I'll admit it. I spent an inordinate amount of time researching strollers & car seats for my someday baby this weekend. My secret board on Pinterest was reviewed and added to. I could have and should have accomplished other things with my time but I suppose it was nice to dream for a little while.
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.
Tuesday, February 24, 2015
Monday, February 16, 2015
IVIG wheels are in motion
The wheels have been placed in motion for IVIG and now I finally have a little less to worry about and fewer phone calls to make. Unfortunately, IVIG will be an out-of-pocket expense but we are incredibly fortunate to have infertility coverage so IVF will be covered. I really cannot complain, especially being as fortunate as we have been in these last few years. I would hate to imagine what our out-of-pocket expenses would have been if we didn't have coverage and if we didn't have the coverage we probably wouldn't be on the road we are finally on. We have saved an incredible amount of money with our infertility coverage so I just need to suck it up.
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.
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
Nurses are Fantastic!
Nurses keep me informed. Nurses keep me educated. Nurses keep my spirits up. Most importantly though, nurses keep me sane.
Admittedly, I was freaking out yesterday. I was unsure of some test results that my doctor did not go over with me specifically but included in my patient letter. There was extreme skepticism about the treatment plan actually working especially because I have no idea of the likelihood. I was also worried about the financial aspect of IVIG.
Thankfully many of the things I was freaking out about have been explained to me by a nurse who listened to my additional questions and put me at ease. She was able to give me the assurance that the Doctor did not give me last week at the end of our phone call.
Most importantly the nurse made me realize that I need to slow down. Part of my anxiety has been tied to my desire to start a fresh IVF cycle next week. I don't think I have enough things in order to proceed with that plan. This is good and bad. The timing of a Feb-Mar cycle would have been ideal with our work schedules however there are still many phone calls to make, most specifically about IVIG.
In addition to the financial aspects of IVIG the nurse reminded me that it takes 6 weeks for your TSH levels to go down after a medication increase.
So I am going to put aside my wish to start IVF sooner than later. This will give me time for my thyroid medication to work and to make the 400 phone calls I need to make to try to get IVIG covered by my insurance and set up for infusion. Before yesterday it was my hope that I would only need one IVIG infusion (if be willing to accept the full financial responsibility) but since speaking to the nurse I have a feeling I will be doing at least a few of them so it is worth my while t try to get them covered by my insurance company.
So I'm off to make more phone calls.
I'd also like to mention that I was able to join some closed/secret groups on Facebook that I think will provide great resources in the coming months. Most importantly I was able to join the Reproductive Immunology Group, thanks to a nice new friend, but also a Lovenox Group and a MTHFR Group.
I need to remind myself that this is a marathon and not a sprint. I just need to stop and breathe. Having this new job has been so unbelievable when it comes to my stress level. I am very fortunate in so, so many ways even if we are enthralled with infertility challenges and now three gene mutations and an immune disorder.
Thursday, February 5, 2015
Wavering Emotions - Patient Letter from Reproductive Immunologist
I've received my patient letter. It is basically a written summary of my phone consultation with the RI. A summary of my test results, advised treatment and list of medications, supplements and if/then testing.
This lengthy letter has certainly caused a stirring of my emotions. Since getting the letter I have wavered in my confidence. I have become extremely upset, calmed down and become upset all over again. I supposed that what is upsetting to me is the uneasy/nervous feeling I have about this treatment plan actually working and if the money spent will help us acheive our goal of taking home a baby. (IVIG is quite expensive, especially if repeated every 3-4 weeks, and 100% out of pocket from what I have been told)
I guess that some of this worry has to do with the fact that my phone consultation did not end with an assuring tone. It is scary to think, after reading numerous studies, that these gene mutations can play such a significant role in RPL. At the same time I am reminded that, currently, our first problem is GETTING pregnant. THIS could be as a result of my borderline low FoxP3+ cells in my uterus. Will the IVIG help this? Blood tests will be unable to confirm whether it works simply because my blood tests were normal when my endometrial biopsy was NOT.
I guess that at the end of the day I am nervous about these compounded challenges (RPL & infertility from gene mutations and missing maternal protective immune system cells) and the lack of success stories given my specific set of challenges. I long to hear a success story from someone with the same challenges. (I tear up just typing that).
Due to the lack of success stories and unknown odds of success I wonder if we should even try. It's a tough spot to be in... It's times like this that I rely heavily on my online forums. From people that share their stories, diagnosis and treatment plan. I need to get on into that RI Facebook Group STAT! It's times like this that I wished I had more of a 'following' in this blog.
Monday, February 2, 2015
Reproductive Immunology TEST RESULTS
The results are in.
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.
Research begins.
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.
Eeeeeek.
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:
So Dr. Troubough wants to treat these findings as follows with my plan to proceed with another round of IVF:
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:
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.
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.
Research begins.
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.
Eeeeeek.
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.
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