I'm out.

So I had an interesting weekend. As I was 15dpo and still pulling in negatives on my tests...I pretty much gave up hope for the month. With cramps starting in and just that feeling you get when aunt flow is on her way - I decided to stop the meds and just wait for the inevitable to happen. I also decided I had deprived myself of sushi for way too long and that my body needed it. Fortunately I have an amazing husband that knows when to not say no during certain times I request it. It was very delicious.

  The next morning, I had a few tests left. I decided, I was 15dpo, my period should have started but didn't. So why not? 3 minutes later I was staring at the most faintest line. But not to the point where I am holding a flashlight to the back of the test to try and see it. I could actually just see it with my own two eyes. I sent a pic to my sister, and she too saw it. Could it be?? It was so faint that it really made me nervous if it were true. At 15dpo, you should have a pretty defined line by then. I went ahead and started back on my meds just in case.

  The next day, I retested. Again...a little faint line, but not any darker than before. Same color, hardly visible, You would totally miss it if you weren't looking hard enough for it. But nonetheless, it was there. When I went to put in my vaginal progesterone suppositories that morning, I felt my cervix while doing so just to determine if it was open or closed...and it was open. Oh here we go. Faint positives, open cervix = never good.

  So now I am faced with two things. Are these false positives, or am I about to experience yet another chemical. No more than 2 hours later...I started spotting. Cycle Day 31. Which is completely normal timing for my period. (I average between day 28-31). My other chemicals were so much different. I would have a very pronounced line from like cycle day 10-12, and then wouldn't miscarry until cycle day 35-40. So this one is a little weird. Anyway, later last night, I passed tissue. Very distinct tissue that (sorry to get graphic) but you couldn't pull it apart. I never pass tissue like that during my regular period. Another weird thing to counter that, is that my bleeding wasn't bad at all. I had some cramping, my back hurt, and I bled last night - light/medium flow. Today....virtually nothing. A little brown spotting. I am not even wearing a tampon because there is no need! Usually my periods (or miscarriage) I bleed for at least 3/4 days. 1 day of bleeding and done? So bizarre.

  I just don't know what to think. I didn't test again this morning because I felt it was kind of pointless. Obviously one of the two happened (period or miscarriage) and I certainly am not pregnant. But it was all just very strange.

  I had a moment of weakness last night as well. I broke down. After everything I have done, after everything I have tried...to end this cycle this way...just as confused as ever. I just couldn't handle it anymore. I am tired. I am emotionally drained. The ending of this cycle was like a sick joke. A gut punch finale. Pretty cruel. I told my husband that I think I have one more attempt in me. But if that too fails, I think I am done. I can't do this anymore. The waking up and taking my temp every morning, the starting of certain medications on certain cycle days, the trying to pinpoint ovulation perfectly for intralipids, the expensive intralipid shots for nothing if it doesn't work out, the timed sex that has turned more into a science project than fun, the two weeks of constant tests, waiting, lovenox injections, vaginal suppositories, steroid pills, 8 billion vitamins morning and night, watching my diet so I steer clear of inflammatory foods...etc....etc.....etc. I just can't do it much longer. I don't have much more to give. 2 years of this....I am at the end of my rope.

  So we will just wait and see what October has in store for us. Maybe that will be the golden month. Maybe not. But I am just going to try and focus on doing everything I can to keep my head from going to dark places in the midst of all of this nonsense. Keep my eye on the prize so to speak. But in the meantime, understand that we just may have to start exploring other options soon. Maybe someday this nightmare will be over.

Post op appt/Dr. Switch

Today I went to my post op appt. Everything went as I expected - no endometriosis to be found and everything looked great in there. So I can officially cross that off the list of things. So before I get started with the appt. I had quite an interesting week. I have been pounding the pavement to find a doctor to prescribe me Plaquenil. (hydroxychloroquine). ((the drug I have been wanting my specialist to prescribe to me)). I knew she wasn't going to - so I contacted my primary care doctor about it. He took a step further than my specialist would - and actually researched it for me, however, he felt he couldn't prescribe me something on the basis of what I wanted to use it for (infertility) since he knew nothing about it. Which is understandable and at least he was willing to look into it for me which I appreciated.

  So I contacted my fertility specialist again (shot in the dark) attempt and she yet again shot me down. She suggested I see a rheumatologist and that she cannot help me in getting it. Ok. FINE. So I made an appt with a rheumatologist for the 9th of August. NOW. Today I went to my post op and talked with my doctor there. He is very nice, and actually listens to me and my concerns. I told him about plaquenil and stated the reasons why I felt it would benefit me. And guess what. HE is going to prescribe it to me!!!!! On top of that - he wants to care for my issues and wants me to entrust him in my pregnancy journey. He is not an immunologist - and isn't too familiar with how it relates to pregnancy loss - HOWEVER - he isn't opposed to giving me the right medication he feels will help suppress my immune system during pregnancy. So on top of the plaquenil, I will be on a low dose steroid which my fertility dr wanted to put me on anyway. We will retest the TNF levels in a month and see where we are at.

  FINALLY I found a doctor who understands and is willing to help me!! And thinks outside the box!! I couldn't be more thrilled! So I get to start this medication tonight!!! I am not saying this is going to be my miracle drug - but it's definitely worth a shot!!! And for the steroid and plaquenil - it cost me a total of $14!!! Sure beats the $2500 per shot of IVIg if it works!! God I hope it works!! It's my last ditch effort to try and do this without breaking my bank account. Praying for miracles over here!

  Anyway, so that's the latest and greatest! I will keep you posted on how it's all going! But woooohoooooooooooooo for the Plaquenil! Finally!!!!

Post surgery

The surgery is done and boy and boy am I in pain! There is good news and bad news. I guess both is good news if you are a half glass full kind of person. I'm not. haha! The good news is that I don't have endometriosis. The bad news, is that I don't have endometriosis. I know what you're thinking....huh?! Let me explain. The point of this surgery was to find an explanation as to why my TNF is high. I was certain it had to be endometriosis. I had all of the symptoms of it and it would be an inflammation disorder which would explain so much. But it's just not the case. They did find one small little patch of discoloration tissue which he went ahead and took a biopsy of. But it wouldn't be enough to trigger this issue. And he had to reaaaallllly look for it, he said. His exact words were "everything in there looks pristine!" which is great! But wtf am I having miscarriages?! Why is my immune system being crazy if it's not endo?!?

   So basically, I am still left with no answers. Well, not true - I do have one answer...I know now it's not endo that is causing my TNF. So I can cross it off the list. And I do know now that I have truly looked into everything I can look at to figure this whole thing out. So if I go on to still miscarry - I know I have done all I could to prevent it so far.

 Where does that leave me from here? Well, I will go on to have my period this week (if it's not too messed up from surgery) and then I will go in to get my TNF levels retested. I will then decide if I need to do the IVIg and steroid treatment. My husband and I were talking, and this may seem a little wreckless, but we may just want to try again and see if the LIT would be enough to sustain the pregnancy. Either way, we are trying again in August. I have decided that I am going to go ahead regardless. I don't have much time to waste since the LIT is time crunching. And I don't want that to be for nothing.

 I will keep you updated on the progress of this month and how it all will unfold. I am bracing myself for whatever will come out of it. Whether good or bad. I know the realities and statistics and I am prepared. But I have to keep trying.

 On a side note - I have to give a shout out to my amazing husband. You never really know love until you experience someone who does anything and everything they can to help you in your time of need. I know it's what they are supposed to do. But I have never had any man be there for me the way he has. From just making me food, to helping me use the bathroom. He goes above and beyond anytime without any gripes. I am truly fortunate to have someone like him. He's quite special.

Ok that is enough for now. This upcoming month should get interesting. So stay tuned...

Testing...aggainn

Tomorrow will mark my final retesting of my NKCells and TH1/TH2 (to see if my TNFa has lowered). It's a big deal because this will lay down the bricks to see if I can TTC in July or not. I have several options based on what the results are.

1. I have an appt set up on June 29th for a consultation with a dr. regarding endometriosis. I want to see if I can get a laproscopy done to determine if I have it - and if so - to treat it. I have read that endometriosis can trigger inflammation which raises TNFa. So if I can find the culprit as to why my TNFa is being spiked - then maybe I can get it under control once and for all instead of just suppressing it with drugs. The cons of this is that the surgery always runs risks, and also - it will push our TTC time back to like Aug/Sept. Which is fine, but the LIT only lasts in your system for about 9 months. We are already on month 2 since the treatment. So I don't really have time to waste here.

2. If my TNFa is low enough to where it can be controlled/lowered with a shot of intralipids or sterioids, then maybe it can be suppressed enough to where it won't matter if endometriosis is an issue if I can keep it under control. Cons: drugs. Which I really don't like.

3. IVIg. This apparently is the best way to control TNFa. It resets your immune system and brings everything down. Con: EXPENSIVE. I really don't wish to spend $2500 per shot here. I mean, what if I get this damn shot - and I don't get pregnant right away! It's like tossing money down the toilet!!


So clearly you see my dilemmas. I have been taking so many supplements that I am PRAYING they will be good enough to knock it down the rest of the way naturally. My nightstand looks insane. I am on so many things! haha! I mean, the vitamins I have been taking knocked it down from 61.5 to 37.1 in a month. So it will definitely be interesting to see if it takes it down even further since my last test. I have also added some new ones in the mix so I am just praying they do the job!

Other than that...just have to wait and see. I really can't wait to try again. But I am nervous as all hell!! It's pretty scary stuff, but unfortunately, ya just have to grin and bear it in order to hopefully bring home that little rainbow. I have several virtual friends that I made online on my support forums that were in the same boat as me. Well, recurrent miscarriages, but different issues. But one just had a beautiful baby girl and the other is almost out of her scary 1st trimester! I am so happy for them, and hope that I will be next in line! We shall see how my cards play out....

New plans

I had my followup with my doctor last week. We went over the upcoming plans that we will need to prepare for TTC again in July. Basically, with the LIT procedure being effective, my only real obstacle that I have left is the high TNFa. I need to get that number down below 30. I have already been able to drop it down from 61.5 to 37.1 with supplements which is amazing. My doctor was really impressed - but it's not quite there. So I will keep on the supplements - even adding a few more in the cocktail - and retest everything in 2 weeks to see if there is any more improvement.

  If there is improvement - she will likely put me on intralipids to hopefully keep it down. However, she said the most effective thing to do to specifically target TNFa would be the IVIg. Which would suck because it's $2500 a shot. I feel I will have to do this regardless if it comes below 30 or not because inflammation can increase once pregnant and it can't come back up again. Sucks. '

  It's all so scary. One little thing can go wrong and boom, it's all over again. I have allowed myself 6 months to mentally prepare myself again. I gave myself a lot of time to get my mind right. While also clearly doing things to hopefully prevent it from happening again. But the thought will forever my engraved in my mind that nothing is guaranteed, and that another miscarriage is still very real and very likely. But it cannot stop me from trying again. I will do everything I can to try and prevent it. But it's just a sad fact I have to face that it just might happen again.

  Anyway, one step at a time. Right now, I am trying to eat better, exercise, and just live in the moment as best as I can. We will see where I am at in 2 weeks. From there, I will decide what the best course of action is. Baby steps. Yep. Baby steps to hopefully get baby steps one day. :)

Results!

Got some great news today! I received the results for my LIT treatment as well as my updated TNFa tests, and LIT worked!! My numbers look amazing!


                                               LIT treatment before (top) and after (bottom)

Needless to say there have been some major improvements here. I will start with the LIT. The most important aspect of this test apparently are the B-Cells IgG. Specialists say they prefer this number to be above 50% and anything less than 30% can lead to miscarriages. Clearly, mine were insanely low at 1% before the LIT treatment. Which means my body wasn't producing any protective antibodies when pregnant to help protect the embryo from my insanely active immune system. So in turn, my body was attacking the embryo and viewing it as a foreign object. Now my numbers are 99.9% which means I have developed the antibodies needed to protect the embryo for future pregnancies! Amazing news!! You can see the test went from negative to positive! So I am naturally ecstatic over these results! Those trips to Canada were not for nothing and I am excited to see if this will really be the difference we needed!


                                     TH1/TH2 (TNFa results) before (top) and afrer (bottom)

Now on to this other important test. As you can see my before numbers were off the charts high at 61.5%. They say anything above 40% can damage eggs and anything over 30% can cause miscarriage. So I have been taking the natural supplements (3 grams of omega daily, 1200mg of NAC daily, 100mg pine bark, and 600mg Reservatrol daily). I was on these supplements for probably a month before I retested and I am really happy to see that the tests came back much lower. Now it's still in the high zone...we need to get this below 30 before I can start trying again. But I feel now with neupogen or humira - that it will help get this down where it needs to be. I don't understand why my TNFa is so high to begin with. They say it can be flared by Rheumatoid Arthritis, Endometriosis, or Crohn's disease. I wouldn't be shocked if I had Endo. I have always had painful periods so it wouldn't surprise me. It also wouldn't shock me if I have Rheumatoid Arthritis. My mom has that so it very well could be inherited. Whatever it is, I am glad my body is responding well with the natural supplements. And hopefully more specific medication for this issue can knock it down under 30.

  I have my followup with my doctor on June 2nd to go over everything. I want to begin trying again in July - so we have a month to get this all situated. But I am really optimistic for the future now and eager to see if everything works. I am still staying grounded because with my history - how could I not? Nothing is guaranteed and I can't expect that these will be my golden tickets to pregnancy. But I am so excited to finally be moving in a direction!! :)

Retested...and now we wait.

So yesterday I went in to get retested for the LAD (to see if LIT worked) as well as the TNFa. Now the waiting game begins. I hate this part because I just want to know now!! But they take sooooooo long to get you the results! I am hoping it's not like last time where it almost took 2 weeks! That will be brutal. But it's done!

  The retesting kind of was a nightmare. Apparently the phlebotomist up and quit suddenly - and left my nurse high and dry doing the tests. Well she didn't know what color tubes the specific blood test was used for and we had to call the lab that runs the tests to walk her through what she needed to do with it. Naturally this kind of upset me because I don't want any hiccups with this retesting. The blood has to arrive at the lab within 24 hours - I just hope it got there in time. But I am going to try and not stress...we will just wait for the results.

So that's that. Stay tuned...

Plans

So after doing tons of research online I have come to determine that intralipids is not the best option to bring down my high TNFalpha issue. Which is what I feel strongly is the cause of my miscarriages. Apparently, intralipids work well with tackling NKCells directly - but TNF is a completely different cell - that does interact and "flare" with high nkcell activity, but is a completely different issue on it's own. The things to tackle TNF would be the IVIg injections, humira, or neupogen. I really want to do the IVIg injections. My issue is that it's super expensive. That would be AT LEAST $7500 for just 3 treatments. I am so much in debt that more money is going out then coming in...and it just keeps piling up. I hate it because I am not one to allow myself to be in such a hole financially. I pay my bills on time and like to have great credit. But this whole ordeal has just slammed me. And it's never ending it seems. Everyday I come home to a $100 bill, $400 bill, $300 bill for something. That shit adds up real quick. And I haven't even begun the super expensive treatment yet. That is just all for diagnostics.

  Fortunately my dad gave me $1300 to cover the LIT treatment which was a huge help. But that is just one of many that I need. TNF is also triggered by stress and I am not sure how I am going to control that since I am CONSTANTLY stressed. I need to find some sort of outlet to take my mind off of things and relax. I'm not a yoga person. I am a sit in a jacuzzi person. haha! Wish I had one. I did start working out yesterday and going to try to keep up on that.

  I just wish this whole nightmare would end. I am so ready for it to be over.


Restest for the LAD on May 16th to see if it worked. I guess we will figure out the complete gameplan afterwards, since we are shooting for June to try again. Yikes

2nd LIT down

Well it's finished. We just got home from our 2nd weekend in Canada in 3 weeks. We are exhausted! This month of April has been a whirlwind. Between two trips to Canada and a trip out to Cali for a friends wedding...we are more than ready to do absolutely NOTHING in May!!

So yeah, here we are now with our 2nd treatment of LIT done. My arms look like I am an OCD junkie with perfectly aligned track marks! haha

                                        

                            Yeah....so pretty, and just in time for summer! =/ (note the sarcasm)


The procedure went much like it did last time. We went in, husband got his blood drawn, we waited 3 hours, I got the injections, and then we were on our way home. I retest for the LAD test in 3 weeks to see if it made any difference. It will be very discouraging if nothing has changed on my results. I am also looking into getting the intralipids done as well soon. I have to start making the appts because I need to get this high TNF down before we can start trying again. So much crap, so little time. My brain is fried! Both with all of this crap and just from the insanity of our April traveling. It's times like these I really wish I had a jacuzzi!!

Anyway, so that's all I got for now! Will keep you posted when I go get retested! Hope everyone is well out there! xo

12 Things not to say to someone with infertility

You have no idea how many times I've heard most of these things! I know people truly mean well, but unless someone has walked in your shoes - they have NO idea. I usually take these with a grain of salt...but they truly do hurt when spoken. Just the other day my sister said to me "Some people are just not meant to have kids". That one stung like a bee and pissed me off so much.

12 Things not to say to someone with Infertility

LIT round 1 completed...

What a whirlwind weekend trip to Toronto! We got back late last night around 10pm and were exhausted! We woke up early Saturday morning around 4am and left the house around 5:30am. Toronto is about an 8 1/2 hr drive from where we live near Washington, DC. We made it to our airbnb place around 3ish and settled in. It was a very cute little place! Served us well during our stay!

Once we were settled in, I had reservations for dinner at 5:45pm in the CN Tower. What a disaster that was! Long story very short - we got to the top, I got sick and had a panic attack due to the height and revolving floor, and we left 5 minutes after we were seated. What a disaster. So that was a total bust (and pretty embarrassing too) but fortunately I have the best husband in the world and comforted me the entire time. He calmed me down and we ended up finding a nice restaurant/bar down the street from our place and ate there. It was more our speed anyway. The CN Tower was ridiculously expensive and I am sure you are paying moreso for the experience vs food. So I wasn't totally devastated about the whole situation. 

  The next day we bundled up (it was freezing up there) and decided to tour the town. Everything was within walking distance for us so we walked everywhere! It was cool to see the little shops and visit the local mall. Since it was sunday, many places were closed until like noon, so we missed a lot of things since we left early to walk around. We will note that for next time! But we did find this amazing place right on lake ontario called Amsterdam brewery and the food was amazing!! I had one of the best pizzas ever! So delicious! They brew their own beer, and I am not a beer drinker, but my husband says the beer was very good so I will just take his word for it. Below is me in front of Toronto's City Hall. The pool was frozen over! 

                                          

 After walking around much of the day sunday, a snowstorm was expected to start rolling in so we made it back home just in time for that to start up. We bundled up on the couch that evening and watched the season finale of The Walking Dead. What a great way to end a great day!! Perfect!

  The next morning we gathered all of our things and checked out of our airbnb. We headed up to the fertility clinic which was about 40 minutes north of Toronto. The clinic was very nice and clean, and everyone was super friendly. They withdrew 18 vials of blood from my husband to begin the procedure. After that, we had about 3 hrs to kill before I had to go back and have the white blood cells injected into my arms. So we went and got some breakfast, and drove around Markham, Ontario which consists of pretty much nothing. Haha. They just had residential areas and a small little strip mall. And of course, the hospital. So not much to do at all. After we killed our time, we headed back and I got my injections. OUCH. You get 4 injections in each arm and they feel like bee stings. Each one got worse and worse I felt. But the nurse did compliment that I was the "most laidback patient she'd ever had!" haha! I guess others scream, cry or squirm from the pain. I took it like a champ, even though inside I wanted to scream, cry and squirm. But my motto is, just get it over with...the more you interrupt, the longer it's going to take. So just suck it up and get it done. Here are my arms after! The swelling has gone down a lot, but man do they itch!

                                           

 The itching is supposed to get worse as well. Usually by day 3 you want to rip your skin off they say. Great. But you can't itch and you cannot use any medicine or creams to relieve the pain. I can apply a cool towel every now and then to help but thats it. She did say if it got unbearable I could take a benedryl. But I think I will just suck it up and deal with it, since I don't want to do anything to interfere with the treatment. 

  After the treatment was over, we got in the car and headed home. We got in around 10pm and I went straight to bed. I'm back at work today and I plan on relaxing for the rest of the week/weekend. My ass probably won't move from the couch much. haha! But since these next couple of weeks coming up are going to be so crazy, I don't feel guilty at all for being super lazy. I think my husband feels the same way! ;)

  Well, that's it. 1st treatment down....3 weeks we will be on to round 2. Hope this all works! Time will tell!

A positive post for once

Whenever I get on here I am either venting about something, or just received bad news. So this blog has really took a turn for the negative lately. And, yes the crap I am going through sucks no doubt...but I am not always in this negative state of mind. Which is why I decided to write a post when I am actually in a decent mood! haha!

  Things aren't really much different with me news wise. Only my amazing nurse Sarah is going to talk with my doctor about potentially administering the infusion and steroid treatments on me herself, instead of having to go through an infusion center. It would save me SO much money, since half the cost is for the nurse to come to your home and do it. She volunteered and is going to tell my doctor she really wants to do this for me as a courtesy. I really hope my doctor allows it, since they do not do that kind of thing at their office. I will know what she says later today.

  But even if she says no, it's really nice to know that someone on my medical team is batting for me. That's not just out to screw me, or take advantage of my time and money. So that really made me feel so comforted that I have someone like her that would do that for me to help me. There really are great people in this world, you just have to find them!! haha

 Anyway, we are heading to Canada this weekend. I am excited! I already booked dinner reservations in the CN Tower on our first night there. Should be really cool! I will post pictures of our trip! The procedure is on Monday the 4th. They only had an injection time for me at 2:30pm so that kinda sucks because we will be heading down back to Virginia right after the appt. So that will make for a very long day/night of driving. Fortunately my boss has been really cool about the whole thing and will let me take the next morning off if I need it.

  Speaking of my boss and nice gestures, my boss is giving me the time off to go to Canada for these procedures. Meaning - I do not have to use any of my personal days for this. How nice is that!? He knows my issues and has been very understanding with me. He's never questioned my constant doctor appts and blood draws. He's been really supportive and that's such a great thing, because with all of this mess, it really has caused me to take a lot of time from work. He has even allowed me to work overtime to help me financially. As much as I like to bitch about working, it's nice to work for people who are compassionate. I'm very lucky with that.

Anyway, like I said, today isn't bad. It's just a normal day, and most days are like this. I feel fine, (even though I started my period last night), but other than that...just another day. I wanted to post this so my readers don't think I am some manic depressed woman who is on the edge of destruction! Because I look back at some of my posts like, wow....I really was down and low that day. But most days are normal days. And most days I am fine, I am laughing, I am smiling and I just go on about my day. :)

I will try to get on here as well when I am in good spirits, vs only writing when something is wrong or I am sad. I don't want this to be the most depressing blog ever posted for people to read. That's definitely not my intentions here! Good days, bad days...we all have em! ;)

Negative

Got some VERY great news today! My retest for HTLV came back negative!!!! FINALLY something going my way!!! What a relief! Man that was nerve racking!! Going a whole week and a 1/2 wondering if you have some weird virus! As if I needed that additional stress in my life!!

  But I am so happy to receive this news today! I sent the results to the Canadian clinic so hopefully we can reschedule the LIT appts and get this train back on track! I'm bummed we wasted this weekend for nothing since I literally could be having the procedure as I type. But it is what it is. Honestly, this past weekend, I did nothing. I vegged out and completely took the time to just unwind and relax. So it really was a nice chill weekend which is exactly what I needed.

 I guess everything happens for a reason - so maybe we just weren't supposed to go this past weekend. Who knows. Anyway, I will keep you posted on when I reschedule my appt!

Today is a good day! :)

***UPDATE***

I rescheduled my LIT appts. My first round will be on April 4th, and the second round will be April 25th. Once that is done I have to wait 3 weeks to retest the LAD and see if it worked. Fingers crossed!

LIT cancelled.

Unfortunately, my LIT appointment has been postponed until further notice. One of the required test results that I had to do for the procedure came back "indeterminate" for a particular virus HTLV. It means that I may or may not have this virus. Which, if I did, would be utterly insane. But I am thinking this has got to be just a mistake. I don't know anymore.

  Yesterday hit me like a ton of bricks. Everything I was hoping to try to get done that made me hopeful for my future, came crumbling down in an instant. My entire Canadian trip for this weekend has now been cancelled due to this. I go in to get retested tomorrow. If it comes back ok - I can proceed at least with the LIT. If not, well, looks like I'm up shits creek.

  Maybe this just isn't meant to be. Maybe it's just not in the cards for me. I am so tired. I am physically and emotionally drained. I don't think I have much gas left in my tank to continue this nightmare. I just feel like it doesn't end.

Insurance shmimshurance

I just got off the phone with my Blood specialist dr. who was to try and build a case for me to submit to my insurance to see if they will cover the IVIg treatments I need to help bring down my high TNF. Guess my results didn't provide much of a case because they just informed me that my insurance will not cover it.

  Warning: I am about to use a lot of curse words after this message.

Why the FUCK is it acceptable that insurance companies feel infertility is not a medical necessity!? I have serious fucking issues going on that can lead to a plethora of other serious medical issues beyond infertility - but throw that fucking word in the mix and it's an instant NOPE. Sorry bout your bad luck there, missy!

  So smokers and fucking people who ate krispy kreme donuts all of their life can get coverage for their poor health conditions after their poor life choices - but a woman who is trying to have a baby but can't because her body is being an asshole cannot?!? I simply do not get it!! I have 3 blood clotting factors!! I have a hyper-immune system that is being triggered by SOMETHING going on internally - that is also attacking my embryos! But nope - not important apparently!!

I fucking hate this stupid system. It doesn't give a shit about you. I put so much money out of my pay for insurance - and when I really need it - I'm denied!!! Fuck that shit.


end rant.

Ok I'm sorry I got a little foul mouthed there. I am just so irritated at this entire situation! I feel I cannot catch a friggen break here!! I'm about ready to throw in the damn towel and just go through life childless because I can't afford to treat my internal issues to have one.

Thanks a lot, health system! Assholes.

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.

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)

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!