Thursday, December 12, 2013
Tuesday, December 10, 2013
It's almost time
Pregnant or not? I don't know and it's driving me crazy. Last week was awful of course because it was too early to test so you just live in ignorance. But now it's almost time. It's almost time to poas and I'm scared to do it. If I do it too early then it might be negative even if it's going to be positive. But I can't wait too late because I have autoimmune issues that cause me problems in early pregnancy. If I get a positive test then I will need to immediately get my beta so I can get my immune tests drawn again to see if my numbers have climbed due to the embryo implanting. The girls at Coram aren't going to like me very much if I call them again to schedule an infusion that I may or may not need. I've had to cancel two so far; one because I didn't get pregnant last cycle but the other because my numbers were super good!
The truth is I will probably poas Thursday morning. That way I can go get my beta Friday morning and work on my immune tests for the following Monday. Monday will be 14dpIUI and it may take a day or two to get the results. Hopefully that won't be too late to save the baby if my body wants to destroy it. The trick is getting an infusion appointment quickly. Part of me wants to go ahead and just do one again but that's a lot of money to spend if my numbers are fine.
Be ready to see some pee sticks at the end of this week! Prayers are appreciated as always.
The truth is I will probably poas Thursday morning. That way I can go get my beta Friday morning and work on my immune tests for the following Monday. Monday will be 14dpIUI and it may take a day or two to get the results. Hopefully that won't be too late to save the baby if my body wants to destroy it. The trick is getting an infusion appointment quickly. Part of me wants to go ahead and just do one again but that's a lot of money to spend if my numbers are fine.
Be ready to see some pee sticks at the end of this week! Prayers are appreciated as always.
Sunday, December 1, 2013
Double IUI
Thanksgiving morning was spent at my RE's office getting an ultrasound and then we were sent over to the hospital for an E2 draw. He said it looked like I had 4 follicles that would be ready soon. He told us he would either call us that night or Friday morning to let us know what the next steps were. He asked us if we had a trigger shot at home and we told him yes.
So Thanksgiving came and went with no call. I didn't think to ask him if I still needed to stay on my 150IU of Follistim so I just took it. I figured if he wanted me to stop he would've said something. So he calls Friday around 12:00 to let me know we will be doing the IUI in the morning. I said, "But what about triggering?" He said, "Didn't you trigger last night?" and I told him no. He said he told me to trigger if I didn't hear from him last night. I never heard him say that and neither did Brad. So now I'm freaking out thinking I have screwed up this entire thing. The NK cells are low, the cytokines are low, I responded well but not too much to the Follistim and now this? UGH! So I told him I took more Follistim and he said that wouldn't really matter. Thank goodness! He said we could still do the IUI in the morning if I go trigger right after we get off the phone. I did. I also peed on a OPK to make sure I hadn't ovulated on my own yet and I hadn't. Disaster averted hopefully!
I contacted my consultant to let her know what happened and to get her opinion on my mistake. She said it might be a good idea to do a double IUI and Brad and I agreed with her. We had the first IUI at 7am Saturday morning. He did an ultrasound to make sure I didn't ovulate on my own yet and I hadn't. This time he said he saw 5 instead of 4 and that made me feel better for our chances. We asked him if we could do a double and he agreed that would be fine. He said it wouldn't up our chances a ton but it could help. I told him since I responded so well this time we would like the best chance possible, even if it only helps a few percentages.
We went back this morning, Sunday, for the second one. I was having lots of cramping before the procedure on my left side along with some CM so I was pretty sure it was happening! I had 4 out of the 5 follies on the left. I pointed to the spot that was cramping and he said that's about the right spot! Come on follies!!! I need all 5 to release in hopes that at least one or two are good eggs. At my age you just never know. ;)
So now we wait. Fortunately I will know ahead of time because I always do. I am going to start testing out the trigger in a few days so I'll let you know what's going on this time hopefully. I was just so disappointed in my response to Clomid last time that I didn't keep anyone in the loop. This time I am cautiously hopeful.
Friday, November 29, 2013
No infusion needed!
I have been stressing out about not receiving my immune numbers yet but the AEB Center called me back this morning and told me that my numbers looked excellent! She didn't say what they were and said the doctor hadn't actually reviewed them yet but told me I definitely won't need a pre-conception infusion this time. And it's a good thing I don't need one because I am almost ready to trigger (possibly tonight) and I couldn't get an appointment at Coram for the infusion until Tuesday. God is so good! I have just been thanking Him and praising Him all day for saving us lots of money and possibly from another miscarriage should I get pregnant. Now I am asking Him to please let this be our cycle for our take-home baby(ies). Our follicles look good (possibly 4 mature in all), my NK cells and cytokines are low, I'm on Lovenox for my clotting disorders and APAs so it just has to work, right? I am asking you to pray this same prayer with me. Thanks girls!!!You all are always in my prayers as well.
Tuesday, November 26, 2013
I spoke too soon!
And the drama returns! I got blood work done yesterday for my Nk cells and cytokines. The lab in CA called today and told me the tubes were labeled with the wrong name so they couldn't run the tests on them. I don't even know how this could've happened??? The girl drew my blood, asked me what needed to be written on them, I watched her write it all on them, then she handed them to me. I never imagined she didn't know my name. Oops!
Soooo long story short after several phones calls to the place where they drew my blood and the lab (all while trying to teach Pre-K students), we got it all worked out. The girl had to fax a paper stating that it was indeed my blood which she is sure of since she drew 50cc out of me. The bad news is now this puts me behind and I may not be able to get my results before Thanksgiving. They said to call them tomorrow to see if they have them done. Please pray that I get them back tomorrow and they say my immune system is still suppressed! I'm not sure if I will have time to schedule an infusion before the IUI which could be very soon.
On a good note, I think I responded pretty well to the Follistim. Here are my follicles:
R-10x16
R-13x7
L-15x12
L-13x15
L-16x15
L-11x12
L-9x11
So the nurse who was measuring said I should have 5 hopefully. I am staying on 150 and then having a repeat ultrasound on Thanksgiving Day. Should this work out, I certainly will be the most thankful mommy ever.
Soooo long story short after several phones calls to the place where they drew my blood and the lab (all while trying to teach Pre-K students), we got it all worked out. The girl had to fax a paper stating that it was indeed my blood which she is sure of since she drew 50cc out of me. The bad news is now this puts me behind and I may not be able to get my results before Thanksgiving. They said to call them tomorrow to see if they have them done. Please pray that I get them back tomorrow and they say my immune system is still suppressed! I'm not sure if I will have time to schedule an infusion before the IUI which could be very soon.
On a good note, I think I responded pretty well to the Follistim. Here are my follicles:
R-10x16
R-13x7
L-15x12
L-13x15
L-16x15
L-11x12
L-9x11
So the nurse who was measuring said I should have 5 hopefully. I am staying on 150 and then having a repeat ultrasound on Thanksgiving Day. Should this work out, I certainly will be the most thankful mommy ever.
Monday, November 25, 2013
Back on the Saddle!
It's CD7 and I've been stimming for 5 days now. I had a clearing ultrasound and E2 draw on CD3 so they started me at 150IU of Follistim. I went back yesterday (on a Sunday) for another E2 draw and that was easier said than done.
The RE's office was supposed to fax my orders over to the hospital on Friday but when I got to registration, they had no order. There was another couple next to me that is going to the same RE that had no orders either. The ladies checked everywhere at registration and then sent someone over to the regular registration desk which is closed on Sunday. Nothing. I didn't know what to do because I had to get it drawn so they could see whether or not to adjust my medication. I decided to call the on-call physician. It was an RE that I went to years ago and left. Yeah. That'll be great.
I call him and he agrees to call the hospital with the orders. (Maybe he didn't remember me or maybe he was just being nice!) So I wait for a while and nothing. I decide to call him back because the lady at registration said they can't accept called-in orders on the weekends, only faxed orders. He wasn't happy about this and demanded to speak to her supervisor. Ouch! Apparently he was at church and did not want to leave to get to a fax machine. Can't blame the guy there.
The head RN called him back and got it all worked out. He said he could take a phone order while the registration girls could not. He hangs up with the RE and then asks me what the diagnosis code is. Huh? I don't know. That's why there are orders. They wrote the same order for the girl that was next to me and we all head to the lab.
We get there and they ask our names. Guess what they have? OUR ORDERS from our own RE! What? I guess no one thought to check the actual lab. Our office did fax them over. I was a little upset but now we can go back to the registration desk to get the correct diagnosis code.
So 2 and 1/2 hours later, my blood was drawn. The funny thing is the RE's office called me about 30 minutes later to say it was 211 and that was good so stay on 150. I got my immune stuff (NK and cytokines) drawn today to see if I'll need another IVIG or not and I go back to the RE tomorrow for another E2 and my first ultrasound on Follistim. Let's hope the rest of this cycle is stress free. So glad tomorrow isn't SUNDAY!!!
The RE's office was supposed to fax my orders over to the hospital on Friday but when I got to registration, they had no order. There was another couple next to me that is going to the same RE that had no orders either. The ladies checked everywhere at registration and then sent someone over to the regular registration desk which is closed on Sunday. Nothing. I didn't know what to do because I had to get it drawn so they could see whether or not to adjust my medication. I decided to call the on-call physician. It was an RE that I went to years ago and left. Yeah. That'll be great.
I call him and he agrees to call the hospital with the orders. (Maybe he didn't remember me or maybe he was just being nice!) So I wait for a while and nothing. I decide to call him back because the lady at registration said they can't accept called-in orders on the weekends, only faxed orders. He wasn't happy about this and demanded to speak to her supervisor. Ouch! Apparently he was at church and did not want to leave to get to a fax machine. Can't blame the guy there.
The head RN called him back and got it all worked out. He said he could take a phone order while the registration girls could not. He hangs up with the RE and then asks me what the diagnosis code is. Huh? I don't know. That's why there are orders. They wrote the same order for the girl that was next to me and we all head to the lab.
We get there and they ask our names. Guess what they have? OUR ORDERS from our own RE! What? I guess no one thought to check the actual lab. Our office did fax them over. I was a little upset but now we can go back to the registration desk to get the correct diagnosis code.
So 2 and 1/2 hours later, my blood was drawn. The funny thing is the RE's office called me about 30 minutes later to say it was 211 and that was good so stay on 150. I got my immune stuff (NK and cytokines) drawn today to see if I'll need another IVIG or not and I go back to the RE tomorrow for another E2 and my first ultrasound on Follistim. Let's hope the rest of this cycle is stress free. So glad tomorrow isn't SUNDAY!!!
Thursday, November 21, 2013
BFN
It didn't work. I had all these plans to document every step of this cycle but when I got to the first follicle scan and I only had 2 on the right, none on the left, I got very discouraged. By the second ultrasound one was measuring 25mm and the other 13mm so neither one was very good. I got a positive OPK the day of that last scan so I had to go in for the IUI the next morning. Now that I am looking back, I should've said no thanks and went with TI but we went ahead with it.
My breasts started to feel very sore on Friday morning three days before the scheduled beta. When I got home from school, I took a test-negative. Maybe it's still too early? Took another on Saturday, then Sunday-negative. At this point I'm starting to believe it didn't work but my boobs start to hurt worse so you start to think maybe all those FRERs are wrong. Well they weren't. I started on Tuesday.
The good news is that I was able to go for an ultrasound today and start my Follistim for our next cycle. I want to put that last one behind me and focus on making descent follicles this time. This will probably be our last attempt. If this doesn't work we may try a FET next.
My breasts started to feel very sore on Friday morning three days before the scheduled beta. When I got home from school, I took a test-negative. Maybe it's still too early? Took another on Saturday, then Sunday-negative. At this point I'm starting to believe it didn't work but my boobs start to hurt worse so you start to think maybe all those FRERs are wrong. Well they weren't. I started on Tuesday.
The good news is that I was able to go for an ultrasound today and start my Follistim for our next cycle. I want to put that last one behind me and focus on making descent follicles this time. This will probably be our last attempt. If this doesn't work we may try a FET next.
Sunday, November 3, 2013
IVIG and follicle tracking
It has been a busy week both in the infertility world and teaching world! On Wednesday I went for my first IVIG infusion in Nashville. I still haven't heard if I will get any insurance coverage or not so it was cheaper to go to the facility instead of having a home health care nurse come to me to administer it. My mom went with me since Brad was out of town. Everything went great! The people at Coram are awesome and I couldn't have asked for a better nurse.
So the infusion was on Wednesday, October 30. Halloween was the next day and since I'm a teacher taking the following day off isn't an option. Luckily I never did feel bad from the infusion. I felt a little sick at lunch on Thursday but I think it's because I didn't hydrate or eat enough the day after. Just so you can see why I needed to go to school, here's a pic!
I went to my RE on Friday afternoon for a follicle tracking ultrasound. I was a little disappointed when I only had 2 on the right and several on the left that were too small to even measure. I usually do much better on Clomid than that but it is what it is. They told me to take OPKs this weekend to make sure we didn't miss ovulation. Luckily they were negative so we are going back for another scan tomorrow. Hopefully the two on the right will be ready soon and I can trigger. I will keep you updated!
My appointment was at 10:00 in Nashville. We only got lost a little! It's not that it was hard to find, it's that my mom and I have no sense of direction whatsoever. |
It's time! I was getting nervous that it was going to start to make me sick soon but it never did. So blessed! |
All done with the IVIG. Now for the water solution. |
My nurse, Mary. She was so awesome and made this experience a pleasant one. |
My assistant and me, the chicken and the egg! Notice how I even incorporate eggs in my costumes! |
My stupid left side is always a slacker. |
Saturday, October 26, 2013
It's go time!
Sorry I haven't posted in a while about what's going on. Planning to teach common core to a bunch of four-year-olds is taking up a lot of my time (which by the way is crazy!!!!!). I'm on CD 6 so I've got one more day of Clomid tomorrow and I start my Lovenox injections today! I go on Wednesday for my fist IVIG injection in Nashville. They will hook me up to an IV and infuse 1,000 different donors of plasma into me for 3 hours. It really dehydrates you so you have to make sure you are eating and drinking water. They keep you for an extra hour afterward to make sure you don't have any kind of reaction to the plasma. I'm a little nervous so keep me in your prayers about this. I also haven't heard if my insurance will cover any of it or not. It's very expensive so we are hoping since they are coding it immune system disease verses infertility that we will at least get some of it paid for but we aren't really expecting it. My first follicle ultrasound is next Friday too. Things are really moving along and I'm getting excited and nervous all at once. I'll try to update when I get a moment's peace from school! :)
Tuesday, October 15, 2013
National Pregnancy and Infant Loss Day
October 15th again. I love this day but I hate this day. I love it because our babies deserve this. They deserve one day to be thought of by others so that it is not so taboo that we miss babies that we never even met. I hate this day because it's another year gone by in which my infertility is unresolved. It really has nothing to do with the day itself. It's because it's an anniversary of something I guess.
I am thankful that this year I am still lighting only 3 candles for myself. I haven't endured any more losses since 2012 so that is a definite positive. So tonight I say a prayer for all of you who are just beginning your journey all the way to those of you who do have your infertility resolved. Even if you've never physically lost a baby, in some way you do if you never get one of your own. I pray we all get that resolution we deserve one day, whether it be through pregnancy, gestational carrier or adoption.
Grant, Caleb and Allyson.....We love and miss all three of you. We know you are well taken care of, you've never known sorrow or pain and Jesus is your best friend. Any parent would love that kind of life for their children. I guess we are really the lucky ones!
I am thankful that this year I am still lighting only 3 candles for myself. I haven't endured any more losses since 2012 so that is a definite positive. So tonight I say a prayer for all of you who are just beginning your journey all the way to those of you who do have your infertility resolved. Even if you've never physically lost a baby, in some way you do if you never get one of your own. I pray we all get that resolution we deserve one day, whether it be through pregnancy, gestational carrier or adoption.
Grant, Caleb and Allyson.....We love and miss all three of you. We know you are well taken care of, you've never known sorrow or pain and Jesus is your best friend. Any parent would love that kind of life for their children. I guess we are really the lucky ones!
Sunday, October 13, 2013
Back on the positive side
Infertility is a strange beast. One minute you feel like giving up, the next minute you are sure it's going to work this time. The truth probably lies somewhere in between but today I am choosing to be positive. I have some of you to thank for that.
Everything is going well. I'm now on Prednisone and waiting to see if we get any coverage for our IVIG infusions. I am penciled in for my first infusion appointment and I found a doctor who was willing to write the home health care nurse order. Only a week or so left until we are on our way to baby (hopefully!) I went from scared to excited again. Thank you for all your words of encouragement. It really helped! Thank You Jesus for allowing things to fall into place perfectly.
Everything is going well. I'm now on Prednisone and waiting to see if we get any coverage for our IVIG infusions. I am penciled in for my first infusion appointment and I found a doctor who was willing to write the home health care nurse order. Only a week or so left until we are on our way to baby (hopefully!) I went from scared to excited again. Thank you for all your words of encouragement. It really helped! Thank You Jesus for allowing things to fall into place perfectly.
Wednesday, October 9, 2013
Scared
Get ready for some emotional rambling......
As we gear up to start treatments again next cycle, I realize that I'm terrified. Yes, I'm excited about the possibilities of this new treatment but I'm also afraid that it will work but only halfway. I'm afraid of pregnancy. So far we haven't gotten along too well the last 3 times and I am so scared of what I could be getting myself into again. I found myself going back through my blog and reading about my last pregnancy and the pain I felt when it was over yet again. We have been on a break from any type of active trying for over a year so I am ready to try again but it's scary. I hurt everyday because I'm not a mother but I don't hurt the way I do when I'm miscarrying. Nothing feels quite like the pain of losing your babies.
I know people can tell you to think positive and nothing will happen. I did that. It didn't work. So yes, if I do get pregnant again in the next few months, I will be terrified through every moment. When you have recurrent miscarriage it just comes with the territory. Nothing anyone can say will make that feeling go away. Brad and I have talked about that if we ever get out of the danger zone (1st trimester) we still don't want to start buying things or do a nursery until the baby is actually born. I guess infertility and pregnancy loss will take the joy out of it once it finally happens for you. I completed a Bible study that spoke about living in the "if" world and how dangerous that it can be. I agree that it is silly to worry about things that may or may not ever happen but when you've known this pain for so long it's hard to think any other way. I know God has a plan, I know I have to trust this is all what's best for me, but that doesn't mean I'm ready for the pain. That doesn't mean it's going to be easy to be pregnant (or even get that way!).
If any of you girls have advice for recurrent miscarriage mom-wannabe's, please share. I don't want to miss out on what could be all we ever wanted due to fear of what could happen. I ask for prayers for peace during this time. I know fear is not from Him.
As we gear up to start treatments again next cycle, I realize that I'm terrified. Yes, I'm excited about the possibilities of this new treatment but I'm also afraid that it will work but only halfway. I'm afraid of pregnancy. So far we haven't gotten along too well the last 3 times and I am so scared of what I could be getting myself into again. I found myself going back through my blog and reading about my last pregnancy and the pain I felt when it was over yet again. We have been on a break from any type of active trying for over a year so I am ready to try again but it's scary. I hurt everyday because I'm not a mother but I don't hurt the way I do when I'm miscarrying. Nothing feels quite like the pain of losing your babies.
I know people can tell you to think positive and nothing will happen. I did that. It didn't work. So yes, if I do get pregnant again in the next few months, I will be terrified through every moment. When you have recurrent miscarriage it just comes with the territory. Nothing anyone can say will make that feeling go away. Brad and I have talked about that if we ever get out of the danger zone (1st trimester) we still don't want to start buying things or do a nursery until the baby is actually born. I guess infertility and pregnancy loss will take the joy out of it once it finally happens for you. I completed a Bible study that spoke about living in the "if" world and how dangerous that it can be. I agree that it is silly to worry about things that may or may not ever happen but when you've known this pain for so long it's hard to think any other way. I know God has a plan, I know I have to trust this is all what's best for me, but that doesn't mean I'm ready for the pain. That doesn't mean it's going to be easy to be pregnant (or even get that way!).
If any of you girls have advice for recurrent miscarriage mom-wannabe's, please share. I don't want to miss out on what could be all we ever wanted due to fear of what could happen. I ask for prayers for peace during this time. I know fear is not from Him.
Tuesday, October 8, 2013
Baby steps
Little by little, this baby making process is moving along....
We apparently misunderstood the treatment plan we were given by the RI. It wasn't IVIG or Humira. What they meant was use Humira for a month, test to see how it's working and if it is, then do one IVIG. The other option they gave us was to do one IVIG then a week or two later, do another IVIG. We had another consulting phone call via facetime with Karen Pace and she explained everything. After speaking with her for about an hour, we decided on a compromise of Prednisone and one IVIG. I contacted the AEB Center and they agreed that it was ok to do that! Yay!
So the next step is to contact companies who administer IVIG through a home health care nurse. Because I am a teacher and cannot spend my entire day on my cell phone, my DH called them for me. (I just love him!) So he found a place in Knoxville that is contracted with my insurance. I left a message this afternoon with the AEB Center to let them know which one we are going to try to use. Hopefully I will hear from them tomorrow and they will send my orders so we can figure out how much this is going to cost us. Ugh. If insurance covers any of this I would be shocked. But after all we have spent this far it almost seemed crazy to go small at this point.
I did start on my 10mg of Prednisone tonight, they called in my Lovenox which I will begin on CD6 of my next cycle. I'm on CD 16 of my current cycle so I've still got a little time to get this all figured out. This is one time I'm thankful for long cycles. If we can get these crazy infusions set up we will be good to go! It's starting to get a little exciting!!!!!:)
We apparently misunderstood the treatment plan we were given by the RI. It wasn't IVIG or Humira. What they meant was use Humira for a month, test to see how it's working and if it is, then do one IVIG. The other option they gave us was to do one IVIG then a week or two later, do another IVIG. We had another consulting phone call via facetime with Karen Pace and she explained everything. After speaking with her for about an hour, we decided on a compromise of Prednisone and one IVIG. I contacted the AEB Center and they agreed that it was ok to do that! Yay!
So the next step is to contact companies who administer IVIG through a home health care nurse. Because I am a teacher and cannot spend my entire day on my cell phone, my DH called them for me. (I just love him!) So he found a place in Knoxville that is contracted with my insurance. I left a message this afternoon with the AEB Center to let them know which one we are going to try to use. Hopefully I will hear from them tomorrow and they will send my orders so we can figure out how much this is going to cost us. Ugh. If insurance covers any of this I would be shocked. But after all we have spent this far it almost seemed crazy to go small at this point.
I did start on my 10mg of Prednisone tonight, they called in my Lovenox which I will begin on CD6 of my next cycle. I'm on CD 16 of my current cycle so I've still got a little time to get this all figured out. This is one time I'm thankful for long cycles. If we can get these crazy infusions set up we will be good to go! It's starting to get a little exciting!!!!!:)
Sunday, September 29, 2013
One step closer
I didn't post about our second LIT trip to Mexico because it was basically the same as before. Everything except for we didn't eat at the Mexican restaurant because it's gross and we received a triple dose instead of just the double. Our friends went back with us that were there the first time and I received a singe dose of her husband while she had a single dose of Brad! There was also one other couple there for their 3rd round. Ugh! We were really hoping we didn't need a third trip.
Luckily it has been long enough after the second round to get my blood drawn and the results are back! My LAD went from 5.2 to 73.7!!!!! The AEB Center likes for this number to be 50 so I did great on this one. This is what the Mexico trip was for so it definitely worked. So glad we went and did the triple dose that second round.
My t-reg was also good at 2.3. They like to see 0.7 or greater on this one so I 'm good there too. As of right now, we don't need any more LIT treatments for now. Yay!
Now for the bad news. LIT doesn't usually work for your elevated NK cells or cytokines so those are still too high. It brought them down a little bit but they are still too high so the fix is either IVIG or Humira. I have emailed our consultant, Karen Pace, with Conceivable Solutions to get her opinion on the two choices. IVIG is of course the clear choice if it were free but it's outrageously expensive so we would rather not do that unless we have to. Not only is it expensive but you must be hooked up to an IV for 4 to 5 hours for each infusion. It would be way easier to just take shots of Humira but we don't know if that is enough to combat my baby killing body! I have an online friend whose NK and cytokine levels are comparable to mine and she just took Predinosone prior to pregnancy and throughout the entire pregnancy. She now has a healthy son who is 8 weeks old.
So now we have to decide which path to take. According to my cycle app on my phone, we have around 25 days to figure out what we are doing. IVIG expensive infusions, Humira to suppress my immune system or Prednisone to combat the inflammation. We're getting closer to our baby!!!!!
Luckily it has been long enough after the second round to get my blood drawn and the results are back! My LAD went from 5.2 to 73.7!!!!! The AEB Center likes for this number to be 50 so I did great on this one. This is what the Mexico trip was for so it definitely worked. So glad we went and did the triple dose that second round.
My t-reg was also good at 2.3. They like to see 0.7 or greater on this one so I 'm good there too. As of right now, we don't need any more LIT treatments for now. Yay!
Now for the bad news. LIT doesn't usually work for your elevated NK cells or cytokines so those are still too high. It brought them down a little bit but they are still too high so the fix is either IVIG or Humira. I have emailed our consultant, Karen Pace, with Conceivable Solutions to get her opinion on the two choices. IVIG is of course the clear choice if it were free but it's outrageously expensive so we would rather not do that unless we have to. Not only is it expensive but you must be hooked up to an IV for 4 to 5 hours for each infusion. It would be way easier to just take shots of Humira but we don't know if that is enough to combat my baby killing body! I have an online friend whose NK and cytokine levels are comparable to mine and she just took Predinosone prior to pregnancy and throughout the entire pregnancy. She now has a healthy son who is 8 weeks old.
So now we have to decide which path to take. According to my cycle app on my phone, we have around 25 days to figure out what we are doing. IVIG expensive infusions, Humira to suppress my immune system or Prednisone to combat the inflammation. We're getting closer to our baby!!!!!
Tuesday, July 23, 2013
First LIT trip to Mexico for a little bambino!
Warning! This post is extremely long because I am not only writing to inform you guys but also to document the experience for my future child. Did you notice that hint of hope and faith? ;)
We're back from south of the border! Let me just say that whether or not any of this will work, it was quite an experience...
We flew out on Friday to Phoenix, rented a car and stopped off at a new outlet mall. It's so hot there that they have those fans that push out mist everywhere. Since I couldn't take any of my medication for asthma, the heat really got to me! Here I am beside a huge cactus next to my favorite store.
We go to McDonald's right beside the border to pick up one more couple. This was their second round and the husband spoke some Spanish so they were a big help. The wife reassured us that everything went fine and there was nothing to worry about. They gave us a lot of comfort in an uncomfortable situation.
When we crossed into Mexico, no one cared. There was no one checking to see if anyone belonged there. You just drive right in. What we saw was pretty scary. Rundown houses piled up on a hill, stores with bars and gates. I know we have places like this in America somewhere but not where I live. I guess I'm sheltered. After seeing this, I was a little worried about the clinic itself. When we arrived at the clinic and walked in, it looked nice, clean and like something you would see here. Whew!!!
They took the husbands in the back room one at a time to draw 10 viles of blood each. It's kinda weird laying down completely to get blood drawn from someone who can't speak to you.
Cesar picked us back up after lunch and we rode back to the clinic to wait for our injections of our husband's white blood cell serum. (Weird.) While waiting I went to the bathroom but there wasn't any toilet paper. I warned the girls about it and the wife who had done this already told me you have to ask for the toilet paper. They keep it behind the front desk. What? So anyway I did and afterward I found out that the septic system or whatever they have instead doesn't allow for you to put anything in the toilet, even toilet paper. Oops.
One by one, they took us back for injections. We were warned by the couple who had already been there that they give them to you right on the doctor's desk. A double dose means you get four injections in each forearm. It felt like long bee stings. It hurt but it wasn't as bad as I thought it would be.
After we all got injected, Cesar took us back to the homeland! We sat in the line of cars to wait our turn to get checked out to come back over and watched as countless Mexicans tried to sell junk on the street in between cars. Food, jewelry and one guy even had a microphone. Not sure what was going on there. None of us bought anything.
We're back from south of the border! Let me just say that whether or not any of this will work, it was quite an experience...
We flew out on Friday to Phoenix, rented a car and stopped off at a new outlet mall. It's so hot there that they have those fans that push out mist everywhere. Since I couldn't take any of my medication for asthma, the heat really got to me! Here I am beside a huge cactus next to my favorite store.
After a little shopping we went to our usual fertility treatment restaurant, The Cheesecake Factory, in Tucson. Next we drove to Nogales, Arizona to stay close to the border at the Candlewood Suites. We have been working with a woman named Jossie from the clinic in Mexico (She's the only person there who speaks English) and she told us if we stayed here they would come pick us up and drive us to the clinic. We were nervous about staying so close but the hotel was super nice!
Even though the bed was comfortable, I didn't sleep at all. I was wide awake with my thoughts wondering what they were going to do to us tomorrow. Would we be late and they would leave without us or worse, would they not show up at all? Is this clinic going to be clean enough? Eventually I slept but when I woke up I was driving Brad crazy that we would be late. Fortunately we were a few minutes early; Unfortunately the driver, Cesar, was not. We waited an hour and half and finally we received a call from Jossie stating that he was running behind with the rain and waiting to cross the border. Luckily we met another couple, Amy and Ken, who were staying there and going with us to do their first LIT! Amy spotted a brown minivan next door at the Holiday Inn so we knew it was Cesar. I had seen this van on blogs when researching this whole process!
Waiting at the hotel |
When we crossed into Mexico, no one cared. There was no one checking to see if anyone belonged there. You just drive right in. What we saw was pretty scary. Rundown houses piled up on a hill, stores with bars and gates. I know we have places like this in America somewhere but not where I live. I guess I'm sheltered. After seeing this, I was a little worried about the clinic itself. When we arrived at the clinic and walked in, it looked nice, clean and like something you would see here. Whew!!!
The fence on the border |
They took the husbands in the back room one at a time to draw 10 viles of blood each. It's kinda weird laying down completely to get blood drawn from someone who can't speak to you.
Since it was now waaaayyyy past our lunchtime and the boys weren't allowed to eat anything before the blood draw, Cesar took us to a nearby Mexican restaurant to eat. Cool atmosphere, gross food but then again I eat like a 6-year-old so I'm very picky. We were even entertained by a genuine Mariachi band thanks to Amy.
They brought out the English menu. It didn't help much when you don't know what anything is anyway. |
Notice how nice the hallway is. If you were scared about the clinic, don't be! |
One by one, they took us back for injections. We were warned by the couple who had already been there that they give them to you right on the doctor's desk. A double dose means you get four injections in each forearm. It felt like long bee stings. It hurt but it wasn't as bad as I thought it would be.
After we all got injected, Cesar took us back to the homeland! We sat in the line of cars to wait our turn to get checked out to come back over and watched as countless Mexicans tried to sell junk on the street in between cars. Food, jewelry and one guy even had a microphone. Not sure what was going on there. None of us bought anything.
We dropped our veteran couple off at the McDonald's and arrived back at the Candlewood. We said our goodbyes to our new friends and started our drive back to Phoenix to spend the night. Here are a few pics of the views we were enjoying. Breathtaking!
We went to the Talking Stick Casino where Brad won $70 on a 2 cent slot machine! We don't really gamble so I put $10 in. When I won $7 I was ready to quit. This describes our personalities so well. I am so conservative while Brad takes risks that scare me. SO glad we were both willing to take this risk to do LIT for the chance at a baby. Let's just hope our bet pays off.
This is a pic of my injection spots Monday night. I am red, itchy and puffy. Yay!!!!! It makes me feel like it's working or something. ;)
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!
Subscribe to:
Posts (Atom)