Thrombophila Results and Breaking Ties

Sorry for the delay in posting about our visit to the RE this week.  I had started the post that afternoon but then I had a 3 day work trip the very next day.  And to top it off the monitor on my laptop cracked so it was basically unusable and hence no lap top to write my post.  But now I'm back home with a computer so here it is!

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We met with our RE regarding all the thrombophilia blood work I had done and everything came back as normal except one: MTHFR A1298C heterozygous. Apparently if you have to have one, this is the one to have. Yea me. And we never would have known about it if I hadn’t pushed for the test. Seriously, we are our own best advocates.

So what does this mean? Well it could effect implantation as well as clots that could have cut off blood flow to the baby. Although our RE is in the camp of Drs that only partially believe that it’s a problem so he wasn’t much help there. Honestly being back in that clinic talking with a Dr. that I have lost my trust in was so emotional for me. And to top it all off, as the RE was going through my results he absent mindedly pulled out our last ultrasound photos to get them out of the way while reviewing our chart and left them right there IN FRONT OF ME. So the whole time I had to stare at these pictures. Who does that?!?! I was really too emotional to talk and Hammer asked most of the questions, he did a really good job speaking for us. Here are some of the questions and answers we got back:


So do you think the MTHFR is part of our issues?

Not necessarily but I would put you on Folgard in the future.

So then as far as a possible embryo adoption cycle, would you do anything different?

I’d irritate the uterine lining because it might help with implantation although we generally use that for women who cannot conceive and you have proven that you can. It would really just be prophylactic since I think it might be an implantation issue. I’d also do the folgard as discussed and increase the progesterone.

Interesting that you would increase the progesterone. Do you think that this was our issue since the progesterone was 6?

No, your corpus luetum at that point in time was gone and the placenta should have taken over in the progesterone production so that’s probably why it was low.

So you don’t think that the progesterone could have been low the entire time due to an IVF cycle where you needed to give me progesterone thus causing a potential clot and preventing the placenta from functioning correctly?

Well most women don’t even need progesterone but we give it anyway because we don’t know who those women are necessarily.

Right, but in my case I wasn’t on any progesterone for nearly four weeks so could I have been one of those women?

[Here is where our RE generally makes odd faces and grunts while he tries to come up with an answer and generally ends up just repeating himself]

So if we did another IVF cycle what would you do differently there?

Same thing as the embryo adoption: uterine irritation, Folgard, increased progesterone and assisted hatching. [way to read our record because we did that this time!] You could also take DHEA at 50 mg.

Wouldn’t you want to test my testosterone levels first?

No, you certainly wouldn’t have high testosterone [Red flag for me here ladies because from what I've read you should never give it without testing first!]

So you wouldn’t change up the stimulation at all?

No other than maybe give you another 75 units of stims.

When we had a follicle check by Dr. S, he asked if we were on a combination Clomid/Injectable regimen?

I would not do that.  There isn't enough proof that it helps.


At this point I was completely done.  I feel like the deadhorse in the proverbial saying and he has the whip.  Seriously, what more can you get out of me using the same protocol every time!  We basically ended the meeting with him telling us to take some time to come up with a plan on what we want to do next. 

Afterward, Hammer and I sat in the car for a bit to talk and absorb everything.  While we did not come up with a plan, we did both agree that we were done with this RE.  Hammer himself said that he didn't feel our RE understood how to help couples that fall outside of the norm like us.  Finally!  He sees what I see!!!  We did discuss getting a second opinion at a clinic an hour and a half away (and that was Hammer suggesting this too!) but we're not moving ahead with that right now.  Although we have learned that this clinic basically takes the patients that ours cannot get pregnant and need more unique, individualized protocols.  Honestly it's not a given that this will happen but Hammer is more open to still trying after the most recent events. I think now I understand why I felt unresolved about ending treatment before.  I was so frustrated at why I could not feel resolved about our treatments coming to an end and ready to move forward with adoption.  I felt a bit of jealously for people who had this clear direction that I was lacking.  I'm not sure what God is doing right now, why he allowed this pregnancy to happen and end the way that it did.  The way is not much clearer than before and we are still praying for direction but we do feel that we are closer than ever to figuring things out.

Back from the Andrologist

The long awaited, long overdue andrology appointment for Mr. Hammer was yesterday.  We were actually concerned it wouldn't happen because a snow storm came through the day before.  Since we were going to a satellite clinic where both us and the Dr would have to travel we had reason to be concerned.  But the storm was not as bad as predicted and the snow quickly melted in the midday sun.  We did make sure to leave earlier than planned and had no problem getting there. 

We had been asked to complete a very extensive health history for Hammer which included the history of infertility on his father's side.  And I also brought copies of every SA Hammer had ever had done by our RE plus the DNA fragmentation results and the list of supplements he is taking.  I have to admit that I was nervous the Dr would look at how Hammer's SAs had improved, dismiss the DNA test and laugh us out of the clinic.  When we arrived at the clinic we did not have to wait at all and Hammer was immediately weighed and we were taken into an exam room.  Once in there we did wait nearly a half hour before the Dr came in.  Hammer began to get increasingly more nervous but he never complained considering everything I had already been through, this was very minor.  Once the Dr came in he apologized and explained that there was a lot of information to review and that Hammer was in a small but 'elite' group of men vying for the most SAs ever performed.  Lucky us.

I'll just say it now, this appointment was everything that we prayed it would be.  For the first time in a long time somebody took us seriously.  He even created an excel sheet timeline (A man after my own type-A heart!) of each SA and had us fill in when the various supplements were added.  He said that from where we were at right now based upon the most recent two SAs everything was finally looking normal and he felt we were on the right track.  He reviewed the supplements and was very pleased with every thing Hammer was taking and said it was exactly what he would have prescribed (yea!)  He did not think anything else was necessary which I was glad to hear. 

Then came the part Hammer was dreading; the physical exam.  But the results were good as well.  There is a small spot on the left side that he'd like to get an ultrasound of but said it very well could be a benign cyst.  He prefers to be thorough and still would like to get it looked at just in case especially with our long history of infertility.  So we'll be getting that scheduled in the next few weeks.  Hammer will also get his testosterone and estrodiol levels tested and if they are off he will be medicaid as appropriate.

Finally he discussed our DNA results which he agreed was a major problem.  What vindication we felt after having our current RE tell us he "didn't believe in it."  He confirmed that at our level it would not only prevent creation of a healthy embryo but would lead to early miscarriage.  The fact that we had a healthy fetus this last time was a good sign that we are figuring things out.  Of course if my body was involved in the loss of our last pregnancy then it does give us hope to know that we really might be getting closer.  He is also going to have us do a repeat DNA test in March after we've done a few lifestyle changes i.e. get that darn laptop off you lap like I've been telling you for the past 3 1/2 years *sigh*  And also because I discovered that while we were in Marco Island, FL Hammer sat in the hot tub so the Dr wants to make sure that we've had 3 months of supplements post 3 months from the hot tube incident of 2010.  He also confirmed that 'cleaning the pipes out' before the test would be helpful except instead of seven days he wants ten days, abstain one day and then provide the test sample.  When we told him we did about 6 days prior to our most recent IVF he was very encouraging about the benefits of that technique for our success.

We left there so encouraged and hopeful.  I wish I would have demanded a referral the minute we got the first DNA test results.  But in reality we would have likely ended up going to the super old local guy and not this one.  I'm so glad we chose this Dr.  and both Hammer and I agree it was not only a great decision but we would refer anyone we knew to him in a heartbeat.  He took so much time with us, listened to us, made us feel so comfortable, was so professional and knowledgeable and we haven't had that sort of treatment in a long time.

So the plan:

• Ultrasound of the left side 'spot'

• Blood work for testosterone and estrodiol

• Continue vitamins and lifestyle changes i.e. laptop

• Based upon the results of the blood test we'll do a repeat DNA test in March or early April with the 10 day; abstain 1 day; test sample 'technique'

If our results come back close to or in the normal range then he would have us do the 10-day technique for our next fertility treatment.  Of course Hammer and I need to talk about that part.  Ever since Hammer found out that our baby was healthy he's pulled back from adoption.  It was totally unexpected so honestly I'm not sure what this means quite yet but we're just taking this one step at a time.  This coming Tuesday we'll learn about the results of my labs.

I am my best advocate

So after some thought, I did not get my blood drawn on Saturday.  Instead, I waited till Monday and requested that they add in the test for MTHFR.  Which they did.  So later that afternoon I had 5 vials of blood drawn; one for each test.  We'll have our appointment to get the results on 1/25 and maybe we'll have some answers.

Completion

Today AF arrived which signaled the completion of our miscarriage. Really everything with the D&C was text book. I barely bled the day of the procedure, had no bleeding for 20 days after the surgery and took about 5 weeks for AF to arrive. I suppose if you have to go through one this would be the best outcome.

I also got my list of additional blood tests that I will have drawn tomorrow:

• factor V (Activated Protein C Resistance) - treatment = heparin or aspirin; may need Foligard if due to high homocystine levels

• antithrombin III (AT III) - treatment = heparin

• protein S (normal is greater than 60% non pregnant, greater than 35% pregnant; If positive retest for free and total values) - treatment = heparin

• factor II (Prothrombin) - treatment = heparin

So at our next appointment we'll get those results as well as for the other two tests for anticardiolipin or lupus anticoagulant.

I am curious why he is not testing for the following:

Protein C - recommended to be tested along with protein S
Fibrinogen
Factor XIII
fibrinolysis (PAI-1)
thrombosis (Human Platelet Antigen-1)
Methylenetetrahydrofolate reductase (MTHFR) gene

I know that I've read they have been associated with 2nd and 3rd trimester loss but I have also heard that a high number of people have MTHFR and that if it is associated with another of the clotting tests that it's a bigger problem. Hmmmmm.

Thank you for all your kind comments and those that shared your stories. It's been a great encouragement. And let me clarify that when I say, "I'm to blame" it's more a wording rather than a negative thought I have about myself. So no stinkin thinkin is going on :)

D&C Results Are In

We just got the results of the D&C. There was NOTHING wrong with our baby.


Of all the results I prepared myself for this was the one I feared. Strange really since it should give us some comfort and joy to know that we can make healthy babies. But now I have to deal with what caused our baby to die. Was it my body? Or worse, was it because of a lack of progesterone because they had told me to stop giving it? I have literally being avoiding this possibility because I have been afraid to let my mind wander down such a dark path of anger and blame if I didn’t have any proof. But now I’m not sure what to think. I am getting more blood drawn for additional tests to see if for any reason my body rejected the baby. Until I get these results I’m still going to withhold my judgment for my own mental health. I still need to recover emotionally from this loss. I should know in 2 weeks if I am to blame or our clinic.

D&C and Next Steps

I delayed posting this because really, who wants to read about a D&C at Christmas? Not me. But I wanted to get this out and over with before the start of the new year. That way we can put this horrible mess behind us and try to move forward.


On Thursday Dec 2nd Hammer and I drove to the outpatient surgery center. I had been NPO (no food or liquids) since midnight and my stomach was a ball of nerves. We checked in at the front desk and I swear the lady knew why I was there because she kept giving us these, “I’m so sorry” eyes the whole time. Hammer and I sat in the waiting room and I snuggled into him with my head on his shoulder. I could not believe that we were actually waiting to have this procedure and my eyes would well up with tears from time to time. Finally a nurse came to take me back to the pre-op room and I had to leave Hammer behind for a bit. As we walked towards the big double doors to the pre-op area I had to stop and broke down and cried. The Nurse gave me a big hug and I apologized that the reality of what was about to happen just hit me hard. She wrapped her arms around my shoulders and said that we’d walk through together. And we did just that all the way to my pre-op room. Once she drew the curtains closed she gave me a huge hug and then to my surprise told me that the Lord has not forgotten me and has plans for us. Wow. She was so sweet getting me settled in and once she was done she went and got Hammer so he could sit with me. While we waited in pre-op Hammer kept kissing me and telling me to remember each one. And then at one point he told me that he was talking his vitamins because he heard that couples are more fertile after this procedure. We had a longer wait than expected because our anesthesiologist got a phone consult. During that time I kept rubbing my tummy and saying goodbye to the little one that was not meant to be. Once he was off the phone he came in to tell me what anesthesia I would be on but really all I cared about was that I was out cold and wouldn’t remember a thing.

Finally they came to take me back. I was wheeled into the operating room and helped up on to the table. The anesthesiologist asked me some questions which I don’t really remember now because he was adding my drugs to the IV. I do remember my doctor attaching the leg harnesses to the table and I had a moment where I realized what an unattractive position I was about to be in with my legs splayed in the air. And at that same moment I realized the lights were spinning around above me and the last thing I remember saying was, “Oh good, the lights are starting to look funny.” And I was out. The next thing I remember was coming to in the recovery room. My first instinct was to reach out and touch my stomach but that brought on the realization that it was all gone now and I wept. I had a new nurse attending to me and she brought me tissues and sat with me. And to my amazement again this new nurse told me that the Lord has plans for us. She let me cry, comforted me and never left my side except to get Hammer when it was time to leave. It was overwhelming to think who these women are that spoke words of comfort to me in our time of sadness. They did not know us, our faith, what we had been through but both of them spoke the same words, “The Lord has plans for us.”

I spent the rest of the day sleeping off my anesthesia on the couch while Hammer took care of me. I was sore and had to take ES Tylen.ol for the pain. The next day my mom came and stayed with me while Hammer went back to work. Later in the day my brother stopped in to keep us company and watch movies. By evening time Hammer came home from work and my dad even stopped by. We all had dinner together and honestly it didn’t feel intrusive or overwhelming, in fact I enjoyed having them all there.


Saturday, Hammer was determined to make our house look Christmas-y. Secretly I think he thought it would cheer me up. He put up the outside lights and even took me out to get a tree. I only wanted a small one but we ended up leaving with the biggest tree we’ve ever had. The stump barely fit in our tree stand. But Hammer insisted on it even though he had to carry and put it up with very minimal help on my part. Later that day he brought up all the boxes of decorations even though he ended up putting most of them by himself once I had tuckered out and passed out on the couch. I appreciated all he did that day as my initial response was to do nothing this year. But now that Christmas has come and gone I think it would have just put me in a more depressed mood to have done nothing.


Sunday evening was my parent’s church’s annual Christmas Cantata which my mother performs in every year. It’s also the church where Hammer and I were married. While we attended I don’t think I was prepared for the overwhelming flood of emotions that hit me. Sitting there made me think about all the dreams and plans of a future together, of a family that were made on our wedding day. And now we sat there 6 years into our marriage, childless, with nothing to show but years of heartache and two losses. I broke down into tears and cried nearly the whole time.


Afterwards they had refreshments and I ran in to the choir director and his wife. They learned that morning of our loss when my mother shared with them what had occurred (she had asked me first). They went on to tell me that their own daughter is now expecting after 7 years of trying and loss and she too had been silent about their struggle and asked her parents to say nothing. Because of this they had suspected that we were having the same issues and revealed that they had been praying for us for the last two years. I was so touched and it brought me to tears once again. I now understand why my mom had asked to share with them.

Three times I had been touched by words of comfort; twice from a stranger and once by a family friend who I had been reluctant to let into our struggle. It has made me realize that we are not forgotten and that the support of trusted family and friends is so important. I will not sugar coat the fact that going through our second Christmas in a row after a miscarriage is one of the most difficult experiences to endure. But I do feel hopeful and I don’t know why exactly but I just feel like we are going to be ok.

We have an appointment for Hammer with an Andrologist at the end of January and maybe we’ll get more answers. But for right now the fertility treatments are done. We still need to discuss the option of embryo adoption but the appointment for the adoption agency is on hold until next year. We just need some time. I am still waiting for my period to come. I’ve read that it takes 10 days after the procedure for your hormones to come down and 20 days without bleeding for your body to reset properly. I have not had any bleeding since the day of the procedure and we’re now at 26 days post D&C. Hopefully AF will be coming soon. I’m actually looking forward to her arrival as it will finally signal the end of this whole debacle. Our results from the D&C are not back yet but we will have an appointment hopefully in the next couple of weeks to discuss the results of the testing and my blood work. Right now I am just using the clinic to get the testing done and trying not to burn bridges in case we need to use them for embryo adoption. I hope that 2011 will finally be the year for us to expand our family one way or another.

Wrapping my Mind Around it All

Now that it's been a little over a week since our D&C I've been trying to get a grip on everything that happened starting with how our IVF cycle ended now that I have all of the information. So here is the whole synopsis.

I guess when they called us with our blood hcg on 10.23.10 the level was 5 and apparently anything 5 and under is negative. So the RN just told me the blood value was negative. I got my period the next day which I thought was odd because normally after I stopped the progesterone it takes like 3 days to come. But I figured it was a blessing. I had a normal 4 day, full blood, yucky, crampy period. Then we went about our lives trying to move on. We went out, ate sushi, drank wine (a glass) etc. I was tired but it was also daylights savings time so figured my body wasn’t adjusting well. Then around Nov 8^th or so I was having mild nausea but it would come and go and wouldn’t be every day so I really thought nothing of it. That same day I started having what I thought was ovulation pain on the left side. I had that sharp twitching that lasted just for a a few seconds and never happened again. I went home that afternoon and took an ovulation test which came up very positive. Even though we didn't 'prep' Hammer for that cycle we did enjoy our selves that night. I had ordered some Instead Cups as I had heard they might help keep the boys up near your cervix. I thought this would be a good time to try them out but certainly didn't think that anything would come of it. On a side note, the Instead Cups fit "most" women but I am not one of those women. When I took the cup out after only a few hours and feeling very uncomfortable the whole time I saw blood and it freaked me out. I have never had mid cycle spotting but I figured that maybe I just irritated my cervix too much trying to make my first attempt to put it in. Total disaster. So I resolved to get a Diva Cup instead which come in different sizes. November 11th was our meeting with the RE and while I sat in the office with him making random guesses that my eggs must be bad because "what's left," I was actually pregnant, oh the irony.

I went to get the flu shot on Monday Nov 15^th and had to fill out the same form 3 times because I kept circling ‘yes’ that I was pregnant and I totally didn’t think I was. I chucked it up to wishful thinking and fatigue and got the shot. A few days later the nausea came in full force and while I never got sick it was hit or miss if I could get up the urge to eat anything. I thought I got the stomach flu from the shot and totally forgot about how I had mild nausea the week before. Later in the week my mother kept telling me to take a HPT but I refused rationalizing that it didn't make sense because I was only a week and a half post ovulation, or so I thought. So certainly my nausea couldn't be morning sickness. My period was supposed to arrive on Friday Nov 19^th but because we’ve been dealing with this for 4 ½ years I’m not really quick to test and wanted to wait to see if it was actually late. We had a wedding for my cousin that weekend so we were out of town and staying at my parents house. I have to admit that over this weekend I did start to get suspicious. My boobs were totally getting sore, the fatigue was setting in but the nausea was lifting a bit and the food cravings and aversions were starting. I was starting to feel more like I did with our first pregnancy where my symptoms started right away. So based upon that factor I thought that maybe we did get pregnant on our own. I never thought that it could be from our IVF cycle because I had a blood test that was negative and period!

When Monday Nov 22 rolled around and my period was nowhere in sight I took a test and it came up positive immediately. Hammer and I were shocked but we totally thought that it had happened naturally. I called my RE and asked for a blood test. The next day we were shocked again to hear it was over 61,000 which falls around levels for 8 ½ to 9 weeks. They immediately scheduled us for an u/s the next day. I took the day off of work just in case which turned out to be a very good decision. At the ultrasound the room was a bit crowded as it was our RE, a student, Hammer and myself. When the image of our baby showed up on the monitor I was totally shocked to see just how far along we were. This was the first time we had ever seen not only a placenta, but an aminotic sac and a little baby attached by it's umbilical cord. It had little hands and feet but as much as I tried to see it there was no flicker on the screen. I kept saying "I don't understand, I had a period, I had a negative blood test." Our doctor did measurements and officially told us that he didn't see a heart beat. He then started rambling on about the crown-to-rump length but honestly after I heard that there was no heart beat I didn't hear anything else. I was in total shock but I do remember telling him that I can't end the pregnancy just yet. After the ultrasound we went back to his office and I slumped into one of the chairs and kept saying, "I don't understand" over and over again. He said that we would be just fine waiting till next week and had his RN schedule another ultrasound for the following Wednesday. When we left the office we went to see my mom who was in town and told both her and my brother, who happened to be there, our shocking news. My mom is a former pathophysiology professor so she was whipping out her manuals and asking us developmentally what we saw on the monitor. It was at about 7 1/2 to 8 weeks development. We went through Thanksgiving weekend in a state of shock and sadness. I totally felt pregnancy symptoms the entire time which was confusing. I could barely eat any of the Thanksgiving meal as I was having food aversions and spent most of the night asleep on the sofa at my Aunt and Uncles house. As the week went on leading up to our appointment I noticed that I started showing. I also discovered I could only fit into two pairs of pants. I'm not a large person so it was very apparent that at only 91/2 -10 weeks that my tummy was sticking out already making it much more emotionally difficult to know that our baby was gone.

The day before I requested to have my hcg and progesterone done so we would have the results at our appointment. The following Wed I had both Hammer and my mother come with me. I also requested no student be present as it was just too much to handle that again. Unfortunately the ultrasound confirmed again what we had already learned the previous week. My mom was there to ask questions that we just wouldn't think of to ask or be too emotional. The baby looked smaller on the screen but I think it just wasn't as good of an angle as the last time. This time we could wrap our minds around it a bit more and felt more prepared to make a decision. My hcg though had continued to go up and was now near 70,000 while my progesterone was only 6. I was hoping that maybe if the hcg was going down it would help make a decision but I was surprised to hear about the progesterone. I have to say it made me suspicious since I hadn't been on progesterone at all. But our RE said that the majority of women don't need the progesterone and likely what I thought was ovulation was my corpus lutem twitching as it worked to increase the progesterone. But I still wonder as I have heard that low progesterone that does not cause bleeding can still cause a decreased amount of blood to the fetus. Our RE offered to let us go another week if we needed it and did say that we could do the Cytotec to bring on a natural miscarriage. But I was completely traumatized by that experience and I only had a gestational sac of 5 weeks that time. We decided to do a D&C because we wanted to have a pathology report done to see if it would give us some answers since we've tried for so long to get this far only to have so much happen and end in tragedy. I had a d&c scheduled for the next day (Dec 2). Since I was 10 week along and my placenta was quite large I didn’t want to try to have a natural miscarriage anyway. There was no knowing when it would actually happen since my hcg kept on rising and I was totally showing already. I don’t think I could have handled having to buy maternity pants just to wait out a miscarriage. And since I didn’t have any medical care, i.e. I stopped my progesterone and thyroid medication, we wanted to know if that was the cause of our loss or if it was genetic.

[I'm going to brag about my mom here because I think she is amazing]

On another note, my mom hated our RE. It made all my feelings more justified. I completely trust her medical opinion above all else as she is literally a walking medical dictionary. And she went head to head with him on the DNA fragmentation. Apparently because I had been talking to her about it she went and looked up the research herself. As editor of a medical journal and NIH grant reviewer she knows good research from bad and agrees with the research on DNA fragmentation as a likely cause of our issues. As we sat there still in shock and disappointment we did enjoy our RE getting his butt handed to him while my mom argued her points. Way to go mom.

Upcoming post...D&C and next steps.