Memory tattoos and a Happy Ava

Hey there everyone! I know I haven't posted in this blog since I had Ava, but I didn't want to turn it into a baby blog. I want it strictly to be used as a resource for those who are still on their journeys. But I figured I would do this post because I was once asked if I was ever going to do a memory tattoo of the little ones that we lost before Ava.

  At first I was hesitant to do anything like that, as it would have been too much of a painful reminder. But I am in a different place now, and I felt that I was ready to fully let out all of those emotions and honor our 5 lost babies as well as Ava in a loving tattoo. So last saturday, we did just that. And here it is:

Keep in mind these were very freshly done so that is why there are still speckles of blood on them. But here they are and we love them! They mean so much to us! Maple leaves to honor Canada, which we credit so much to help bring Ava into our lives by allowing us to come into their country and giving us the LIT Therapy treatment. I truly feel that was the key that opened the door for us.

Obviously 5 hollow hearts to honor the 5 little ones that came and went before her. I will never forget them, and think about them all of the time. What gender were they? Would they have looked like me, or Brian? What would their personality have been like? How old would they have been now? Not a day passes that I don't think about those questions. So these five hearts represent them and the holes in my heart from losing them.

 And finally, a heart in the middle with an A obviously for Ava. Our world. Our beautiful, happy, smart, energetic, loving, sweet, bright eyed little girl. She has changed me, and changed our world so much. I never knew I could love something so much. Every ounce of my being bursts with love for her. She is just the cutest thing in the world. I am so happy we got these tattoos. I feel that the chapter has finally closed on our journey and we are actually finally able to just live!

 Ava will be 8 months tomorrow. 8 MONTHS!! When they say time flies...I mean...it literally FLIES. Within a blink of an eye! I try to cherish every single second with her. I don't want to rush her growing. I love to see her learn and do new things, but on the flipside of that....I'm like STOP GROWING!!! haha. She is starting to crawl, has 4 top teeth and two bottom teeth, her hair is getting longer and her eyes may stay blue. She is such a joy in our hearts.

 Here are some recent pictures!

Such a little model!! 

Anyway, that's all I am going to post on here. Like I said, I just wanted to drop in and share our tattoos since I think it's important for those still on their journey who were questioning how to honor their struggles. I didn't know how, and I didn't think I wanted to remember. But in the end - don't be afraid of the past. The past is what leads you to your future. It's what makes you who you are. It has made me stronger than I ever felt imaginable. 

Again, good luck to you all. Never give up. Your rainbow is waiting for you!! 

July 15th 2017

Sorry I haven't updated in a while - been a little busy with this new precious baby of ours. On July 13th around 12:00pm - I went to the restroom at work. I noticed after using the restroom - I continued to leak. I thought to myself "am I still peeing??" and then that quickly changed to excitement/panic when I realized, no...this was my water breaking. I was going into labor!!

 I hurried out of the bathroom and got back to my office where I was greeted by about 15 of my co-workers, all waiting on me to take me out to lunch for my 5 year work anniversary. I quickly told them that there had been a change of plans and that I needed someone to drive me to the hospital, stat. The look of panic on THEIR faces was priceless! So from there, my coworker rushed me to the hospital. I contacted my husband and family along the way and put everyone on alert that our little rainbow was about to come.

  Once at the hospital, I was quickly checked in and brought to the delivery room. My husband finally arrived and we waited on the doctor. Everyone then started to show up, my cheerleaders I should say. My mom, mother in law, sister in law and my sister who drove all the way up from NC to be with me was there. As we waited and waited and waited - I was leaking more and more fluid. I couldn't believe how much I lost - yet still no doctor. I wasn't even seen until 2 hours after checking in. Crazy. They tell you once your water breaks - it could happen anywhere from 1 - 6 hours later. Well, that wasn't the case for me. I wasn't even having contractions really. Finally my doctor came in, but really just to tell me that everything sounded fine on the monitors - but they weren't going to check my cervix until later since I wasn't having many contractions.

  The doctor finally came back to my room around 9pm to check my cervix for the first time. They don't like to do it very often after your water breaks because it can increase the risk of infection. But we needed to see where I stood. And I only stood at 1/2 cm dilated. Crazy! Immediately we knew - we were in for a loooooooong night. Everyone went home to rest that evening because we knew baby wasn't coming until the next day.

  July 14th came and not much action from there. I was checked again and they inserted a balloon into my cervix to help with dilation since I was only 3cm from the night before. That began a grueling long day. From the balloon, to only getting to 6cm by 4pm I felt it was never going to happen. They gave me some Pitocin and the epidural around 5pm since my contractions started to pick up a bit and boy were they painful. I was happy in a way that labor was taking a little while longer since I still had the lovenox blood thinner in my system and they won't give you an epidural if you have that - as it can lead to paralysis. So fortunately - I was in labor long enough to where they were ok giving me the epidural. I don't know what I would have done if I had to do that naturally. I don't know how people can do that. More power to them - but give me the drugs please.

 Anyway - once the epidural kicked in I felt instantly better. Of course - I was numb from the waist down so no pain whatsoever. haha. They put in a catheter for obvious reasons so it was actually nice to not have to worry about getting up at all. They did flip me over after every 20 mins. I will never take the use of my legs for granted though. It really was an eye opener not having use of them for a night. Anyway, as the night progressed - my contractions started getting stronger. (well I only felt pressure - no pain). By 9pm my cervix was dilated to about 8cm so we were on our way but still not there. By then my cheerleading squad was losing steam and most went home except for my sister in law. She was about to leave around midnight but decided to wait until the doctor came in which was any minute to see my progress. At midnight - I was 10cm and it was go time.

  So my sister in law went to the waiting room and everyone came in to prep for delivery. After 45 mins of prep - we started to push. My husband and the nurse both grabbed a thigh and I pushed 3 times during each contraction.

   This went on for an hour and a half and at 2:59am our little Ava Leigh Thomas made her debut to the world. My husband watched the entire thing which I couldn't believe. Ava weighed 6lbs 2oz and was 19inches long. She is very healthy and is stunningly beautiful with a full head of black hair. Our hearts just filled up with this intense love that I can't even possibly describe. She is perfect. Just absolutely perfect in every single way.

  So that is it. Our journey is over. Our struggle has ended. We got our beautiful rainbow baby that we had longed for, for so long. With every tear, heartbreak, fear and hope...we finally are able to close this chapter of our lives and begin the new one we had desired for so long. I never thought I would be here, typing this. As a new mother. But here I am! She is sleeping next to me in her bassinet and it's the most amazing feeling in the world.

  For those of you who are reading this, who are going through the horrible struggle of recurring miscarriages and infertility. Please, please, please never give up. Do as much research as you can, be your own advocate. Never settle for anything less than what you feel is right. If a doctor tells you no - find one who will tell you yes. Find one that listens. One that will work with you and not just the standard protocol treatments they know of. There is always an answer. There is always a way. Even if it seems hopeless. I felt my situation was hopeless...but I didn't give up. And I am so glad I didn't. My heart is with you all. It's a club I never wanted to be a part of - but the women I have met along the way gave me so much inspiration - that I only hope my story offers the same to those who are still on their journeys. This blog will always remain open to those who are seeking out answers, who need something to relate to, to gain tips for their own treatments or just in need of a little inspiration. I am always here to answer questions or offer my own advice for you. Be strong, be brave and good luck to you all. <3

 

New Month

Started my period today. Gonna brush off last month and start this one with a positive outlook. November marks the 2 year anniversary of this very long journey of ours. 2 years in a row - I have successfully conceived in November (even though they didn't stick around). So hopefully I can shoot for 3 and it will actually stick around this time! :)

                                    Crazy it's been 2 years now. What a crazy ride it's been.

Sadness

Well, another month gone, and still nothing. I am just still waiting for my period to start and the wait is absolutely brutal. Because it plays tricks on your mind. You think - well there could still be a small chance I am...but as the days progress, and the negative tests still come, hope just fades away.

  Being in this situation is hard. It's hard to constantly swallow this pill month after month - as you watch others lives progress in ways you thought yours would. A new birth announcement, "it's a girl/boy" posts, "I'm pregnant" posts...baby bump posts. Kids halloween costume posts. My daughter said the cutest thing posts. "I took my kids to the pumpkin patch" posts. Everything stings. It all weighs heavily on me. And that sucks, because nobody is doing anything wrong. This is my own personal hell.

  Putting on a brave face day in and day out. Trying to be strong and happy, meanwhile I am slowly crumbling inside. I know I am in a funk right now, simply because another month is over and I have nothing to show for it. So this is me just being emotional over it all. But the simple fact of the matter is, I am sad. And I am just tired. I wish I could finally wake from this never ending nightmare. All I wanted was to start a family. Why is it so easy for some, yet impossible for others? I'll never make sense of this.

Another waiting post.

Still not sure when/if I ovulated this month which is a sucky feeling because I have no clue if the things I am doing are timed accordingly. The only time this has happened was in November 2015 - and funny enough - I got pregnant that cycle. So perhaps just going with the flow and not so focused on how many days past ovulation I am might be a good thing. Less stress and worry perhaps? Not being like "I'm 11dpo...I should be seeing something on these tests by now!!" haha! This month I just have to really wait and see. Who knows. I am so tired of dealing with all of this anyway, that I am at the point of whatever.

  Another thing I have decided is that if this doesn't happen again this month - next month I am not going to do intralipids at ovulation. I don't know how that will play out - but I cannot keep throwing down $450 for a) something I cannot time accurately enough and b) something I cannot afford to do on a monthly basis when I am not getting pregnant anyway. If I could have a nurse on standby it would be one thing - but I HAD to get my intralipids done on Friday because they don't do late visits, or short notice visits. And weekend visits cost extra. So I was forced to do this on a friday when I wasn't even sure when I was going to O this month. And it's only effective for 2 days before ovulation. I just can't keep taking chances like that financially. This month - if I didn't ovulate over the weekend - that was $450 down the toilet again for nothing. And if I didn't get pregnant this month - still $450 down the toilet. It's just too much. So I have decided I will just schedule an intralipid shot if I get a positive pregnancy test and hopefully that will be effective enough. But who knows anymore. I just can't keep digging myself further into debt for nothing.

 All of this has become such a pain in the ass. I once thought having a baby, and trying for a baby was going to be so much fun and so exciting! I never thought in my wildest dreams I would be living this nightmare for 2 years now. And I don't feel any closer to an end than I was 2 years ago. :(

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...

Retesting

So I got these supplements that I wanted to take for a bit to help bring down my TNFa, so I was going to push my retests back to the 24th of may to give them some time to maybe take effect in my system before I retested everything, but as it always goes - my doctor will be going on vacation the last week of may/first week of June...so now I need to stick with the original plan of testing on the 16th. Which kind of sucks because now I will not be able to tell if these pills are really benefiting me or not.

  And I cannot wait til she comes back because if our plans are to try again in June - then I need to get all of this taken care of before I ovulate again around the 9th. Bummaz. I have been taking the supplements for a week now, so maybe they did SOMETHING to help bring it down. haha...doubtful. I just know I am going to have to take some risky ass shit like Humira or neupogen to get that level down and I really don't want to take those. They apparently give you a higher risk of developing cancer later on because it messes with your bone marrow. Not something you should really f$ck with if you ask my humble opinion.

  I am trying to not stress, I am working out, I am attempting to eat better (still have lots of work to do on that lol) and I have been OD'ing on vitamins and supplements especially Omega 3 which I am hoping will help lower my TNFa as well. I am also EXTREMELY nervous to see if the LIT worked or not. But again, trying not to stress or worry - because those things trigger my TNFa as well. Man I can't do anything these days!!!

  Well I am just going to have to have the mentality of "whatever will be will be" because as much as I am trying to control this situation...there is only so much I can do. If my body is just simply not on board with all of this...I can't change that. So I have to learn to go with the flow and accept the outcomes as they come. (Again...so much easier said than done). But I'm tryin!

 So monday will come. I will retest. Then a weeks agony of waiting for the results and harassing my nurses for them, then my appt with my dr to see where we stand. As always, will keep you updated! :)

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.

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)

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