Showing posts with label Reproductive immunology. Show all posts
Showing posts with label Reproductive immunology. Show all posts

Wednesday, March 29, 2017

The search is on!

Last time I wrote, we were deciding between using our own embryos, an egg donor with Brad's sperm or donor embryos into our surrogate. I am happy to announce that we did choose one of these options and I know without a doubt that we are in God's will for our family! It is so exciting to think about what He has in store for us in the near future and the fact that my overactive immune system will not be involved this time gives me extreme hope that we are nearing the end of this nightmare.

The original surrogate that we were planning on using is no longer an option unfortunately for two reasons. She had the twin girls and everything was perfect but she did have to have a c-section. Our fertility clinic won't allow a surrogate to have two c-sections. We also would like to put in two embryos at once since we really want this to work and she isn't comfortable carrying twins again and who could blame her! These were her second set of surro twins so she is only interested in a singleton transfer. So we are on the search for a surrogate and she has been helping us every step of the way.

She invited me to several surrogacy Facebook groups that connect surrogates and intended parents. After only a few weeks I have already connected with a couple of girls who I really love. I've talked with them several times and I really think we may be on our way to a baby or babies! These are incredible women who put their own lives at risk for a complete stranger and it amazes me that they are able to give such an incredible gift. We would appreciate prayer that God will bring us the perfect person to carry these special babies. They are going to be loved beyond measure!

Friday, May 30, 2014

FET for me!

This is my first ever FET cycle. I am so excited! It's simply amazing how much easier this is than fresh. I am on CD 9 and I've been on my 3 times a day Estrace pills. I had an infusion yesterday in Nashville and everything went great. I've been on Lovenox and Prednisone for 4 days and that's it so far!

My blood work is scheduled for June 4 to check my estrogen and progesterone levels. I'll start on my progesterone supplement June 5 and the scan is scheduled for June 9. As long as my lining looks good at the ultrasound, the transfer will be June 10. This is so fast and I'm so glad. That way if it doesn't work (which we all know is a very likely possibility with me!) then I would still have time to try again before school starts back up in August.

Our plan is to transfer our ONE lonely genetic embryo. If he/she doesn't survive the thaw, we will transfer two of the donor embryos. I don't really know how to feel. Is it wrong to want to transfer the adopted ones because I feel like they have a better chance of making it or am I just used to believing our own embryos are crappy? I guess whatever happens is what is supposed to happen. It's hard to think you are making the wrong decision but like I said we can try again if it doesn't work. It's just a lot of money down the drain because one infusion costs over $2,000. Ugh. The price we pay for just a small chance of maybe getting pregnant. But our little lone embryo has been waiting to become thawed and transferred since 2011. My mom always said he was a fighter. We have to give him a chance at life, even if it is in my destructive uterus. Please IVIg fix my killer lady parts! :)

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!!!


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!!!!!:)

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!!!!!

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.


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




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!!!

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. 



 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.

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. ;)








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. 




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

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.



Saturday, October 27, 2012

Reproductive immunology


We are finally moving on to our next endeavor and I'm not talking about the donor embryos. We have decided to work with a reproductive science and immunology consultant. She's experieced infertility and recurrent pregnancy loss herself and has decided to help others determine explanations for their own unexplained infertility. It's not that we are against putting the adopted ones in. I just want to make sure my body wont kill them the way it has possibly killed my own. Have any of you worked with an RI? She's not an actual RI,  just a consultant that helps you find an RI. Since all of this will be long distance, we feel we could use her help and felt her fees were reasonable. Here is what she's helping us with:


"I consult in all areas of infertility and all stages of infertility, but the majority of my clients have "unexplained infertility" or recurrent miscarriages. They have tried IUI and even IVF and failed. I work with them to determine why they have been unable to conceive or carry a pregnancy to term or why their current treatment plan is not working for them.  In order to be thorough, I would like to have a copy of your current medical records. This will allow me to see the tests, results, and treatments that you have completed. I can see what is missing and what may need to be done. I can evaluate how treatments were given and determine reasons for why they may not have worked. Most importantly, based on your past medical history, we can come up with directions and plans for the future. We can also make sure that nothing important has been overlooked (even many things that are not immune related). I will go through your records very carefully and create a "consulting packet" for you. This will contain tests that you have had and an interpretation of them. It will contain tests that I recommend, and why I recommend these tests and what information they will provide us with. Many of the tests can be done through a local lab that is contracted with your insurance company (such as Quest, LabCorp). For the specialized immune tests, your (and your husbands) blood can be mailed to a lab in Chicago called the Clinical Immunology Labs at Rosalind Franklin University. They accept most major insurance plans, but we can email or call them directly to find out if they are contracted with your insurance. If they are, great! If not, we can order from a less expensive lab (that sends the blood to RFU anyway) or we can prioritize the tests to make sure that you are only having the most necessary and fewest tests possible. What I love about this is you can find answers without spending a ton of money (or any money at all).  I can also order blood tests from Rosalind Franklin (an immunology lab) or Reprosource, if that is necessary. I will mail the packet to you and then we will have a comprehensive consultation appointment where we can discuss the packet and I can answer questions about the packet or ANY other questions that you may have. The consultation can be done over the phone or via Skype since you are located in Tennessee. Providing you with the "consulting packet" before we talk makes our time very productive - it gives us plenty to talk about and will give you time to come up with any questions that I can answer during theconsultation appointment . My fee for the comprehensive consultation (reviewing medical records, the packet and the consultationappointment (this appointment usually lasts 2-3 hours) is $500.00. Following the “comprehensive consultation”, you may contact me anytime to ask specific questions about tests, treatments and results, plans or for emotional support during your infertility treatments or pregnancy. Following the comprehensive consultation, my fee is $75/hour (prorated)."


--
Karen E. Pace, Ph.D.
Conceivable Solutions, LLC.
Reproductive Science and Immunology Consulting
@end_infertility




--
Karen E. Pace, Ph.D.
Conceivable Solutions, LLC.
Reproductive Science and Immunology Consulting
@end_infertility