marks 6 years of this journey. We would try for a year on our own with no success. (Why isn't it happening? It was so simple the first time???) We tried rounds of Fremara, no success. Finally a pregnancy with a Clomid IUI. We lose Caleb Bradley after hearing a slow heartbeat several times. Four more years of 10 Clomid/Injectable IUIs and 3 IVFs later we get pregnant with Allyson Paige only to lose her as early as we did Grant. I think you can see why this birthday signifies the beginning of a lot of heartache for us both.
Although it is a sad day, I still have hope. I spent the first two days of my spring break getting blood work done to send to the reproductive immunologist in California. We had almost everything already done with our consultant so there were just a few tests left to do. Hopefully, they can figure out the mystery of me and why my body keeps attacking my embryos, some before they can even implant. Hopefully April 3, 2014 will actually be a happy birthday for me like it was 6 years ago. I still have faith that He will turn my mourning into dancing....In His time.
"I still believe in Your faithfulness. I still believe in Your truth. I still believe in Your Holy Word. Even when I don't see, I still believe." -Jeremy Camp
Monday, February 18, 2013
The Next Step in This Long Process!
Well we are finally there! All the test results are back. My recent thyroid tests came back normal so the endocrinologist is thinking thyroiditis yet again. He said he will keep a close watch on it and if I were to become pregnant and my thyroid problems rear their ugly heads again, there are ways to fix them safely. So with that we move on!
I filled out all of the online paperwork for the reproductive immunologist out of California, The Alan E. Beer Center. Our consultant gave us three options for immunology but recommended this center due to the nature of my issues. She also said that they are the most aggressive and that certainly appealed to us at this point in our journey. As soon as all of my records arrive, they should be contacting us to set up the first consultation about what the plan will be. I pray these steps are the ones that will lead us to our very first take-home baby. I am willing to do whatever it takes like most of you.
I filled out all of the online paperwork for the reproductive immunologist out of California, The Alan E. Beer Center. Our consultant gave us three options for immunology but recommended this center due to the nature of my issues. She also said that they are the most aggressive and that certainly appealed to us at this point in our journey. As soon as all of my records arrive, they should be contacting us to set up the first consultation about what the plan will be. I pray these steps are the ones that will lead us to our very first take-home baby. I am willing to do whatever it takes like most of you.
Saturday, January 12, 2013
Answers After Almost 6 Years
I'm back finally! Sorry it's been so long since my last post but the truth is there really wasn't a whole lot to tell. For those of you who didn't already know, we have been working with Karen Pace. She is an reproductive immunologist counselor (not doctor). She will tell you which autoimmune tests to have and interpret them for you. She will them recommend a treatment plan for you and get you set up with an actual reproductive immunologist who will work with you in conjunction with your RE. She is also available for you throughout the whole process, even up until delivery should you get pregnant with the treatments.
We started working with Karen in October. There were tons of blood work to get done at various places for various things so it has taken us this long to get it all done with the results. We had our 3 hour Skype session with Karen Thursday night. Basically she knows exactly why we are experiencing infertility and why we are miscarrying!!!!!! After all these years and 3 losses, no one had ever said those words to me. I felt like screaming because I couldn't believe we could figure this whole thing out from blood tests all along but I also felt like screaming for joy. Guess I should stick with joy. :)
So here's the deal. First of all I have clotting problems which I found out about after my second miscarriage in 2008. Now they actually found one more that can be treated with a high dose of folic acid. We already knew about my clotting but what I didn't do with pregnancy #3 was take Lovenox appropriately. I took it the day I found out I was pregnant because that was the recommendation I was given. Sadly, I should have started my blood thinning shots before trying to conceive. This helps with clotting during implantation. I also have abnormalities with my antiphospholipid antibodies (APA) which is treated with Lovenox and baby aspirin as well. Oh and my thyroid is acting crazy so I have to go back to the regular endocrinologist to get that checked out. I had thyroiditis in 2009 so my guess is I'm having another flare up. The good news is that all of these issues are an easy fix. The rest of my abnormalities are a little more complex.
I also have elevated natural killer cells. We all have NK cells in our bodies to protect us from disease and infections. When they are elevated, they sense the embryo as a foreign object that needs to be destroyed. This can cause very early miscarriages but also can even prevent your embryo from ever implanting. The recommended treatment for this problem (in my case) is IVIG. This treatment is when a home health care nurse comes to your house and hooks you up to an IV with antibodies for at least 3 hours. That part doesn't bother me because at this point I would do absolutely ANYTHING for my baby but it is very expensive. You must do one prior to conception and one when you get pregnant for sure. After that they will test your blood to see how it's working then schedule the sessions as needed. Karen said some girls need only a few while others need it once a month throughout their entire pregnancy. There are some other options if we don't want to spend so much such as intralipids. Have any of you tried intralipids or IVIG? I would love to know about your experiences so we can make a decision. The part that worries me is that we will spend money on the intralipids and it won't work and we will have to do IVIG anyway. We aren't really sure what to do about this.
The last problem I have is a strange one! Apparently, Brad and I have genetically similar DNA. Gross. I promise we aren't cousins even though we are from Tennessee! Anyway, in the beginning of the conception process, the mother's body must recognize her pregnancy as being foreign in order for her body to stimulate the necessary immune reactions to sustain it. When a couple's make-up has similar DNA, the mother does not produce the required antibodies and the pregnancy either never implants or you miscarry early. Sounds about like me doesn't it? I am not producing the anti-paternal lymphocyte antibodies required to protect my babies. The treatment for this is Lymphcyte Immune Therapy (LIT).
LIT is when they draw blood from your husband and the lymphocytes are extracted and made into a serum. Then the serum is injected into the wife's forearm just under the skin. After 3 weeks the process is repeated. It's not that expensive and seems to raise pregnancy rates when this DNA thing is a problem. BUT guess what? It's not available in the United States. In January 2002, the FDA suspended the use of LIT in the US until they can establish its effectiveness. The only way to get this treatment is to go out of the country and Mexico is the closest place. The immunologist in CA used to perform LIT before it was suspended by the FDA with good results. If Brad and I want to have our own genetic child, then it appears it's off to Mexico (at least twice) to do LIT. If any of you have done this treatment, please share!!!
So there you have it. Answers. Answers after almost 6 years of pain. Answers after 3 miscarriages of babies who did not survive because of my body. Although I hate my stupid defective body, I did not cause these problems. My issues are medical. It wasn't due to my diet, because I wasn't relaxed enough or because I did something or didn't do something. I didn't cause my miscarriages because I didn't eat well enough or because I lifted something I shouldn't. We will try these treatments and they may or may not work, but that's OK. It's nice knowing that it's really not my fault. Thank You Jesus for providing us with answers. I will keep you updated!
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