Wednesday, October 14, 2015
Saturday, September 5, 2015
Sunday, August 23, 2015
"These a good problems to have" - my current mantra.
As you may know my husband has a needle phobia. He loathes it. He has been known to faint in the past while getting blood work and immunization. He fainted also a week ago. These are good problems to have.
By Tuesday of last week I want to say that I was 'stupid happy.' Beyond happy to have made it this far with HCG results coming in so nicely.
Then I received word from my RI office about my Immunology Panel. To quote the nurse, "they are pretty OK." Basically, my natural killer cells are slightly activated and my LADs are somewhat low. Recommendation: IVIG. A solution. While this was stressful and less than ideal these are still good problems to have. I am pregnant. We have a shot.
I did another HCG draw after hearing the IVIG news and was reassured by the increase. It is still right on track for where I am. Then I did the IVIG a couple of days ago. I was again reassured to not have to wait through the weekend.
I was happy. Stupid, happy yesterday.
Then today I had some light brown spotting. Suddenly I was filled with anxiety. The timing was unsettling since today I am 5 weeks 6 days pregnant. This is the farthest I have ever gotten, tomorrow I will have broken my previous record. It was very, very unsettling. I talked to my husband about it which I didn't intend on doing until he started to get on my case about being winded after climbing the parking garage stairs (in my defense it is extremely humid here today). I told him to stop picking on me since I was a little stressed. I know spotting is common but given our past history of loss, blood is never something that I can just shake off. I commented about how I wished I could go back to being that naive, excited and happy person I was in my first pregnancy. It seems as though as soon as I get a little bit of confidence something comes along that shakes it. These are good problems to have. I am pregnant.
The spotting was an isolated occurance. It could have been a little irritation from the Crinone I am taking. I could have been something else. Who knows. It is gone and that is all I care about. It did, however, freak me out and remind me that I am far from out to the woods. 7 more weeks until the 2nd trimester. Hopefully we get there and that will give me some piece of mind. We can only hope but again, these are good problems to have.
Friday, August 14, 2015
So I took the call from a new-to-me nurse at my RE's office. She called me around 11:30am today on my day off. She told me my beta was 334 - yippee! Then she told me we wouldn't be doing any more betas - sudden panic! It was a strange to go from sheer joy to sheer panic. I was so excited about the news of my good beta that I just accepted the news about the continued betas (I have my reproductive immunologist that can order those tests if I/they want them). She told me that my first ultrasound will be on September 3. All I could think was "Oh. My. God. That is SO far away."
On September 3, I will be 7 weeks, 2 days. You see, I've never made it to 7 weeks. Not even close. I think my longest lasting pregnancy was 5 weeks 6 days. September 3 seems so far away. Ugh.
Speaking of my Reproductive Immunologist, at the Alan E. Beer Center... Their office has been a dream to work with. They have always been so helpful and understanding and they continue to be. It is wonderful to call and email them and get almost immediate answers. Plus when I email and then call they don't scold me for not being patient. They understand that their patients could be 10 minutes away from a full scale meltdown. The nurse have truly been a sanity-saver. If I didn't have my RI to fall back on I would still be in the same panic I was in after hearing the "no more betas" news. My RE's office just doesn't get it. I do not fit in the typical box. I am not your typical infertility patient. Yes, it has been quite awhile since my last miscarriage but I'm still not their average patient. [end of rant] Don't get me wrong - the RE office nurses are nice, they are knowledgeable. I just feel like they don't understand my anxiety about a loss. Thank goodness for the Alan E. Beer Center.
My sweet husband. I sent him a text with the good news but could help but tell him that I was freaking out a bit. His response was adorable and reassuring (me: blue him: grey)
Here is my HPT progression from 12 DPO to 17 DPO. I'm going to keep testing for piece of mind but mostly with Internet Cheapies (I'm not buying anymore FRERs). I want to see these lines get darker and certainly NOT lighten.
Thursday, August 13, 2015
Wednesday, August 12, 2015
Tuesday, August 11, 2015
Monday, August 10, 2015
Today is Monday, August 10. This morning I awoke and peed on a stick again. It’s still positive but no more so than yesterday. In fact, it is probably fainter than yesterday. My expectations are set for another miscarriage. I am protecting my emotional self from becoming too attached too soon and thinking too far into an idyllic future, a future that is quite uncertain today.
I went in for a bloodtest this morning to see what my levels are. I’m 13 DPO & My HCG is 58. I checked the portal. I haven’t heard from the doctor’s office yet but expect to return for another blood draw on 15 DPO on Wed, August 12
In the meanwhile I will continue taking my pre-natals, vitamins, baby aspirin, Lovenox twice daily and Crinone twice daily. I’m not going to give up without at least giving this embryo a shot at making it. I’ll also be taking another test tomorrow and crossing my fingers that the line is darker. You never know. It’s not over until it’s over.
I called my Reproductive Immunologist this morning and filled them in on the situation. They are emailing me some lab requisitions for Wednesday afternoon. I will wait on their bloodwork until I have a better idea of which direction the pregnancy is going in.
At the end of the day this is progress. I haven’t been pregnant in over 3 years and with MUCH medical intervention so even if I miscarry this is a step in the right direction. I whole-heartedly believe that my new supplements have helped this pregnancy happen. Yes, many factors are always in play but I genuinely feel that the Acai Berry supplement had a significant impact in getting us where we are right now.
Three cheers for Acai Berries and fingers crossed for a good beta on Wednesday.
Sunday, August 9, 2015
This Sunday morning started like most days when my period is approaching. I get up at 6am, use the bathroom, dip a pee stick and go right back to bed without waiting for the results. It's Sunday, after all, I want to sleep in. Why bother waiting for the test result? Sleep is much more desirable on these precious weekends. Fast forward 2 hours. I rise again at 8:30am to actually get up and start my lazy morning.
I start my morning routine. Feed the cats, take my thyroid med, run the sprinklers, start the dishwasher, open the shades and finally sit with the cats & watch a crappy TV while I plan out my day. While watching crappy TV, I realized that I had a splinter/sliver from this weekends' project - Operation Garage Clean Up. I peel the sleeping cat off my lap to tend to my sliver in the bathroom when it occurred to me that I never check that pregnancy test.
I picked up the 5 hour old pregnancy test with the normal rhythm I've acquired over the last 3 years of seeing those dreadful but expected negative pregnancy tests. You know - pick it up, quickly glance, then put it straight in the garbage and quickly move on.
This morning was different. This morning I glanced at the test a saw a faint line. I did a double take. "Wait. What? Is that a line? I think that's a line..." I immediately began shaking. I couldn't believe my eyes. Then I realized that this test was 5 hours old. It could definitely be a false positive. "Don't get excited yet, Sunny," I tell myself.
Of course, I peed again and tested again with another internet cheapie at 11:00am. Is this second morning urine? I can't remember. Let's just focus on the sliver. 5 minutes later... Faint positive! Oh my god. Seriously? I'm pregnant? No way! Out comes the expired First Response pregnancy test that has been waiting for this very occassion. Another faint positive. Holy cow!
What do I do now?! What DPO am I again? I'm nervous-excited. I freak out a little. My mind begins racing. Yes, we tried. Yes, we timed it perfectly. Yes, my CM has been a little more plentiful after ovulation but I quickly explained that away. BUT... I feel off the Lovenox train. Since I actually ovulated this month and we caught the egg just in time I decided to throw everything at this cycle before starting another round of IVF. All-in included Lovenox & baby aspirin. The problem is I fell off the Lovenox train after 7 DPO and skipped a couple of baby aspirins in the TWW. I took Lovenox nightly on 2-5 DPO & 7 DPO. Today is 12 DPO. The worry begins to set in. The insecurities creep in.
Get it together. Let's think about next steps. Don't get too excited.
History has not been kind to me in these traditionally happy times. Could this time be different? What is different this time? 1. I've been taking additional supplements since mid June. 2. My failed IVF cycle could have acted as replacement for a uterine scratch... which is supposed to jump started the immune system in my uterus. 3. I did do an IVIG infusion not too long ago - maybe it helped. 4. I have been taking blood thinners, albeit inconsistently, that are supposed to help with implantation.
I am cautiously optimistic. But... Today I am pregnant. Oh. My. Goodness. Today I am pregnant.
Thursday, July 16, 2015
Thursday, June 11, 2015
Wednesday, June 10, 2015
Unfortunately, I'm writing about it again because I am not pregnant. I'm sad. Sadder than last time.
This time we had fewer eggs than expected (empty follicles? what?!), of poorer quality at the 3 day transfer mark (6 cells vs. 8 cells), and nothing left over to freeze (booooo). It feels like this IVF cycle was a complete bust even though I had high hopes going into it because it was our first cycle using our new immune protocol. The immune protocol included:
- IVIG infusion. Three weeks before the Egg Retrieval
- Lovenox. Beginning on the 1st day of stims and through the two week wait. That's a LOT of shots.
- Baby Aspirin. Beginning on CD1
The two of us have always approached all of our challenges very differently. I'm more of a long term planner and worst case scenario person whereas he is the optimist that can only think ahead one step at a time. While there is nothing wrong with our different survival techniques, it does make it difficult to talk about constructively.
He isn't ready to think about and discuss the "what if this doesn't work scenarios" whereas I would like to have the conversation so I can look ahead when my, always TTC preoccupied, mind is in a downward spiral. Do you know what I mean? Can you relate to that mentality?
As far as I am concerned we have four options: 1. Another IVF cycle (we have 4 more tries through insurance). 2. Surrogacy/gestational carrier (husband is "not a fan"). 3. Adoption (I've changed my mind on this and husband isn't ready to discuss it aside from "this is a daunting process"). 4. Move on with life (live life without kid(s). Not sure I'm up for that).
Because we have only given this immune protocol ONE try, under less than ideal circumstances, we feel like we need to give it another try. I would like to do another fresh IVF cycle and try to add a few more controls in order to optimize our chances of success with the immune protocol.
Here is the new plan:
- Fresh IVF cycle with whatever protocol my RE feels we should try next
- FREEZE ALL embryos that make it to Day 5 (roll the dice and take our chances on them making it to freeze. I do NOT want anymore Day 3 transfers. I didn't want the last one and in a way this freeze all approach will ensure that my next transfer will not be a Day 3 either
- Let my body recover after the Fresh IVF cycle (right now my TSH is spiked from the fertility meds - not ideal
- IVIG infusion appropriately timed for an FET cycle
- NATURAL FET cycle. No estrogen, no trigger shot. Just transfer the blast(s) 5 days after I have naturally ovulated
- Transfer 5-Day Blast(s). One or two depending on the recommendation of my Reproductive Immunologist. I am asking their opinion this time too.
So this is what I'm going to propose to my RE office:
Fine, I'll wait for my appt on July 16 but I want to start my next IVF cycle protocol, whatever that may be, BEFORE the freaking appointment. Hopefully I am successful. Fingers crossed.
On a side note/sad note, I had a terrible dream that I had my IVF follow up appointment and my RE cut me loose and was giving up on me. She literally turned me away and said she wasn't going to help me anymore. How awful would that be? (cry face)
Wednesday, June 3, 2015
Tuesday, June 2, 2015
Monday, June 1, 2015
Wednesday, May 27, 2015
It begins with the baseline bloodwork and the visits for bloodwork ramp up in frequency from there. Getting your blood drawn every day is not nice. I had my blood drawn 6 times in a span of 7 days. Ouch. Overall, throughout the cycle I had blood drawn 8 times in 3 weeks, not counting my IV and IVIG infusion.
Shots are never fun. I administer them to myself since my husband, like many men, is squeamish around needles. Squeamish is putting it mildly. He passes out at the site of a needle, gets light headed talking about shots and literally shutters when seeing my shot sites on my arms and stomach.
Internal ultrasounds. Yup, I am going there. In an IVF cycle you are getting more action from the ultrasound probe than your husband. Seriously. My husband knew to stay the hell away from me during IVF. I've been poked and prodded enough thank you very much (and the worst is to come... egg retrieval)
I am covered with bruises, both visible and perceived. Both of my arms are covered in bruises. My stomach is bruised from injections. My lady bits feel bruised from all of the internal ultrasounds. No lies.
Enlarged, throbbing ovaries. I never thought I would feel like my ovaries would attack my other organs until I went through IVF. There were times when I could feel my ovaries responding to the stims and envisioned them gobbling up my appendix or something. They felt like they were moving throughout my abdominal cavity and were threatening to bust out of my abdomen altogether. (I am exagerrating here. My ovaries are quite well behaved compared to other women undergoing IVF be geesh I could still feel them plumping up)
Egg retrieval is surgery and do not forget it. I was sore and I was uncomfortable. It is surgery people. (Confession: I have a HIGH pain tolerance and wasn't too impacted by this surgery when compared to other people. I had to force myself to take it easy. Still, though, it is not pleasant)
Time. By this point a tremendous amount of time has been devoted to IVF. Early mornings at the Doctors office followed by a full day of work and awaiting nightly shots is physically exhausting. Shaving your legs daily, in preparation for your ultrasounds, is utterly draining, honestly. I don't want to shave my legs for two weeks after everything is said and done. Then there is all the time off you need for surgery and transfer.
IVF is a rollercoaster of emotions. One day you are extremely optimistic, the next day you are in the depths of despair.
You question everything and every decision. Should I...? Would it be better if...? I should have...
Every appointment has the potential to end in disaster. Ever phone call could spell out misfortune.
Hormones can play havoc, plain and simple.
Follicle concern. How many follicles do I have? Are they similarly sized? Are they growing as expected?
Uterine Lining. Is it thick enough? Is it too think? Will this be an issue?
Surgery can be scary, especially for your first egg retrieval procedure. How will my recovery be? Will I be able to handle the pain? Will I be able to go back to work? At the top of you mind however is the ever present question of: how many eggs? How many are there? I wonder how many eggs we are working with. I wonder how many will be mature. I wonder how many will fertilize. I wonder if this will work. Will this work? Why am I doing this to myself? This had better work.
How are my embryos doing? Will I have a 3 day transfer or a 5 day transfer? Will there be anything left to freeze? What are our odds?
Egg transfer. You arrive. They prep you. You drink plenty of water. All the while you are constantly wondering: what are we working with? Are the embryos on-track based on their day of development? How many cells do they have? What sort of fragmentation do they have? Are they symmetrical? What are the odds given how they look? Where is the Doctor for pete's sake. Just tell me already. Sheesh.
The two-week wait is brutal... brutal. FOR ME, THIS IS THE WORST PART OF ANY TREATMENT CYCLE. I hate this part. You have hope, doubt and fear all at the same time and all in the same day. Some days are better than others and some days are tolerable. Just get through it. You will get through it. That's what I tell myself.
To sum it up: IVF is a complete mind fuck. It takes otherwise rational human beings and turns them into a neurotic mess.
IVF is a brutal process, both physically and emotionally. AND I WOULD DO IT ALL OVER AGAIN IF GIVEN THE CHANCE TO HAVE A BABY. Without a doubt. No hesitation. I am five days out from my egg retrieval and I am certain that I would do this again. In a heartbeat. Mind fuck or not. Yes.
Surprisingly, I am okay with that. I guess it is because we will get to do another fresh IVF cycle sooner than later. We get a do-over.
What I am not okay with is the thought that if that embryo didn't make it to freeze how are the embryos they transferred on Monday going to make it?
Admittedly, I'm in a glass half full type of mindset right now but I wasn't this way all day. I woke up feeling better about everything. Maybe writing the blog post last night helped. Maybe not. Who knows?
I often wonder how far we will take this IVF stuff. I think I've previously written that I couldn't envision too many more IVF cycles but now I am not so sure. You could call me a flip-flopper. Should I blame the seasons on that? Doctors giving me hope? Hormones? All of the above?
How much trying is enough? How do you decide that? I thought I went through a sense of acceptance last summer but that was before working with the reproductive immunologist. That was before we had a sort-of-diagnosis and something to go on. NOW how do we decide when enough is enough? It's like I am on another carousel ride, seeing the same scenery all over again.
Can we fast forward a few days and just get this over with? Am I or aren't I? If so, will I be able to keep it? If not, can I survive another miscarriage? Can I endure being childless? Where do we go from here?
I'm always ahead of myself. This two-week wait is just the worst. Thankfully tomorrow is my "Friday" so I can keep myself busy and keep my mind off of the wait. Ugh.
Tuesday, May 26, 2015
The optimism was sucked out of the room when they told me that they retrieved only 9 eggs. I say only 9 eggs and that the optimism was dashed because I had 16 follicles. SO I REALLY EXPECTED TO GET AROUND 15 EGGS AND I WAS THRILLED ABOUT THAT. But instead we had 7 EMPTY follicles and only 9. Had I only had 10-12 follicles I would have been adequately prepared to get only 9 eggs... So that is why the optimism has left the building.
Then came hope. We hoped that of the 9 eggs 6 would fertilize and qualify us for a 5 day transfer. NOPE. We had 5 fertilize with ICSI which meant that we were automatically assigned a 3 day transfer... You know since they want to have something left to transfer and not "poop out in the dish"
The new hope... Good quality 8-cell, 3 day embryos like we transferred last time. NOPE. On Day 3 we had three 6-cell embryos and two 4-cell embryos. Not bad but not ideal.
So yesterday we transferred two 6-cell embryos with slight fragmentation. I am not optimistic about our odds. As far as I can tell our chances of one of them taking are about 30%. Not great, but not terrible either.
The kinda-silver-lining is that we may have one that may make it to freeze (that other 6-cell embyro). The less than ideal news with that is there is only one. If we are going to invest in another cycle I would to transfer two. Especially considering the $4,000 out of pocket IVIG infusion I have to do prior to each transfer.
Beta is June 8. I won't be waiting until June 8 to test though. I will try to make it to Wednesday, June 3 to test. I doubt I will make it that long. I will probably be able to make it to Monday, June 1. I did test yesterday just to be sure that the HCG trigger shot is out of my system. It is.
Saturday, May 9, 2015
I suppose that since last year, after a failed fresh IVF and a failed frozen egg transfer, I have been slowly coming to terms with the fact that we may never have a child. Last summer I was a wreck about it when beginning to come to terms with that possibility. Now, though, I am more at peace with whatever happens.
However, since seeking out an RI, finding gene mutations and uterus challenges, I have continued to be optimistic.
I'm optimistic that this treatment plan will help us. It's a strange sort of optimism with a side of worry. For the first time in a very long time I am more worried about miscarrying than conceiving. It's a tough feeling to accurately describe. I am so optimistic that I'll get pregnant but also that I'll have something to lose again.
As difficult as these once buried emotions are, I welcome them. Ugh.
Where are we now? In the midst of IVF stimulation. I did my IVIG infusion towards the end of April.
I started my stim medication yesterday - Gonal F. I'm also taking Lovenox. So far so good with the Lovenox. I was quite scared to inject the Lovenox given the discomfort and bruising that many women experience. I guess I'm lucky since it really hasn't been that bad. Hopefully it stays that way.
On Wednesday, I go in for blood work and will go from there. I'm expecting/guessing that my egg retrieval will be on May 20. Eeeeek! Yippee! It's about time!!!!!!!
Oh yeah, I'm also doing a low carb/high protein diet to help improve egg quality.... I'm bathing my eggs in protein which is supposed to be good for them. I suspect that my "poor egg quality" (as the doctors put it) in my first cycle (4 embryos from 17 eggs) may be because of the lack of protein in my diet. Who knows though? I guess if we have better results from this cycle the diet worked.
I cannot say that I am a fan of this type of eating but I've been doing my best to limit my carbs and increase my protein. It's funny that I am doing this diet considering I've never modified my eating habits for fertility before. I honestly find this diet a HUGE challenge. I'm not a big meat eater. I've joked that I barely eat meat and now here I am eating meat at every meal. It's tough. It's also tough that I have completely cut out bread, potatoes and most sugar. Did I mention that this is TOUGH.
Hopefully this diet gives us great results, if not, my misery will have been for nothing. I have had digestive issues (stomach ulcers, IBS, lactose intolerance, etc.) for many years and this diet is not helping these issues in the least, nor is it causing me to lose any weight. If anything, I've GAINED weight. Blah!
If this diet works it will have all been worth it. Even if it doesn't work it was worth a try. Sacrifice is part of this process and part of being okay with the outcome - whatever it is. It will be okay. Everything will be okay.
Tuesday, February 24, 2015
It was strangely satisfying, a little bit sad but also a sign of my optimism right now.
I've been here before. Heck, I even bought a crib that is sequestered to my basement as I type this. I hope to not be let down like last time. Although it is nice to feel optimistic again for a change, I do hope it can stay this way.
I'm nervous, anxious and excited to be on the cusp of beginning another IVF cycle. This is a good mental place to be in when beginning something so time consuming, emotionally draining and with a certain level of physical pain associated with it. I am in the right frame of mind to begin the grueling two month IVF schedule.
I am calm and at peace which is just so lovely.
Monday, February 16, 2015
Is it ideal to pay out pocket? No.
Will it be a strain? Yes, to an extent.
Will I regret the decision to follow the doctors' recommendation? Never.
I owe it to my future-self to try. I need to be able to look back, 10 years from now, and be satisfied
with the steps we have taken to have a family. I want no regrets. I want no "we should haves" or "we could haves." You cannot put a price on peace of mind.
Thankfully, right now I have peace of mind. I feel well cared for among the entire team of doctors that are looking after me. I feel supported by my family. I feel supported by my husband. Overall I feel good about where we are and where we are headed.
I can finally breathe easy for a few days until I need to figure our IVF schedule and where IVIG falls into the mix. It's hard to know when to schedule IVIG when there are so many factors at play in IVF that put a wrench in a treatment schedule. It's a tough spot to be in but that is a worry for next week, not this week. One thing at a time. One day at a time.
Today I am Zen.
Friday, February 6, 2015
Thursday, February 5, 2015
Monday, February 2, 2015
They found things.
Let me back up a little.
My consultation was on Thursday, January 29. On Tuesday, January 27 the Beer Center representative emailed me copies of my test results so I would have them in front of me for the phone consultation with Dr. Trobough. My husband didn't want me to even look at them. Yeah Right. This was a good idea, you know, so I wouldn't obsess about anything until the phone call happened. So I told myself that I would simply print them, organize them for the phone call and SKIM over them. This seemed like a good way to look without giving myself the opportunity to obsess. Great idea.
So, I skimmed over my test results. Nothing seemed to leap off the page.... until I read 'mutation'.
Hmmm, I have a gene mutation. Interesting.
Hmmm, I have another gene mutation. Interesting.
Hmmm, I have yet another gene mutation. This is all sorts of interesting now.
I am very proud of myself for limiting my research to mostly The Beer Center's website for insight into what the gene mutations effect. I basically did a wikipedia version of research about these mutations. I am proud that I was able to stop myself from obsessing. Very proud.
My Gene Mutations and What I Initially Learned:
MTHFR C667T mutation on both alleles (Homozygous Mutant)
Factor XIII V34 L mutation on one allele (Heterozygous Mutant)
PAI 1 4G/5G one copy of 4G variant (Heterozygous Mutant)
A few words about Gene Mutations:
Having these gene mutation makes me genetically predisposed to potential problems. It doesn't mean that I automatically have a problem. It does mean though that I have a higher likelihood of developing these health problems than the general population does.
MTHFR C667T Homozygous
Having this common gene mutation may impair my ability to process folate. Folate is essential to avoid neural tube defects in the baby. Neural tube defects are birth defects of the brain, spine, or spinal cord. Having a double mutation of this gene is not good news. However, having mutated MTHFR genes but normal homocystine levels means that my body is functioning properly, so far.
Factor XIII V34 L Heterozygous
An inherited gene mutation associated with an increased risk of Thromobphilia (blood clots, deep vein thrombosis, pulmonary embolism). This is not a big shock due to my family history.
PAI 1 4G/5G Heterozygous
This gene is associated with the physiological breakdown of blood clots.
And Now for The Cherry on Top of my Mutation Sundae:
Studies have shown that people with BOTH a PAI 1 mutation and a Factor XIII 34L mutation, known as compound carrier status, have a significantly increased risk for early pregnancy loss. Study can be found here.
A superstorm. Great. Did you just get the chills? I certainly did. Not only do I have a genetic predisposition to clot I also have a genetic predisposition to NOT break down clots correctly.
So you could say that I was appropriately prepared for my phone consultation.
The Phone Consultation
Dr. Trobough called and went over my health history and asked me additional questions. Then he jumped right into reviewing my blood test results. He started with the immune system tests:
- Leukocyte Antibody Detection (LAD) normal
- T Regulatory Cells (CD4/CD25/FoxP3+) normal
- Natural Killer Assay (NK Assay) normal
- TH1 : TH2 Cytokine ratios (TNF-a & IFN-g) normal
- Anti-DNA, Histones (anti-dsDNA, anti-ssDNA, Anti-Histone, Anti-Sci70) - negative
- Auto-Antiphosphilipids Antibodies II (too many to list) - negative
- Then, because of the sheer number of tests like these he made a blanket statement about all of my antibodies being normal
- Major factors were all normal (Leiden V, etc.)
- Minor factors:
- MTHFR "not a factor in my miscarriages because of my normal homocystine levels"
- PAI 1 "The combination of PAI 1 and Factor XIII is associated with early loss"
- Factor XIII "The combination of PAI 1 and Factor XIII is associated with early loss" "This combination could be a factor in your losses"
- He began our conversation by telling me that my CD57+ cells were normal. He said that the FoxP3+ cells are actually T Regulatory cells but that for clarity in charting they refer to them as FoxP3+ because they are not from blood tests but rather the endometrial biopsy. He said my FoxP3+/T Regulatory cells were low. He would like to see 2 or 3. I had 1.
- What do FoxP3+ cells do anyway? These cells are thought to be very important in establishing maternal immune tolerance to the fetus. In patients with low values they find an increased instance of primary unexplained infertility.
- This was a light bulb moment for me. Not only do we possibly have a reason for the miscarriages we could now have a reason why IVF has failed. Vindication!
- TSH was 2.9 (only two months after upping my dose. Grrr.) He recommends that I up my dose to 25 mcg everyday.
- Vitamin D - 36 (low end of normal range). He was pleased with this number and honestly I was shocked by it. It is the heart of winter in New England and I am never outside. AND this number was without any supplementation.
- Mild insulin resistance. Apparently I have it but he doesn't want to treat it since it is so mild. I am not sure where that result is within my pages and pages of test results. I will look into that later.
So Dr. Troubough wants to treat these findings as follows with my plan to proceed with another round of IVF:
- Blood Thinners for the superstorm of gene mutations. Lovenox until 12 or 13 weeks. I will begin Lovenox 2 days after egg retrieval. 1 shot/day until a positive pregnancy test. 2 shots/day once pregnant. (More shots? No big deal)
- Increase my Levothyroxine to 25 mcg daily (I was on 12.5mcg on Mon-Sat and 25mcg on Sun)
- IVIG infusion to address the FoxP3+ situation. This will happen 1 month before retrieval.
Dr. Trobough will be writing a treatment letter for me to share with my endocrinologist (to increase my thyroid meds) and my RE (so she is in the loop). I hope that these doctors are supportive but at the end of the day that doesn't matter. Dr. Trobough will be my prescribing doctor for the Lovenox and IVIG infusion. This is great news simply because I will not have to convince my RE to prescribe anything. Nor does she need to believe in any of this research or recommendations.
My Take on All of This
The order of my emotions and how I am processing all of this:
- Relief that they found something to address
- Vindication that I am not nuts
- They found something and a treatment plan is in place. I have hope and optimism BUT, I am still guarded. Just because we have something to go by doesn't mean that it will work. I hope that I am on the right track but I am still guarded about these new things working to get me pregnant and KEEP me pregnant. I guess I'm just a little overwhelmed right now especially with little to no information for me to look for about success stories for my particular circumstances (like forums for reassurance). I don't like to put all of my trust in Drs. It hasn't served me well in the past. Regardless, it's good news to be worried about a treatment plan rather than WHY?
- I've had time to let this all soak in and I am relieved and eager to begin another treatment cycle soon. We haven't been trying since our failed FET in July so we have been benched for quite awhile. We weren't not trying because of our Doctor's advice but more so because "if IVF and an FET didn't work trying naturally isn't likely to work either"
- Call our Moms and let them in on the results
- Find a new prenatal with Folate instead of Folic Acid to be on the safe side. While my doctor doesn't believe my MTHFR mutation to be an issue I want to error on the side of caution and switch to a MTHFR-friendly prenatal. (you try googling "MTHFR Pregnancy" and try not to get freaked out by all of the possible problems, miscarriages and horror stories)
- Contact my new Rx mail service about setting up a new account (2015 = insurance through my employer instead of my husbands')
- Lookup and log my TSH values from October. (My Endo Dr. said "they were fine" but gave me no values)
- Contact my Endocrinologist about increasing my dosage to 25 mcg daily. I expect her to agree to this without the treatment letter from my RI but we shall see.
- Call my RE's office
- Update insurance information
- Inform them that I have my test results and will be mailing them a treatment letter soon
- Request them to initiate a new IVF approval letter from my insurance company
- Draft a IVF cycle calendar so I can note important dates, etc.
Rainshower: I am a mutant ;) My maternal immune tolerance to a fetus isn't terrible but it isn't great either.
Rainbow: I know I am a mutant and that my maternal immune tolerance isn't great and now we can try to do something about it! Without the rain there would be no rainbow.
Tuesday, January 20, 2015
Thursday, January 15, 2015
More blood work.
More out-of-pocket expenses for other peoples' mistakes. (Sheesh)
I had my standard panel done at my local lab on December 15. (I've had many of these tests done already but just not within the last year.) These fasting tests included:
- ANA reflex titer with positive
- FSH (CD 3)
- CBC with Platelets
- Fasting Total Insulin
- Anti-TPO (Peroxidase)
- Free T4
- PAI-1 4G/5G gene mutation
- PAI-1 Activator Inhibitor Activity
- Antithrombin III Activity
- Comprehensive Metabolic Panel
- Prothrombin Gene Mutation (Factor II)
- MTHFR C677T and A1298C (mutation)
- Serum Immunoglobulins (IgG, IgM, IgA)
- Leiden Fact V gene mutation
- Ovarian Antibodies IgG
- ABO, RH (blood type)
- Serotonin (serum)
- Protein C, Activity/Functional
- Protein S, Activity/Functional
- Vitamin D 25 Hydroxy
- NK Assay Full Panel
- TH1:TH2 Cytokine Panel
- Leukocyte Antibody Detection Panel
- Human T-reg
- Factor Xiii Gene Polymorphism
- Antiphopholipid Panel
- Anti-DNA/Histone Panel
Yesterday, I was filled with anxiety and fear when I found out the news about the missing tests. I was frustrated both at the lab and at myself for giving my lab the benefit of the doubt and not checking to be sure that the blood tests had been faxed to The Beer Center as they assured me they would. The results weren't faxed. When will I learn? I'm the one that is impacted by their mistakes and their ambivalence. (ugh)
Today I feel better, however.
I feel better today because my repeat blood work is complete and I will be able to schedule my consult tomorrow (I think). I feel better because the representative at the Beer Center was wonderful. She called me back right away, before I headed to the alternate lab, to tell me to add the missing/incorrectly performed tests to my requisition for the skipped test. How wonderful is that? I emailed her and she called me within 10 minutes in order to help me avoid multiple needle jabs this week and multiple trips to the alternate lab. She was so nice and helpful and it is a breath of fresh air.
For the first time I feel like I am being seen by a Center that "knows what to do with me." Do you know what I mean? At my various RE offices throughout the years I have always felt like they were always puzzled by me/my medical situation and didn't know what to do with me even though they always had the best intentions and sincerest interest in helping me bring home a baby.
Today was a good day... Hopefully 2015 will be filled with more days like today. Every year I say it and every year I believe it to be true but "2015 will be my year"