Annnd more tests.

Just got back from the Hematologist and he basically agreed with my fertility dr that the high TNF's are the culprit. He took some more tests to look into a few more things and perhaps build a case to my insurance company to cover the IVIg shots to help suppress my immune system. If they can get that covered, that would be our best option. If they cannot, then we are looking into the intralipid/steroid option.

  We are still gathering our blood work panel for the Canadian clinic to have for our upcoming trip. I only have two more to do, husband has three. Hopefully we can get all of that done this week. I should have the results for todays labs this week as well. Hopefully things will all start coming together so we can formulate a solid plan. The estimation of when I plan to try again will be April. There just isn't enough time in March to get all of this sorted, so April should be a solid go for us.

 What a crazy ride this has been, but to finally be able to see a shed of light at the end of the tunnel is scary, but inspiring.

I like this.

Desperate times

I am in a mild panic mode as of late. After tallying up what everything will cost for all of this treatment, I am not sure how we are going to be able to swing this. I mean, the blood test of option 2 will cost $5,000 PER TREATMENT. And I have to have like at least 3! IVF costs around 15k each time. The option 3 treatment of intralipids and steroids costs like $500 per treatment - which sounds better - only I have to take that until I am well in my second trimester....so that will add up to like 15k as well. Then add in hospital bills, tests, genetics, bla bla bla bla bla. And that's even if all of this stuff will even work!!!! I see myself slowly sinking further and further into debt and I don't know what to do. I don't think I will ever be able to pull myself out after all is said and done. It will be a lifelong struggle with or without the prize of a child.

  It makes me so sad. All I want is to be a mom. And I just feel that those odds are so stacked against me right now. It really sucks. I am trying my best to remain positive...but man, it's really hard these days. :(

 I don't understand why insurance will cover the cost for a smoker to get better, but won't cover anything infertility related. It makes NO sense to me. My issues are a big deal! My immune system is on overdrive for some reason! I have three major blood clotting issues that without these tests I wouldn't have any clue about. If I don't take baby aspirin every day...I could have developed a clot and had a stroke! These tests helped me prevent all of that from happening! Yet my insurance doesn't feel it's necessary to cover!? Insane.

Decisions

So now we know what we are up against. I have a huge battle to face and several roads to take. Deciding which one is what I need to do. I spoke with my husband last night and he is willing to join me on a Canadian adventure to try and do the LIT procedure. My doctor says this procedure is 100% proven to help work and is our best shot. So I guess it's kinda a no brainer as to what we have to do. Canada is fortunately only 9 hrs away. And I would MUCH rather go there vs Mexico. So I put in an email and phone call to try and get that ball rolling. I have to determine the cost and whatnot.

  Our second thing to do is go to the Oncologist on Monday to determine what he can do for us. If he can code this in a way to where my insurance will cover the medicine, that would be fantastic! Because with both LIT and the Infusions, I think we have a great shot. (no pun intended). Nothing is set in stone and we have a lot of fears, risks, and anxiety about it all. It's pretty scary stuff. Messing with your immune system can open the doors for things you may not want. It takes a perfect cocktail of medicine to not fuck things up. I am confident in my dr.'s abilities to dose everything correctly, but it still is kind of playing with fire. Sure my immune system is in overdrive right now, but I certainly don't want to start getting illnesses and whatnot because I lowered it too much. So it's a risky thing to do.

  Another concern about this hyperactive immune system is that there may be an underlining issue going on. Rheumatoid Arthritis, Cancer, Endometriosis, some type of inflammation which could cause it to be in overdrive. Which scares me as well. I don't know, it's all so friggen crazy. I haven't been sick in 2 years and my doctor says this is why. You would think that would be a great thing, but to be honest, and I never thought I would say this, I kinda wish I would just get a cold! lol Something to tell me that my body is back to normal!

  I am trying to be optimistic about everything, but with the odds so stacked against me, it's really hard. Maybe I truly am just not meant to have kids? My sweet sister said as a last resort - I could consider her for surrogacy. Which honestly, would be my best option. But I don't want to ask that of her. I don't want to put her through all of that. On top of that, she has had to get c-sections for both of her past pregnancies which means she would have to get another one for mine. And that's just awful. So I just don't think that route is really desirable for either of us. Plus, I think her husband is a little weirded out by the idea. Can't say I blame him...but it's probably the most selfless thing to do for someone that I can think of. And I know she would do anything for me. And if the shoe was on the other foot....I would do it for her no questions asked. It's just what you do for the ones you love I suppose.

But hopefully we can get all of this sorted so it will never even come to that. I want to carry my own child. I want to experience pregnancy, I want to go through everything it requires - the good and the bad. I want to have my own kid. I just pray I can.

Lifes Lemons

    I finally had my followup with my dr. today. Can't say the news is great, but not surprising. As I determined earlier, definitely NKCell elevation going on. My bodies immune system is in hyper mode. It's attacking anything and everything it see's foreign. Which normally would be a great thing I suppose. Not when you are trying to get pregnant. My body is looking at my husbands cells as foreign and immediately attacking our embryo. Basically, I don't have a shot in hell maintaining a pregnancy right now until I get this under control. I have an appt with an Oncologist that works with my doctor regarding immunology and blood related issues. He hopefully will look at my labs and perhaps be able to code all of this a certain way to where perhaps my insurance will cover it (if he codes it unrelated to infertility). I am hoping that will happen, it will make the punch more of a slap. I am also strongly considering traveling to Canada and doing LIT as well. It's only a 9hr drive and I hear the success rates are really great. I'm willing to take that risk. So that's basically it. I am up shits creek and I have a long road ahead of me. It's financially draining and my emotions are at their peak. I don't know if all of this will even work out in the end. Right now I am very overwhelmed.

OH OH, to add insult to injury, I have yet ANOTHER blood clotting issue. Factor VIII. So lovenox will ALWAYS be in my remedies. Baby aspirin will always be apart of my daily life permanently as well. Yay.

  Here are my options. All which will cost a fortune.

Option 1: LIT. It is not FDA approved, which means I would have to travel to Mexico or Canada to seek treatment. My doctor said it will cost roughly $500 - which isn't bad...but I will have to have additional treatment as well which could be costly. LIT basically is: Lymphocyte immunotherapy involves the injection of your partner’s white blood cells into your forearm, allowing your body’s immune system to develop an antibody response to his cells. That way, when an embryo is later transferred, your body may be able to recognize it and won’t reject it. 

Option 2: Intravenous immunoglobulin (IVIg)

IVIg is made from antibodies and is usually given by intravenous drip as a treatment for immune deficiencies and autoimmune diseases.

A recent review of several clinical trials found that IVIg treatment did not increase IVF success rates. Another similar review recommended that IVIg for recurrent miscarriage should not be offered unless it is done as part of a clinical trial.

IVIg carries varied and sometimes unpredictable risks. Side effects are rare but can include headache, muscle pain, fever, chills, low back pain, thrombosis (blood clots), kidney failure and anaphylaxis (a bad reaction to the drug). 
It is also possible that, antibodies from IVIg may cross the placenta into the bloodstream of the fetus during pregnancy, where they might react against some of the baby’s cells. However, this has not been seen in practice.

Option 3: TNF-a blocking agents

Tumour necrosis factor (TNF) is a chemical produced by immune system cells, such as NK cells, which help immune cells get to the source of infections by promoting inflammation. Drugs which block the effect of TNF (known as TNF- blocking agents) are routinely used in the treatment of arthritis, asthma and other immune disorders. They stop inflammation but make the attack on infection less effective.

Several clinics offer the use of TNF- blocking agents (Enovel, Remicade and Humira). However, there are risks:

• Remicade may increase the risk of septicaemia, chronic infections such as tuberculosis, cancer of the lymphatic system, liver problems, white blood cell disorders and strong reactions to the drug..
• Medicine specialists say that Remicade should not be used in pregnancy.
• Humira is not licensed for use in implantation failure (when the embryo fails to embed itself in the lining of the womb). Its effects on reproduction and fetal development are unknown.

Intralipid infusions

Intralipid infusions are a sterile fat emulsion, containing soybean oil, egg yolk, glycerin and water, which is administered by injection.

In April 2015 the Royal College of Obstetricians and Gynaecologists said that there is no rationale for the use of intralipid infusions in fertility treatment. There are no published randomised controlled trials assessing its efficacy.’

The risks associated with the use of intralipid infusions:

• severe sepsis (also known as blood poisoning) - this is a potentially life-threatening condition in which the body’s immune system goes into overdrive. This can reduce the flow of blood to vital organs, such as the brain and heart. Three women have developed severe sepsis following administration of intravenous intralipid infusions. This is believed to be as a result of poor practice in the administration leading to contamination of the product.
• hypercoagulation – this is excessive blood clotting, which can result in blood clots forming inside blood vessels. This can be dangerous, increasing the risk of deep vein thrombosis, stroke and miscarriage.

Also - Steroids

Corticosteroids are a type of drug that can suppress immune responses, and are routinely used in the treatment of arthritis, asthma and other autoimmune disorders.

There is no proven advantage in using steroids in the first three months of pregnancy, and the risks to you and your baby outweigh any possible benefits. Medical guidelines recommend that pregnant women avoid all drugs at this stage unless they are likely to benefit your health.

A clinical trial in Canada tested the effect of giving pregnant women who had previously suffered two or more unexplained miscarriages a corticosteroid called prednisone. The study found that prednisone didn’t prevent miscarriage, and increased the risk of high blood pressure, diabetes and premature birth.


(sorry for the crazy different fonts, I copied and pasted most of that and the fonts got all screwy)

Thoughts on results

So I FINALLY got *some* of my results back. I am still waiting for 2 other panels as well as my husbands results as well. But this panel that I just received was kind of a bombshell. My nurse was nice enough to send me the report so I can do some of my own interpretations and research before my consultation with my doctor on Tues to go over everything in much greater detail. But she knows how impatient and stressed I am - so I can't thank her enough for allowing me to go ahead and do some research for peace of mind.

  With that said, through my research on good ol' google...I believe we have found our culprit. Nevermind the tests which levels came back a little out of range...my focus mainly is the TH1/TH2 results. My levels for the TNFa were INSANELY high. And after researching what that means - well as you read below - it isn't good. Basically my body is acting as if the embryo is a foreign object and getting rid of it. If what I researched is truly accurate - this would ALL MAKE SO MUCH SENSE to me. It would explain the chemical pregnancies. It would explain just so much! Because my issue was never the fact that I couldn't get pregnant - it was that it would never stick! And after every test that I've had - this would make the most sense. My body is attacking it! My immune system is through the roof! Probably would explain why I haven't even had a common cold in almost 2 years!! Not even lying!! I tried to remember the last time I was even sick! I believe it was the beginning of 2014! Crazy!

  I am not totally sure that helped play a part as to why I haven't been sick in a long time - but a hyperactive immune system would surely be a good clue as to why. Anyway...I am feeling very relieved. Not that there is something seriously wrong here - trust me - it sucks I have these issues and I hate that there are problems with my body. BUT. It gives me answers. AND. it's treatable!! I don't want to get ahead of myself here. This is only what google has told me. I can't sit here and play doctor and diagnose/treat myself. I have to wait to see what my doctor says about it all. Her professional and medical interpretation of it all. And as I feel that this is what is going on - she may surprise me with something entirely different. Could be worse news, could be positive. I will just have to wait and see on tuesday.

  Anyway, there are also some conflicting results like low NKCell count but high TNF. I'm not sure what that means or why. More questions for the dr. I suppose. Leave it to my body, I've always been a walking contradiction! lol

But for now...I am happy that at least we are getting some answers!! Answers that I truly believe will help make this nightmare go away!! I have found a newfound excitment I haven't felt in a while. Hope. I am trying to do what my nurse told me to do. Stay grounded, don't get scared/nervous/excited UNTIL you talk to the doctor. Take everything google has to say with a huge grain of salt. So I will focus on doing that. There could be a million other things that are wrong that I don't even know about. So I just have to keep waiting and talk to my doctor.

But man, I really hope and feel that we are making some ground here. I finally think we are on the right track.

Some test results (finally)

So here are some results from my autoimmune testing I recently did. I think we may have found the culprit for my losses. Please read below and I will write another post on my thoughts:

 
Test: CD-3 (Pan T-Cells) 
Normal levels: 63-86% 
My level: 90.0 (High)
What it means:
These cells are the most important in our immune system. They are low when the immune system is weak (suppressed) and normal when the immune system is healthy. Infertile patients and patients with recurrent pregnancy losses have values in the high normal range. These individuals have immune systems that are strong - even overactive. A strong overactive immune system is associated with a 5% incidence of autoimmune diseases for example, thyroiditis, lupus, rheumatoid arthritis. 

Test: CD-8 (T-Cytotoxic-Suppressors) 
Normal Levels: 17-35% 
My levels: 37.8 (High)
What it means: 
These cells are the referees of the Pan T and the T Helper interactions. They coordinate how strongly or how weakly the immune system reacts. In women with miscarriage and or infertility these cells are often on the low side. "They get tired arbitrating the hyperactive Pan T cells and the T Helpers." They are rarely high. 

CD56+ CD16+ Natural Killer Cells 
Normal Levels: 3-12% 
My Levels: 1.0 (Low)
What it means: 
Natural Killer cells of this type are produced in the bone marrow and these cells produce a chemotherapy molecule called TNF (Tumor Necrosis Factor). This molecule is involved in eliminating cancer cells that may develop in normal individuals. Tumor Necrosis Factor also causes joint damage in women with rheumatoid arthritis. These Natural Killer cells are often elevated in women with infertility and recurrent miscarriage. The Tumor Necrosis Factor produced by these cells kills the rapidly dividing cells of the embryo and placenta often resulting in IVF or GIFT failure, blighted ovum or a chemical pregnancy where the BhCG elevates slightly and then quickly returns to non-pregnant levels. Normal levels for this cell population are 3-12%. The CD 56 and the CD16 molecules on the surface of these cells are special glue (adhesion) molecules that allow the Natural Killer Cells to attach to cancer, placental and embryonic cells. Once glued to the placental cell, it sprays Tumor Necrosis Factor on the cell and kills it. 

TH1/TH2 Intracellular Cytokine Ratios:
Normal Levels: 
TNF-a:IL-10 (CD3+CD4+) 13.2-30.6
IFN-G:IL-10 (CD3+CD4+) 5.8-20.5
My levels: 
TNF-a:IL-10 (CD3+CD4+) 61.5 (High)
IFN-G:IL-10 (CD3+CD4+) 17.0 (normal)
What it means:

This is a ratio between two groups of chemicals in the body. The TH1 cytokines are defensive and include TNFα and IFNɤ. The TH2 cytokines including IL10 and others calm down the immune system and promote immune tolerance particularly during pregnancy so that the mother’s body will allow the embryos to implant and the pregnancy to be stable.

The defensive cytokines are important as well. They defend the body against bacteria, viruses and cancer changes. Normally during pregnancy, the ratio shifts towards TH2 to maintain the pregnancy. If the ratio is deviated significantly toward the defensive cytokines (TH1), the chances of conceiving become less and the risk of miscarriage becomes high. Th1 cytokine dominance will make the environment inside the uterus hostile to the embryos and the pregnancy. This damages the endometrium, and its receptivity. Additionally, it can also damage the embryos and make their chances of implantation much lower.

High TNFα can damage the eggs before they are released from the ovaries. It is imperative to bring the level down and keep it down for a couple of months before you try for pregnancy. The eggs that develop in the first two weeks of the cycle would have started to wake up from a long dormant phase over the previous two to three months, and it is important to wake up in a healthy environment to avoid the potential damage.

Increased ratio of TNFα is treated with TNFα antagonists e.g. humira in the form of two injections two weeks apart, and retest 7-10 days later. If the levels are not low enough, it is advised to have a further course of two injections. Usually it is supplemented with a second course and a drip of intralipids to boost the effect. Of course, not everyone will respond to TNFα antagonists adequately. However, the effect can be boosted with steroids and intralipids. Additionally, you might need IVIg early in pregnancy if you still have high TNFα

NK Cell testing...check!

Well yesterday my husband and I went in to get our blood taken for the NKCell assay. I guess she needed my husbands blood too so they can run ours next to each other to see how my immune system reacts with his. I had to get 7 vials of blood taken and man, what a process. I hadn't had any water to drink that morning since all I was sipping on was coffee. Well apparently it caused my blood to come out veerrryy slowly. Just dripping in one little plop at a time. That NEVER happens. Usually its like a damn waterfall! Oddly enough, same thing happened to my husband as well! Made me wonder if the girl was doing it accurately.

  Either way, we managed to get enough to send off for testing, so now we will wait til hopefully the end of this week to learn the results. I just want answers and I am praying that this will provide us with some. I am sure we are out this month to try again, since even though we will have the results at the end of this week (hopefully) we still need to go back in to see the dr. and make the gameplan. I expect I will be ovulating late this weekend (sunday or monday if it is on schedule) so I am positive that won't give us enough time to get things in order for this month. So next month we will hopefully be good to go with a new plan!

  I do know she wants me to start lovenox on day 6 of my cycle instead of after ovulation. And if my NKCells are elevated, then we will be doing steroids and other infusions as well. That medication is going to cost around 5k I believe. Hopefully my insurance will help pick up the tab, but since it's fertility related - that's highly doubtful. What's even more discouraging is who knows if it will even work! So that may be 5k I am just flushing down the toilet. Man I really need to win the lottery. I am slowly sinking and sinking further in debt. :(

  Anyway, well I will keep updating as I learn more. In the meantime, I am going to do my best to keep my head from spinning this week while I wait for the results!

Blahdeeblahblahblah

So after 4 weeks of wondering, waiting, hoping to have an answer from the tissue I submitted to the lab....the result? "Maternal Contamination". Which means, the tissue which I thought was the gestational sac, wasn't. Apparently it was my tissue and had no products of conception at all. UUUGHHHH.

  Even my nurses said they were baffled because they examined the sample before it was sent off and stated that they would have thought it was the sac too based on the size and texture of it! But...guess not.

 So all of that was for nothing. Another bill for testing piled on my back - for nothing. The only thing I have to show for ANYTHING since we have been TTC is the endless debt I have acquired. Yay me.

 So here I sit, no answers as to if my last baby was a chromosome issue or perfectly fine. We will continue on with the NK Cell testing but my doctors can't seem to give me an answer as to when I need to go in for it. Not sure if you have to be at a certain part of your cycle or not and no one will tell me one way or another!! So looks like I will call again to try to get a timeframe to begin this shit.

  Clearly you can tell I am annoyed and frustrated. This whole blog is just me being annoyed and frustrated. :(

Start of a new month

Well today I finally got my period. Now that it's here I can start preparing what this month will bring. Hopefully lots of answers and solutions! I guess I am to go in to the doctors on my day 3 to begin some tests. I think my dr. wants to retest my AMH levels, since she said they can always change. My last AMH testing was back in Sept. The numbers were great so I am hoping nothing has changed too drastically. It's always nerve wracking when you get older and you have to go in for these tests. As if aging wasn't hard enough - you have to have constant reminder tests that your eggs are too. oy.

   It would be awesome if we could get all of these tests and whatnot done so I can start trying again soon. I hate when days like today happen when I get my period and I know, that was just another egg gone. I feel like my time is just ticking right on by and each month is just another step closer to menopause! haha. Scary to think about. =/

  Anyway, I am eager to get to the bottom of everything needless to say. I am emotionally unstable as far as all of this. I am up and down all of the time. I know it's good that I was forced to wait, because I need this time to heal and prepare for the next round. Which I am doing, slowly but surely. But it would be cool if we do these tests and the doctor is like "yep, this is the problem, take this and do that and try again whenever you want!" and then boom, it works and everything is peachy! That's my perfect world. haha! But the reality is, I will have to do these tests, it may provide answers, it may not. And I will more than likely be told to wait until next month so now we are looking at March at the earliest. I just turned 37 in Dec and it is already FLYING by!!

  I also am STILLLLLL waiting for the results of the tissue sample. My God it is taking FOR-EV-ER. I called my nurse to see what the hold up was and she is going to call them today to see if she can find out what is taking so long. And hopefully they can just tell her what the results were!! So I don't know if it will be today that I will know anything - but I am confident it will be sometime this week. I will post as soon as I hear something. :)

In other news, my mom came and visited me this weekend which was nice. It's always nice to get some mom time in, especially when you are going through hard times. Nothing like the comfort of your momma. We watched a lot of movies this weekend. The Revenant, The Martian and Everest. All GREAT movies, but if I had to recommend one, The Martian is a MUST SEE!! I loved it!! The Revenant was good, a little long but Leo's acting was great. And Everest was really good too, very sad. Based on a true story which always tugs at the heartstrings a little harder. But The Martian - yeah...phenomenal!!

Ok that's enough of my movie reviews! (Sometimes you have to go a little off topic to get your mind off of things!!) ;)