Wednesday, November 30, 2016

Betas

Just received my 4th beta results and it's increased from 808 to 1497! Great news most definitely! I am still on pins and needles and taking it one day at a time. I have an ultrasound scheduled for the 6th as well. They want me to do ANOTHER beta test on Friday which I feel is just a bit ridiculous! These places I feel like to milk that insurance $$ whenever possible. On top of that - they stress me the f$%k out!!! I don't need that stress anymore if my numbers are going up or down! It's excruciating to sit and wait for the results all day not knowing if this is going to progress or not! Pure torture! I hate that I have to go in AGAIN...but what can I do. Ugh.

Anyway, good news still! Keep those prayers up!! Grow baby grow!

Monday, November 28, 2016

Updates!

I have some good updates and some not so good updates. First off, with the good! I went in for my third beta today and it is at 808!! That is excellent and they are rising perfectly! ALSO - the brown spotting has stopped since last friday! My doctor thinks perhaps it was implantation bleeding or progesterone. So alllll is good so far! I am 4 weeks and 2 days today - so this week is insanely crucial as I have never passed the 5 week mark except once.

  The bad...I got my follow up NK results and looks like my levels are still elevated. My doctor really wants me to do IVIg but I just cannot afford that! I have also done a lot of research as of late regarding NK cells/high tnf and I have learned that NK cells need to be determined through uterine scraping/ not by bloodwork. Because everyone has NK cells in their blood - it's normal! Anyway - without getting into too much depth with it all - I am not really convinced that the NK assay tests I've been doing are proving much. I tweeted to Dr. Braverman on twitter - and he actually responded to me. He stated if the levels are not done by serum - they are worthless. He said intracellular tests show and prove nothing. So I am at a loss. But after researching other women in the same boat as I am - they seem to get along fine with just a higher dose of prednisone. So I asked my doctor to up the dosage to 40mg a day. Which she agreed.

  So I will take 40mg a day to hopefully keep things suppressed enough to not interfere with anything. And by the grace of God - it will work. I am no doctor - and I could be taking a huge risk with all of this by "self diagnosing and self treating" myself through my own private research. But I just am not comfortable doing a blood transfusion treatment that costs a ridiculous amount of money and isn't guaranteed 100% to even work!! Maybe I am wrong - and if all goes wrong - I will give it a go next time. But I am praying in my gut that I am making the right choice by sticking with the treatment plan I am currently on - and by upping the steroid dosage. I guess we will see.

But enough of all that....I am taking this one day at a time. And today, things are POSITIVE. 808!!! Grow baby grow!!!!!

Thursday, November 24, 2016

Brown Spotting

Well, today I woke up with brown discharge, which is the way all of my miscarriages always start out. So needless to say, I'm preparing for my 6th loss. I really have nothing really to say, other than I am obviously disheartened and gutted that I have to face this yet again - as well as knowing that none of the things I have done to prevent this has worked. I know it ain't over til it's over...but I'm bracing for impact. Whats worse is I purchased another round of intralipids which I was supposed to have tomorrow - so there is $450 down the drain. FML.

Anyway, will keep you updated as the days progress.

Happy Thanksgiving. :(

Wednesday, November 23, 2016

Doubling

Just got The results from my second beta and it's doubled from 19.5 to 57! I just scheduled my second round of intralipids for friday! Still a long way to go but I will take any positives that will come my way so regardless of what tomorrow will bring - today is a good day. :)

Tuesday, November 22, 2016

Betas

My beta is at 19.5 as of yesterday. Definitely pregnant. Now I go in tomorrow to see if it's doubling. That's the important factor. Last time I did this it started at 23 and only went to 24 after two days. So naturally, I am nervous.

 I have a certain peace about it in a way though. I guess it comes after going through this for so many times. The peace is, I have no control over what will happen. It will either be or it won't be. It's out of my hands at this point. I have done so much already to try and change the outcome and if it still doesn't work out - then I won't give up, but I will leave it knowing I am doing everything in my power to make it work. It's all I can do, so I am ok with that.

  I will update tomorrow when I get my beta results. :)

Monday, November 21, 2016

Round 6!

So this happened over the weekend! 



Top is 8dpo and bottom is 9dpo. 


I am almost certain my days past ovulation is accurate because of my temp spike and positive opk before it spiked - but a line like this, this early? Well I am hoping that is a really good sign! I was feeling quite dizzy over the weekend and thought maybe I was having a reaction to the steroids since I up the dosage - but then I remembered the one that stuck the longest (8wks) I got a positive around 8dpo and felt dizzy too, so I went ahead and tested. I am glad I did - because the sooner I know the better. 

  I am now waiting for my doctors office to open so I can hopefully run over there to confirm it all with a blood test - then set up an intralipid session perhaps tomorrow. I am so torn between the ivig and intralipids...I don't know what to do - but I am leaning towards intralipids more. I don't know if it's the right choice - but I guess it's just a wait and see thing. If it doesn't work out - next time I am going to go in guns blazing. Ivig, humira, the whole shabang. I wish I kinda did that this time around - because the thought of losing another right now is gut wrenching. I really thought the hydroxychloroquine would have brought everything where it needed to be by now - but that doesn't seem to be the case. I am going to speak to my other doctor about perhaps uping the dosage on that too if this doesn't work out.

  I hate saying "if this doesn't work out" but it's a sad potential reality I have to face. I have been through this song and dance 5 times now, and as I am optimistic that the things I have done will hopefully make some sort of difference this time - I have to brace myself as well. I am not telling anyone but my husband and my sister. None of my close family members or friends reads this anyway (except virtual friends I made on forums and perhaps Tamera, hi Tamera! shhhhhh!!!) haha! So I don't have to really worry about writing here and word getting out. 

But for now and with that said - today I am pregnant! God bless this little bean, for however long it may be. <3












Friday, November 18, 2016

6 DPO

So I didn't take any progesterone medication this cycle as of yet, because I wanted to see what my natural progesterone levels were like - and they look good. At 6dpo it's at 12.6! My doctor says she likes anything above 7 - but anything over 10 confirms ovulation! So I definitely ovulated this month! I also tried to time things perfectly, so I am hoping that things will be ok this cycle and I will have some news in the next coming days when I start testing again. I am going to put myself on the progesterone tonight - even though my levels are decent. But I am going to lower the dosage to 400mg instead of 600mg. That way it's there - just not overdone.

 I bumped my prednisone to 25mg a day, still on hydroxychloroquine, and will schedule another round of Intralipids pending a positive pregnancy test. I contemplated on doing the IVIg this cycle - but after some research, I've decided that I am going to stick with the protocol I am on and hope it will be enough to suppress things accordingly. If shit goes south and I miscarry again...next month I will do the IVIg. I will be broke when all is said and done - but it will be the last thing I haven't tried. I am hoping it won't come to that - but after the hell I've been through...I'm bracing for the worst. I don't like to be that way...and don't get me wrong - I am hopeful...but prepared. It's all you can do in a situation like this. 

 Anyway, stay tuned for upcoming status posts as I walk on through this two week wait. :)

Friday, November 11, 2016

Results.


****Update: I spoke with my dr. and she is going to up the ante to 20mg of prednisone daily. So that should hopefully help with the inflammation. She also again advised I do the IVIg treatment pending a positive preg test. I am considering it. I just don't want to fuck around this time. I am tired of going through this crap month after month. So I may just suck it up, go into debt and see if it makes a difference or not. We will see****



Well, not the news I was hoping to hear. Got my TNF results in and my levels are still up.

TNF: 37.0
IFN: 23.4

My IFN level is up too, so I don't know what that means. Guess more inflammation for me, yay.

This is why I didn't want to retest, because these levels stress me out. I wrote my doctor letting her know the results (I called the lab this morning to see if they were in). I know she probably is so irritated with me that I do my own work when it comes to this. But honestly, she should be happy - I'm essentially doing her job! lol. I do all of the research/work and she just authorizes the medication. If I sat and waited around for them to contact me with the results - I would be waiting until next week. My old nurse sarah would be kind enough to email me the results once they came in...but she no longer works in that office. Now I have a bitch nurse I have to deal with that won't do those things. I have to come into the office and meet with the dr. to discuss things I already know - on top of paying a $40 co pay. It's bullshit and I am really getting fed up with this office.

Anyway, hopefully my doctor will respond and give me a higher dosage of prenisone. Hopefully that will help with the inflammation issues I clearly have. I am really bummed that I have been on the hydroxychloroquine for 3 months now and it hasn't lowered my TNF yet. I was really hoping that this drug would be my cure for that - and to spare me more aggressive treatment such as humira (which I am not thrilled about taking since it can open the door for cancers and such) as well as the super expensive IVIg treatment. But now I'm thinking I might not be able to get off the hook with that.

  Anyway...I should be ovulating tonight. I got my round of Intralipids yesterday and I think I timed it perfectly this time around. We have been DTD all week and will go again tonight on onward until I am sure I ovulated. No messing around this cycle.

If I do happen to get pregnant and still miscarry - it's off to see Dr. Braverman, Reproductive Immunologist in NY. He is the top Immunologist in the country and many people across the world go to him. NY isn't too far away and it will be worth it to work with someone who claims to have an 80% success rate. I am eager to get this sorted and after a year of trying with my doctor - shit just isn't working with her. Well - maybe it will - it's to be determined how this month goes still. But if not...buh bye to her and that practice.

Anyway - tick tock goes the clock....hopefully this month will be our month and will be the start of a new beginning for us. I am going to keep positive despite the bad news of the levels today. Stress doesn't help matters...so I am going to try my best to not stress out. Easier said than done...

Monday, November 7, 2016

It's that time of month again

So I have had so many thoughts and feelings these past couple of weeks and I am not sure about anything anymore. What I do know is, I am about to ovulate any day now. What I am not sure about is all of the steps I'm taking to ensure this one sticks. And I simply just don't like my REI doctor anymore. It sucks because there are very few immunology doctors in my area. And I feel like if I find a new doctor at this stage - I'm essentially starting over. Back to square 1. And I just don't know if I have the head for that. BUT. If I do miscarry again - I am finding a new doctor. Period.

 So here are my concerns.

1. Prednisone. I have read from many other women on my immunes forum that their doctors start them on at least 20mg of Prednisone from the day after ovulation until you get a positive pregnancy test. The reason they start the day after ovulation, is that there is a possibility that the steroid can interfere with ovulation. I started prednisone on cycle day 7 as my doctors instructions and these past two months have failed to conceive. I'm not entirely blaming the prednisone - I'm simply saying it hasn't happened while ON the prednisone. So who knows. I am going to go ahead and start AFTER ovulation, and hopefully I can ovulate naturally without any interruptions. I also questioned her today on being on such a low dose when others start on higher dosages. She stated that it all depends on my TNF levels and if they came down or not. Never once did she insist I have them retested to ensure my dosage of prednisone would be enough to be effective or not. So I am thinking the dosage would be - and now it may be too low to even matter. Very annoying. So now I am going in tomorrow to get my TNF level retested - and since it will be on a tuesday - my results probably won't be in til next week. I ovulate this week and need to start prenisone asap after ovulation. So who knows if the dosage is going to be enough - and I won't know that until I get those results. It's pretty shitty that I have to do all of this research, then approach my findings to my doctor for her to say "oh yeah, you need those levels retested before we can determine dosage"...she just automatically gave me a dose and didn't question further if it was even going to be enough!!! Highly irritated about that.

2. Progesterone. These past two months, I have passed a very large clot of tissue when I got my period. This never happened before and the only time I've passed tissue like that, is when I miscarried. I know for certain I wasn't pregnant - and still passed this tissue. So I looked it up and turns out if your lining is too thick, and can cause you to shed your lining at once. It's called a "decidual cast" and it basically comes out like the lining of your uterus. Pretty effing gross. This can happen with miscarriage, but can also happen with hormones. I never felt I had a progesterone issue. My periods were always like clockwork 28 days, 5 days of bleeding, ovulation normally at 14 days. Textbook cycles. Also whenever I would have scans - my lining would always be nice and thick...perfect. But my doctor wanted to put me on 600mg of progesterone after ovulation as a "just in case". Since then, every month these past two months I have passed these enormous clots of tissue. It also makes me wonder if that is why I haven't conceived as well. If the lining is way too thick - the baby can't implant. So that is just another thing I am changing this cycle. I am not starting progesterone after ovulation. I have decided I will go in on a day 7 past ovulation scan to check the lining of my uterus to make sure it is at the thickness it needs to be at and that my levels are good. If they aren't - I will then take the progesterone. But I am definitely skipping it this time around and going natural.

3. Intralipids. Last month I decided I wasn't going to do this until a positive test. Well I changed my mind and I am giving it one more go this month. I should ovulate during this week and not on a weekend so it should be easier to time a nurse accordingly. I just don't want to have any regrets on that if I do end up pregnant this month - I want to be sure I did the intralipids because they are important in this mess.

  So there you have it. I am not sure if taking matters into my own hands is a smart idea or not. I don't even know if all of this - whether I follow my doctors protocol or my own will make a difference regardless. I honestly feel I am still not being aggressive enough deep down. I feel that the things I am doing are just not going to cut it. But we will see. I have done so much research on this stuff just so I can get a better understanding with what is going on with me. I found about hydroxychloroquine which I have been on for 3 months. My doctor didn't want to prescribe that to me. I had to do it on my own and find a doctor who would listen. So I feel, when it comes to your health and your body, sometimes you have to take matters into your own hands. I am just another patient. I am nobody special to her. I am a dime a dozen in her waiting room. She doesn't truly care about my well being. I'm not saying she doesn't care - Im saying she doesn't care to the extent that I care. So that is why I need to follow my gut and do what I feel is right. Hell, I've done so much research sometimes I feel like I could be the damn doctor!

  Anyway, If I do miscarry again. I am dropping my doctor - and going a very hardcore route. I will make an appt with the top reproductive immunologist in the country - Dr. Braverman. And I will see what he can do for us. He states that 80% of his patients leave with a baby. He will be my last hope here. He is very expensive...but if I can just get and stay pregnant - it will all be worth it.