Friday, December 30, 2011

5 Weeks 3 Days

First off, I would just like to thank everyone for the outpouring of support over the past week. A lot of you have sent me private emails, commented on my posts or even sent me a texts (my infertility friends). I, however, have been in "hiding" over the past weeks and have been doing everything I can to avoid facing what is going on. Over the next few days I will be responding to everyone and also catching up on the blogs that I follow. Thanks so much for understanding!!

Anyway...this morning we had our second ultrasound and this was the ultrasound that would determine if our pregnancy is progressing or if it was a blighted ovum or even a pseudo sac caused by an ectopic. When the nurse went to start the scan, I immediately looked away as I couldn't stand the possibility of disappointment. As I turned my head I could see a large black dot out of the corner of my eye. When I finally got the courage to look at the screen I saw a black circle...nothing in it. It was bigger than what it was on Monday, but empty. She moved the wand a bit to the right and BAM, there was the most perfect yolk sac. Thank God!! Everything was measuring almost perfect to the day and things are progressing nicely. I go back a week from today (or sooner if I freak out) for my next ultrasound to see the heartbeat. I am still nervous, but much more optimistic at this point.

I called my local medical center today to setup my first OB appointment as they have a satellite office about 15 minutes from my house. When I called they took some basic background information. They said that since I was being referred to the MFM group as I have been designated "high risk" that I will not be seeing a regular OB so I will have to go directly to the medical center to be seen. They said that with my history that the MFM doc will be the only one following me as they don't like to coordinate treatment with other OBs...even their own. In a way this is quite the relief to me as I know that I will get the best care possible and will be followed much more closely than a normal pregnancy. They told me that they will contact me either Thursday or Friday of next week to setup my first appointment. I am not sure how often I will be seen but I know that it won't be nearly enough for my liking!! I guess it's time to realize that I can't control this pregnancy and learn to have some faith in others...maybe.

Monday, December 26, 2011

Christmas Miracle???

All this weekend I kept reading Dr. Braverman's emails over and over. I tried my best not to be overly negative about things but I was preparing for the worst. I knew it wasn't good as my husband even had a few moments of tears...and if he cries, there is something wrong. The brown spotting that I had completely ended Friday night and was replaced by a creamy type substance. I was happy the spotting stopped but confused by this new stuff. I started thinking about what a FET would entail and started obsessing about how long I would have to wait if I needed a D&C or Methotrexate. Last night when I realized that I only had twelve hours until my appointment today, I was both scared but relieved as this hellish wait would soon be over.

Before we left for the clinic this morning I felt the need to do a few last minute things. A special couple gave me a pair of fertility socks last year. They are actually the ones that they wore for their last IVF (cycle #5) that resulted in their beautiful daughter. I wore them in the past but since my cycles still resulted in losses, I gave up. So I, out of the blue, decided to put those on and I also grabbed my Babci's gold "K" necklace that I inherited after she passed. This necklace is something that she wore everyday of her life and looking at it brings me great comfort. On our drive to the clinic I just kept saying to my husband that we would get through this and, just like before, we will move forward and keep trying. Once I got to my clinic that positive attitude went to the wayside and I immediately became nauseous and had all I could do to hold back my tears. As soon as I was called back into the examine room all of my emotions poured out of me. I couldn't stop thinking how unfair this was, how I wanted THIS pregnancy to work, and how I was dreading the complications related to a loss. The nurse said that since I was only 4wks6days, even if this was a normal pregnancy, that it would be unlikely that we would see anything...that and given that my HCG was only 401 on Friday. She immediately starting measuring my uterus and right away I could tell that there wasn't anything. She measured my ovaries next and they looked good. She then focused on my uterus and my lining came into plain view, nice and fluffy and thick...with a little gestational sac in the middle!! There it was, this little tiny black circle, round and perfect. The nurse was VERY surprised to see this! Since my HCG was only 401 on Friday, obviously we had a bit of an increase as generally you can't see anything on ultrasound unless your HCG is 1000 or higher but sometimes the sac will show around 800-900. Dr. Braverman said that we needed a big jump in my HCG in order to show that "vanishing twin/triplet" was a possibility. The nurse told me that as soon as my numbers are up she would call me. I was much calmer now that I had seen a sac but very nervous about having an appropriate increase in my HCG. My husband and I decided to go to Target to get some clearance Christmas stuff, and while I was grabbing some cheap wrapping paper, my phone rang. As soon as I picked up I could hear the nurse laughing and I knew she wasn't calling me with bad news. My progesterone was still >40 and my HCG increased to 1466.1!!! That is a doubling time of 38 hours which is more than perfect!! The nurse offered to bring me back in on Wednesday but I asked if I could just come on Friday instead. Right now everything looks good and I need to stop analyzing my numbers. HCG levels slow down once they exceed 1600 so I don't even care about my numbers anymore, all I care about is what we see on the ultrasound. I immediately emailed Dr. Braverman and he responded back that he was "thrilled"!

We are no where near out of the woods yet and we still need to see a yolk, fetal pole, and a heartbeat. I am still nervous but I am holding on to hope now as this outcome today was very unexpected by me. After all the shit that has gone wrong over the past 2 1/2 years, how could this situation turn into anything good?? Well it did!!

Thanks to everyone who responded to my posts or sent me a private message over the past few days. It really means a lot to me and really helps me to keep the faith alive. Keep the prayers coming!!

Saturday, December 24, 2011

Looking for Strength

Today is Christmas Eve and I really don't know how I am going to get through the day. How am I supposed to go about our planned festivities and act happy and joyful, when I am not? For the first time ever in my life I just want Christmas to be over. This year I wish it didn't exist. Christmas is supposed to be about hope and faith. Tell me this, how the hell am I supposed to have hope and faith when God (used very loosely) doesn't even give me the chance to experience what it would be like? As soon as something good comes into my life, the minute I think I start to feel happiness and joy, it gets ripped away from me and I am left with stab wounds to the heart. When am I going to be cut a break? If this pregnancy needed to end, it couldn't have waited to start happening until after Christmas? It had to happen the day before Christmas Eve?

I have been crying so much and so hard since yesterday afternoon that I started spotting again. I didn't write about this yesterday as I wasn't thinking straight, but Dr. Braverman sent me five emails in a matter of 25 minutes. When I told him what my beta was, I asked him if it was over. He said it wasn't over but he was concerned. After going through five consecutive losses, I know what "concerned" means. My emotions started spilling over into my emails back to him and he sent me a message that said "I will get you there, I promise." As soon as I read that I cried so hard my nose started to bleed. My feeling of hopelessness started to lift as I knew he would help me. He then responded back that I "will be [a mom]", and that he "can't remember not helping someone who is able to make good embryos". He concluded his email by saying that "this one is no where near over yet". I could not be more grateful to him for these emails. Even if this doesn't end well, his words are giving me the strength to even be alive today. I have never had a doctor as caring as him and as concerned as him either. Again, for anyone who has stumbled upon my blog looking for information about Dr. Braverman or Reproductive Immunology, please read through all of my posts on him as words can't describe how wonderful he is.

So now we wait. I need to somehow get through these next 48 hours. My soul right now is split in two; one part is preparing for the worst and is getting ready to lose this baby. The other half of me is clinging to the little bit of hope that Dr. Braverman has given me. Normally I wouldn't do this, but something is telling me to. I feel if my little bean is going to fight, then I need to fight for my little bean. For all of you who read this and have already been blessed with a child, please hold your little ones close tonight and realize what a precious gift you have been given. Please don't EVER take that for granted...life is too short.

Merry Christmas everyone!

Friday, December 23, 2011

Worst Christmas Ever

This post is going to be quite short. I absolutely want to die right now. I just got the phone call that my HCG went from 279 to only 401. That is a very inappropriate rise. My doubling time is 91 hours which means that I only had a 44% increase in two days. I emailed Dr. Braverman and he even said that he is concerned. He did say that it needs to pick up but all we can do is wait until something is seen on ultrasound. He said that there is a small possibility that more than one implanted and we are loosing one or two of them, but if that is the case, my HCG will bounce back, not continue to slow down. I go back on Monday for a repeat beta and an ultrasound. All I know is that the last time my HCG did this we had a heterotopic pregnancy that was treated with three rounds of Methotrexate and a D&C. I can't do this anymore. I don't think that I will ever be a mom!

Wednesday, December 21, 2011

Not A Good Day

This morning I had to go in for my repeat Heparin Anti-XA level. Since I was a bit nervous that I was having some brown spotting since I had that broken capillary episode on Friday, I thought that I would have them repeat my beta for the 3rd time so I new that everything was okay. A little before 2pm my clinic called and told me that my 3rd beta was 279 and that my progesterone was still >40. I immediately started balling my eyes out. I realize that for only being 11dp4dt that 279 is good, however, my last beta on Monday was 165.2 so I only had a 69% increase (63.49 hour doubling time). My first beta was 78.9 so even between the first and second draw I had over a 100% increase. Since an appropriate rise is anything that doubles within 48-72 hours I realize that means I fall within these guidelines, but I have been here before and I don't see this going well. First of all my HCG doubling time slowed from 48 hours to 64 hours and at this point I feel that it should be much quicker. Most women, including myself in the past, double every 28-38 hours. My numbers have always tripled or better within a 48 hour period.

My clinic is insisting that everything is fine, but when I had an initial HCG for 7.8 which increased in 48 hours to 150, they also told me everything was fine but that ended in a chemical. I think between the spotting and the slow increase, I just feel that there is no way that this is going to work out. A part of me feels incredibly guilty for feeling like this as if there is one healthy one in there I don't want to give up on it. The other part of me is scared shitless right now as I don't think that I can handle a 6th loss. I have been searching on various forums and it seems that almost everyone that has a slow rising beta makes it to see the heartbeat but then loses the heartbeat shortly thereafter. To have to go through that for a 3rd time will kill me. Upon my request I am going in for a repeat HCG on Friday. Part of me doesn't want to do this as it could very well ruin Christmas for my husband and I but I don't think that I can go through the weekend pretending like everything is fine if it isn't. It is a lose, lose situation. Please pray for me.

Monday, December 19, 2011

Beta #2

This morning I had to go into my clinic for my second beta, a repeat TSH level, and a repeat immune panel. I am very happy to report that my beta went from 78.9 on Saturday to 165.2 today (9dp4dt)! My progesterone level is now >40 as well. Since my TSH spiked a couple weeks ago, I was a bit concerned that they were going to have to increase my Synthroid dose today. Dr. Braverman said that he wants it under 2.0 but closer to 1.0 is better. My level today was 1.49 so it is absolutely perfect. They will check it again in one month. I go back to my clinic on Wednesday for another Anti-XA level to make sure my Lovenox dose is sufficient. Last time they checked it, it was quite low so they had to up my dose.

My immune panel will take almost two weeks to get back so I will be anxiously waiting to see what they show. If for some reason my Cytokines or NK cells increased, I will need more IvIg transfusions but I guess it could be much worse!! The lab that I use in Chicago knows me quite well (from my many phone calls) and they will actually release the results directly to me once they are up. As soon as I get them I will send them over to Dr. Braverman for his analysis. I am praying that everything will come back perfect so I will have nothing to worry about.

My first ultrasound is scheduled for Tuesday morning (next week) so I am anxious to see what is in there. Everybody seems to think that there is more than one but I am mixed on this. My prayers have been for one healthy baby with a heartbeat that lasts for the next 100 years, that is what is most important to me. I did go on BetaBase to compare my HCG levels and my levels fall right in between twins and triplets but I don't think that things like that are very reliable. Fun, but not reliable. I have known many women who have had very high betas that have been pregnant with only one baby. We shall see though! After my ultrasound I have an appointment with my OB/GYN. She is having me come in to update her with all the changes in my medical history (as there has been so much) so she can send my referral over to our local medical center (45 minutes from my home) for an appointment with a Maternal Fetal Medicine physician. She has been quite vocal that she or any other OB in the area won't touch me due to the complexity of my history. To look at this positively, at least I know that I will be getting the best care possible. My clinic will release me at 9-10 weeks along and even though Dr. Braverman is all the way down in Manhattan (4 hours from me) he will still be collaborating in my care until I hit 12 weeks. Even though he will release me at 12 weeks, I know that he will continue to assist me if need be. He is a great doctor!!

Saturday, December 17, 2011

The Past Few Days

These past couple of days have been pretty busy. On my lunch yesterday I had to go see my Endocrinologist for my monthly appointment. Since my appointment one month ago I have officially lost nine more pounds. He is upping my carbohydrate intake, especially in light of our new development. He also told me that I need to do my best to increase my Glucophage (Metformin) to a minimum of 2000mg, ideally 3000mg. He said even for someone with straightforward insulin resistance a dose no lower than 1500mg should be used. I have been taking 1500mg a day as I was having a hard time taking a large dose in the morning but he told me that I needed to do my best to fight through the GI upset. I am going to try and take 500mg with breakfast and with lunch, 1000mg with dinner and 500mg with an evening snack. With this pregnancy he is going to monitor me every four weeks as I am at much higher risk for gestational diabetes. He gave me his email address and told me to email him right away if my fasting blood sugars go much over 90 or if they are above 140 one hour after I eat.

After my endocrinology appointment, I had an email from Dr. Braverman telling me that he wanted my RE to draw a beta HCG ASAP so we had a baseline even though my original beta wasn't supposed to be until Tuesday. I contacted my clinic and they scheduled me for this morning despite that I am only 7dp4dt (11dpo). A little before noon today I received a phone call from my clinic to let me know that my progesterone level was 33.5 and my HCG was 78.9!! They told me that is a beta that they would expect to see at 14dpo, so my beta is a little on the high side. I hope that indicates that this is a very strong and healthy pregnancy. I go back on Monday for a repeat beta, my immune panel and to have my TSH level checked again. Once I have my second beta HCG level and TSH results, I need to email Dr. Braverman and we will come up with a plan for the rest of this pregnancy. I have a lot of great doctors that are managing me so I feel pretty confident right now that everything is going to be alright. I will take things one day at a time!!

Thursday, December 15, 2011

5dp4dt-What A Day


Since last night I have been feeling a bit "off". My husband has been sick (flu like) so I was all upset that he got me sick. I have been freezing my ass off and I am having a hard time staying awake through anything. Since I am being followed by Dr. Braverman for my immune system, I figured that since we have to repeat my immune panel by next Tuesday, that if I get sick he will be the best person to tell me what to do so it wouldn't effect the outcome of this cycle. The immune panel takes about two weeks to be completed once the bloods are shipped off to Rosalind Franklin Clinical Immunology Laboratory in Chicago, so the sooner we know I am (if I am) pregnant, the sooner I can get the paperwork setup for the labs. Since I wasn't feeling well, I decided that I would start testing today, this way I would get a nice stark white test and any hint of color from here on out would be a definite positive. When I was at Target the other night I picked up a box of Target's equivalent to the old 5 Day FRERs (First Response Early Result). So when I woke up this morning a bit before 7am, I ripped open one of these bad boys, peed on it and counted to five, and set it on the floor so I could "finish up". About 30 seconds to a minute later I looked down and this is what I saw...

It was VERY faint, but both my husband and I saw it. I started researching these Target tests, and review after review said that all they do is give out false positives. There were hundreds of pictures of positive looking tests which turned out to be "false" that looked just like my faint test. After reading those, I said that A.) It was too faint to be a true positive and B.) It is too early for me to even get a positive. At the time I tested I wasn't even truly at 5dp4dt, I still had a few hours to go. I went on with my day and that was that.

Tonight my husband and I had to run some errands so while we were out we stopped at Walmart and I bought three boxes of tests; the dreaded 6 Day FRERs, Clear Blue Digitals, and Equate Early Response (blue dye test). On our way home I started feeling ill again but chalked it up to the fact that I had just taken my Metformin and that is why my tummy was turning. When we came home we watched a few of our DVR'd shows and I curled into a little ball in my favorite chair (large chair) as I was feeling ill again. Since I had to go to the bathroom I figured that I would test again with my last Target test. Sure enough, it showed the same thing but darker. Since I peed in a cup I ripped open the Equate test (+/- kind) and dipped one of those...faint positive. Another blue test, another false positive.

At this point I had no choice but to tear into my FRERs. I have always hated these as they pick up levels as low as 6.8 so if they are still negative 4 days before AF is expected, you aren't pregnant. I watched my pee go across the test line...nothing. The control line is as dark as can be and the test line is stark f-ing white! Desperation has now kicked in so I rip open the digitals. I set it down and walk away. I count to 200 and come back. This is now what the FRER looks like (3-4minutes elapsed)

OMG, faint line. As I am standing there in disbelief, this happens:

PREGNANT!!!!!! I can't believe it. So many emotions are running through me right now. I am excited but scared shitless at the same time. I have been here before and this is very scary territory. Before I passed out, I calmed myself down and told myself that I need to take this one day at a time. With it being so early (I still can't believe I got a positive digital this early!) anything can happen but I am going to enjoy every minute of this while I can. After IVF #3 and #4 were a BFN, I am so thankful to have a positive again!!

Monday, December 12, 2011

Cryo Report

Waking up this morning felt like Christmas morning as a kid. I was just so excited/nervous to get my cryopreservation report from my patient portal. I was fearing the worst as out of my previous four IVF cycles, I have never ended up with anything to freeze. I just kept telling myself that having "snowbabies" is the exception not the rule as only 25% of all IVF cycles yield frozen embryos. I was also fearful that if none made it to freeze that I would spend the next eight days worrying that the embryos we transferred were of poor quality too. Think about, if the 18 we were watching for freeze all arrested, what would be the chances that the ones in me were that much better?!?! My hand was shaking as clicked on my patient summary letter which contained my results. I quickly skimmed through it and I didn't see any zeros. I all of a sudden noticed that it said Embros Cryopreserved: 6!!! What?!?! I have six snowbabies!!! I immediately called my embryologist to get the official news from him. I learned that I had 4 expanded blasts; 4AA, 4AA, 4AB, 4BB; and 2 early blasts; 2AA and 2BB. I am so excited I could scream right now.

As I had mentioned before, Dr. Braverman and I were emailing back and forth quite a bit on Saturday after my transfer (he emailed me just to wish me luck) and I expressed my fear that I would not have anything to freeze. He said to me "I am very optimistic, this is why we wanted a lot of embryos. I rarely get problems with this protocol." Boy was he right!! I also found out the his nurse Sandra call my clinic and gave them instructions for blood work "once" I got my BFP...I love his optimism!!

After receiving this news I now have nothing to worry or obsess about for the rest of the 2WW. Even if these (God forbid) 3 perfect Day 4 morulas don't stick, I have at least 2 more cycles I can do before needing to do another fresh cycle. Wow, life is great right now!!

Saturday, December 10, 2011

Transfer Day

My morning started off with a wonderful 30 minute massage. For those of you who know me I absolutely hate to be touched so this was a big accomplishment for me. It was so relaxing and I would love to go again. After that was over they brought me down to the OR and prepped me for transfer. The embryologist came in and gave me a very brief rundown of things. He said that we had three absolutely perfect Day 4 morulas and one with minor fragmentation that he would recommend transferring today. He said that the remaining 19 were still growing but we do know that some of them (three I think) are of poor quality. He said that we can't take any guesses about having any to freeze at this point as it is just too early to tell. He will check tomorrow morning to see if there are any expanding blasts, and if there are he will freeze those. They will also be checked again on Monday and anything that made it to blast will also be frozen. If we end up with anything to freeze we are freezing only one per straw. I thought that they required you to do two per straw but I was so happy to hear that they don't. Imagine if I had twins (or even triplets) and then wanted more down the road and I ended up with multiples again. Yikes!

So after the embryologist left and the Ativan had time to kick in, my RE came in and we discussed what we should do. He said that he would be willing to transfer all four of the morulas but I only wanted to do three. Dr. Braverman suggested three as a bed embryo can affect a good embryo so by filling the uterus with both good and bad embryos, you can actually significantly reduce your chances of pregnancy. So here are the "babies" we transferred...
I have to say that I was also quite impressed with Dr. Braverman. When I came out of the transfer (I left my phone in the car) I had an email from him wishing me luck today. How nice is that?!?! I mean it's Saturday and this doctor in Manhattan who is in demand from women all over the world takes time out of his day just to wish me luck....impressive!!! Not only did I get this one email from him, I got several more over the course of the day. For anyone who follows my blog or finds this while searching for information on Dr. Braverman or reproductive immunology, I would recommend him to anyone. He is VERY worth the money and I wouldn't have it any other way.

So now we wait. My beta is scheduled for 9:45am on Tuesday the 20th so we have 10 days to go. I have decided that I am going to test prior as I want to know before I go in. I haven't decided exactly when I will test but I will be sure to post frequent updates and results. The trigger will be out of my system (since I only did a half dose of HCG) by Monday the latest so any positive that I get after that will be a true one. Wish me luck!!

Friday, December 9, 2011

Day 3 Report

I didn't get as much info as I normally do on Day 3 but I guess that is partly due to the fact that we have so many embryos this time. Normally I have 10 or less so giving me a detailed rundown takes no time at all. When the embryologist called the first thing he told me today was that 23, not 22, had fertilized. Today, we still had all 23 left. The majority of them are all 8 cells, some are 6 cells, and 3 are 5 cells. Ten of them have little to no fragmentation, 10 have between 11 and 24% fragmentation, and 3 had over 24%. Any embryo with less than 25% fragmentation is considered transferable and can result in a baby. So, in short, we have 20 potential babies in a petri dish...as of right now. Based on statistics, not to mention the knowledge I have gained from doing this so long, it is highly likely that not all 20 will still be there tomorrow. Embryos tend to arrest between Day 3 and Day 4, and even more between Day 4 and Day 5. I don't know what to expect but it sure has to be better than anything we have ever had before.

So the plan is to have my transfer at 9am tomorrow morning (Day 4). We were going to originally transfer 4, but Dr. Braverman said that if we have perfect Morulas tomorrow, which it looks like we will, that we should only transfer 3. If there are some so-so embryos, we can transfer 4. I am hoping that some will make it to freeze as well but we won't know that until Monday. The embryologist explained that if on Day 5 there are any compacting blasts, that they will be frozen. On Day 6 all embryos that are either an early blast, a compacting blast, or a hatching blast, will also be frozen. We have NEVER had anything to freeze so this should be interesting.

I will post an update tomorrow.

Wednesday, December 7, 2011

Fertilization Report

This morning I received a phone call from my favorite nurse and I could tell by her voice that she wasn't calling me with bad news. Out of the 27 eggs retrieved two were immature and one was degenerated. So 24 were injected and out of those, 22 fertilized and are growing!!! I can't believe it. I have 22 babies in a petri dish right now!! The only so-so news that I got was that my Heparin Anti-XA level was low so they are upping my Lovenox dose to 40mg from 30mg. I would rather do that now than have problems when I am pregnant.

So, as of right now we are planning on a Day 4 transfer on Saturday (my clinic is closed on Sunday). We still need to be sure that this OHSS doesn't take off and get bad. I am very bloated today and sore but that is to be expected. I am only up 3 pounds so there is no need to worry yet. I started the Dostinex his morning so I am hoping that it works. I actually feel better than what I expected and I have every intention of doing some Christmas shopping later. I can honestly say that this is the first time I have ever been excited about a cycle. Things are going so well!!!

Tuesday, December 6, 2011

ER Update

I never in a million years thought that I would be able to say that they retrieved 27 eggs!!! No wonder I was so uncomfortable prior to retrieval. I am nervous about how many will be immature/degenerated as we only saw 16 or so on ultrasound, not 27!! Tomorrow morning I will get my fertilization report to let me know how many were good and how many fertilized (with ICSI). The only negative thing about today was my TSH level. Prior to starting meds my level was 1.8 which is well in between the wanted 1-2 range. Last week it had shot up to 2.4, and today it was at 3.65. I emailed Dr.Braverman right away and called me at home within 5 minutes. He said that he wants me to start on Synthroid, 50mcg/day, just so we can get this under control. There is actually a lot of new research that shows that increased TSH levels (hypothyroidism), especially those that are over 3.0, are linked to miscarriage and implantation failure. Despite this news he was quite happy with the outcome of my ER. He said that since my lining is so good that he would hate to have to cancel the transfer but at this point we have to take it one day at a time. I start the Dostinex for the OHSS tomorrow morning so I am hoping that will work. He said for now we need to proceed as if we are doing a fresh transfer so I need to start Estrace and 2cc Progesterone in Oil tomorrow night. I am continuing with the Lovenox, Vitamin E, baby aspirin and he has given the thumbs up to stop the DHEA, Maxi-Greens, and the Melatonin...the less crap the better!

So now I just wait until the morning for my fertilization report. I am in quite a bit of pain right now, mainly my back and pelvic area, but that is to be expected considering my poor ovaries were stabbed 27 times with an 18 inch needle!!

Saturday, December 3, 2011

Decisions, Decisions

This morning I went in for yet another monitoring appointment. I was quite convinced when I went in that I wouldn't be triggering until Monday. My usual nurse wasn't there today (I guess I can't expect her to work everyday) so my anxiety was a bit elevated, however, the only other person I trust to make decisions for me was there in her place so that was a bit reassuring. Again, everything looked great on the ultrasound. We measured 10 follicles in my right ovary and 6 or so in my left. My left is usually the overachiever so I am hoping that there are more come retrieval time. The most exciting news is that my lining is up to 8.34mm! I cannot believe it. I actually said to her "are you sure" and she measured it again and got pretty much the same exact measurement. After we were done with the ultrasound she told me that she would call right away with my labs once they were up so I could email Dr. Braverman so he could decide how to proceed.

About 90 minutes after I left she called me to let me know my results. My P4 went from 0.9 to 1.2, my LH actually went down a tad, and my E2 spiked from 2373 to 4450, and that was only in a 24 hour period. Yikes! I immediately emailed Dr. Braverman who got back to me within the hour. He said that we had no choice but to proceed as my follicles still needed some more growth, so he wants me to "coast" tonight (no more stims, just Lupron) and to trigger with half of my anticipated trigger dose but to also add in 150iu of Follistim at the time. So instead of doing two Ovidrel injections for trigger (15,000 units of HCG) he is having me only do only one. He is hoping this coasting will help my E2 levels plateau a bit as he is quite worried about a more severe form of Ovarian Hyperstimulation Syndrome (OHSS). As it looks right now, my E2 is expected to be around 7000 or more at time of trigger. In preparation for this he is starting me on 0.5mg Dostinex (starting day after ER) to help minimize OHSS. He said that I need to face the possibility that my ET will not occur and that we will need to freeze everything. Since no more E2 levels will be drawn, we are going to have to base all of our decisions on how I feel and how everything looks on ultrasound. He did tell me that he has used Dostinex on many occasions and his patients have done quite well on it will no adverse effects on pregnancy rates. I was happy to hear that. I do have to admit that I am a bit worried about OHSS though.

So here is the final plan:
  • Tonight I stop the Follistim and Menopur and only take the Lupron along with all of my other meds. 
  • Tomorrow I stop the Lupron, baby aspirin, and Lovenox and I take one Ovidrel injection at exactly 8pm along with 150iu of Follistim
  • Tuesday morning I go in for my ER. I start on the Dostinex the day after and restart the Lovenox and baby aspirin the day after that. 
Wish me luck and say a little prayer that we don't need to cancel my ET. It would kill me to have that happen, especially since this cycle has been so perfect up until this point. 

Friday, December 2, 2011

Monitoring Update #3

Yesterday I went in for the last of the Neupogen uterine washes. I cannot even begin to tell you how thankful I am that they are done. This one was actually worse than the first. Unlike the first one, the horrible cramps lasted for about an hour. To help pass the time that I had to lay there to let the Neupogen stay in before I stood up, the medical director/owner of the clinic who is usually in the main clinic 2 1/2 hours away came in and held my hand for about 5 minutes. I was very comforted by his presence. He looked at me and told me that this was going to work. The vibes that he gives off are so positive and it is just what I needed.

This morning I had my third monitoring appointment and things are still looking good. I have a good amount of follicles (we stopped counting at 16) that are measuring 14.5 to 15.5mm and one measuring at 18mm and one at 17.5mm. My E2 is already up to 2373 and my LH is at 3.78. My lining is slowly increasing and is currently at 7.74. They are bringing me in tomorrow to check things as my follicles tend to take off the last couple days of stims. My clinic is thinking that I will trigger on Sunday but Dr. Braverman is thinking Monday. He said that he would rather have a couple that are degenerated than have a bunch that are immature, so we are going with majority, not the lead follicle. Since my E2 is already high and typically doubles every 48 hours or so, my E2 is expected to be around 5000 on Sunday which means if we wait until Monday, it could be 7500+. Dr. Braverman said that if we wait until Monday to trigger he will have me use low dose HCG to trigger instead of my dose of 15,000units (2 Ovidrel) and he will also start me on a medication called Dostinex which is used to prevent OHSS, or at least make the symptoms more tolerable. If I end up developing severe OHSS my ET will be canceled and that is the last thing that I want to happen. The highest my E2 has ever been was 4414, so this cycle is going to blow that out of the water. With that cycle I was on the verge of significant OHSS. My abdomen was painfully swollen, I was nauseous as hell, and I packed on the water weight. My RE had to check me prior to transfer just to make sure that we were not putting me at risk.

As soon as my labs are posted on my patient portal tomorrow I will email them to Dr. Braverman along with my follicle measurements and he will make the determination as to whether I trigger on Sunday or Monday. I completely trust him as everything he has had me do so far has worked, even though a lot of it is not standard practice and something that my clinic wouldn't normally do. He is a wonderful (and highly intelligent) doctor and I would recommend him to anyone!

Wednesday, November 30, 2011

Even More Good News!

Before I get into today's monitoring appointment, I will start with a recap from yesterday. Before going to my clinic for my Neupogen wash, my husband and I met with my oncologist to get the results of my cancer screening (breast and ovarian). As I was sitting in the waiting room I had everything I could do not to get sick. I was pretty confident that everything was okay but at that point I couldn't help but wonder what if it's not. Finally after waiting for what seemed like an eternity, the nurse came and got me and brought me back into a small conference room. Within 5 minutes my doctor appeared in the doorway and said "I got good news." At that point I could feel my eyes welling up as I was just so relieved. I had absolutely no BRAC1 or BRAC2 mutations and my risk for breast and ovarian cancer is the same as anybody else. She started going over my family history of cancer again and said that there was still some concern regarding my mom's diagnosis of endometrial cancer at the age of 31 and the fact that her uncles had colon cancer in their 50's. She would like me screened for something called Lynch Syndrome which is associated with early onset endometrial and colon cancer. She is recommending that, in addition to more testing, that I have regular colonoscopies to keep an eye on things. Since my mom is my only living primary relative with one of these cancers, the testing would not be covered by my insurance so she is recommending that my mom get tested and if she is positive for the gene, my testing will be covered. After the Holidays I plan on talking to mom to see if she would be willing to get tested for me.

After this appointment I went and had my first Neupogen uterine wash. All I can say is that it hurt like a MoFo!! My vaginal wall is so irritated from the Viagra that it is pretty much raw and having the speculum shoved in me so that the catheter could be placed sucked royal ass. The infusion itself wasn't too bad but the cramping was very similar to my HSG. I had to lay there for about 20 minutes so it didn't leak out right away and so that the nurses could watch me to make sure I didn't have any type of reaction. After this experience I am not looking forward to doing this again in the morning!

So now onto my appointment from today... I was a bit nervous about how things were going to look today. I am so used to getting bad news that I pretty much just brace myself for it. As soon as the nurse started the ultrasound I could tell that my lining was different than it has ever been. The smallest reading we got on it was a 7.7 which is up from a 6 on Monday. At time of trigger I have never been over a 7.2 so this is a new record for me. My follicles also look great! I still have "a lot" (we stopped counting at 15) and they are all between 11.5 and 14.5mm. My E2 went from 516 to 1235 and my LH nicely increased from 1.07 to 1.59. My next monitoring appointment is Friday morning so I will know what the plan is by then. Based on my previous cycles, my guess is that I will be triggering Saturday evening with ER on Monday but worst case scenario is that I will trigger Monday with ER on Wednesday. I hope that I keep getting good news like this!!

Monday, November 28, 2011

Finally Some Good News!

This morning I went in for my first monitoring appointment for this cycle. I wasn't all that excited as I historically receive bad news on this day such as "you are still at baseline", "you are not responding", or "your lining doesn't look good." Well today that did not happen. As of right now it looks like I have about 10 follicles in each ovary measuring between 10 and 11mm. We took several measurements of my lining and the thinnest reading was a 6.0 and the thickest was a 9.1 and it is already trilaminar. Even a 6 at this point is a record for me as I am usually that at time of trigger. The only concern at this point is my E2 which is already at 516 after only 4 days of stims. Dr. Braverman said that my clinic needs to monitor me very closely for hyperstimulation. He said that since my lead follicle is only at 11 that I can continue with 300 of Follistim and 300 of Menopur but we will need to reevaluate that after my monitoring on Wednesday. Tomorrow (on my lunch) I am going in for the first of two uterine washes using Neupogen. It is a relatively quick procedure and I should be in and out within 30 minutes. I forgot to mention that I had a bit of excitement earlier as I took a quick trip to the hospital this evening. When I had my appointment at my clinic earlier I had mentioned that the gland on the right side of my neck was quite swollen and painful. My RE came in to look at it and decided that I needed to have an ultrasound done of my carotid artery to rule out a blood clot. Obviously I did not have a blood clot and will be starting on an antibiotic tomorrow. Better safe than sorry I guess.

In addition to my uterine wash tomorrow, I have my follow up appointment with New York Oncology Hematology. The results of my cancer screening are in and they asked to meet with both my husband and I. I am sure that is just standard procedure. I feel pretty confident that everything is going to be fine and that I can just continue on with my routine screenings as I have been. Wish me luck!

Saturday, November 26, 2011

This Sucks!

Warning: This post is full of bitching and moaning. Consider yourself warned. 

I successfully started my injections Thursday night. I am very happy that this cycle is underway but in the eight injectable cycles that I have done, this is by far the worst with the injections. Approximately five weeks ago I was diagnosed with Pityriasis Rosea, and at its peak I was covered with hundreds of scaly lesions. The lesions have not only become more scaly but now they have hardened over. This is making it very hard for the needles to penetrate my skin. The needles for the Lupron and the Follistim are pretty small so they aren't really a problem, but the needles for the Lovenox and Menopur are a bit larger and it takes a while for the needle to go in. I actually get nauseous watching it as it pushes my skin in a good inch or so before the needle finally pops in, and when it does it hurts like a bitch! Also, since I started the Lovenox on CD3 this time as opposed to after ER, I am already covered in bruises. I actually had a little pity part for myself on Thursday night because of all this. Between the fact that I am doing this shit for the 8th time and the pain from the needles going through my hardened lesions, I absolutely lost it. The more I thought about how many times that I have done this, the chance that it will not work again, and the thought about it working and having to continue injections until the 8th month of pregnancy, fed my tearful fit for quite some time. After I finally stopped crying I became quite angry. I just kept thinking how unfair all of this is, not just to me, but to all of the women who have gone through this...and I am not talking about those who gotten pregnant with only the help of progesterone supplementation or by taking a pill or even those who have become pregnant on their first or second IVF. I am talking about those infertility veterans who have endured years of disappointment after injecting themselves cycle after cycle only to face more failure. Those who's entire life have been put on hold as there is no time for life outside of fertility treatments because fertility treatments is our lives. I am not saying that those who were successful with minimal help have it easy or haven't felt pain or sadness (I know that they have), but I think it is completely different, it is almost like an exclusive club that you don't really want a membership to. Without this "membership" you really don't understand all that this club has to offer.

Through my blog I have connected with many women who have VIP memberships to this "veterans" club. Women who have been going through fertility treatments non-stop for four or five years (or more), women who have had five, six, and even seven losses, and women who have done seven or eight IVFs and have never once seen a positive test. Although being a member of this club absolutely stinks, it is through all of the other "members" that I am able to continue on. As hard as this journey is, knowing that there are others out there who completely understand how I feel and are rooting me on does make it a tad easier.

Thursday, November 24, 2011

Happy Thanksgiving!

First of all I just want to wish all of my readers a Happy Thanksgiving. I hope all of you have a wonderful day filled with family, friends, and a ton of good food. Since my Endocrinologist started me on the Glucophage and told me that I needed to overhaul my diet, I haven't had any carbs (with the exception of tonight) so I am looking very forward to a small helping each of mashed potatoes and stuffing. My goal is to stuff myself with vegetables so I am not tempted to have dessert. Normally I would give in but my 5th wedding anniversary is on Friday and I know that I am going to give in a bit on that day too (since we are going out for a very nice dinner) so I really need to be careful and make smart decisions as I don't want to pay for it later on with whacked out blood sugars!

Anyway...on a different note, I got the green light to start stims tonight. Dr. Braverman had me take 20 units of Lupron starting on CD3 for three days because my FSH and LH were so low. I went in this morning to recheck everything and very happily I am still at baseline and my FSH went from 2.2 to 5.3 and my LH went from 0.67 to 4.73 so now my levels are absolutely perfect and I should stim well. Next week is going to be a bit hectic as I have to go to my clinic everyday. Monday, Wednesday, and Friday I have to go in for blood work and ultrasounds and on Tuesday and Thursday I need to have my uterine washes using the Neupogen...that should be a blast! Also, on Tuesday I have an appointment with the oncologist to go over the results of the cancer screening. They called earlier this week to let me know that the results were back and they wanted to setup a time to go over them. Since this was a holiday week their next available appointment wasn't until Tuesday. I am hoping for good news as I don't think I could handle yet another thing going wrong...I have had enough of that over the past 3 weeks, I am done!

Monday, November 21, 2011

UGH!!!

 
I went in for baselines this morning and everything looked good. I have a lot of antral follicles, my lining was nice and thin, and there was no indication of cysts. After my CD3 blood results were posted to my patient portal I emailed them to Dr. Braverman for his review. For the third month in a row my FSH and LH are low, 2.2 and 0.67 respectively. They are not as low as the previous cycle but still quite low. A few minutes after emailing Dr. Braverman I received a response from him telling me that my FSH and LH were too low to start stims tonight. He told me to that I need to take 10 units of Lupron twice a day for the next three days and then on Thursday I can drop the Lupron down to 5 units and start stims. Not what I wanted to hear!!! Even though I am so disappointed by this news, I want to do the right thing and what is best for this cycle. I am a tad nervous though about this Lupron thing as I have never done this before. I am worried about being suppressed too much and I am worried about my body starting without stims. I am still going in on Wednesday and Friday for monitoring so at least if things start on their own we will catch it in time and not waste this cycle...I hope.

Sunday, November 20, 2011

IVF #5...Here We Go!

Unexpectedly, AF arrived two days early. I called my clinic today and they are having me come in for baselines tomorrow morning and I will be starting stims tomorrow night. For this cycle, we are doing a Lupron Flare Protocol. Here is a quick overview of what the next couple of weeks are going to look like:
  • Monday CD3-I go in for monitoring tomorrow morning. I am starting my 30mg of Lovenox (blood thinner) as well tomorrow morning and that injection is to be given in the morning now. Along with that I will take 500mg Metformin, 600iu Vitamin E, 25mg DHEA, 3 Maxi-Greens Capsules, and 50mg Viagra Suppository. At night I will take 5 units of Lupron, 300iu Follisitm, 300iu Menopur, 1000mg Metformin, 50mg Viagra Suppository, 3mg Melatonin, 25mg DHEA, 3 Maxi-Greens Capsules, 0.5mg Dexamethasone and a baby aspirin.
  • Friday CD7-Ultrasound and blood work to check response to stims. 
  • Saturday CD8-Uterine wash using 300mcg Neupogen
  • Monday CD10-Ultrasound and blood work, 2nd uterine wash with 300mcg Neupogen, and Heparin Anti-XA level to be drawn to see if my Lovenox dose is sufficient. 
  • Wednesday CD12-Ultrasound and blood work
  • Friday CD14-Ultrasound and blood work
After looking at the stim length of all of my previous IVFs, I am guessing that I will be triggering on Thursday or Friday (week after Thanksgiving) which would put my ER on Saturday the 3rd or Monday the 5th. Since we are shooting for a 5 day transfer my ET will either be on Thursday the 8th or Saturday 10th. It has already been decided that I will be transferring 4. Given my history, Dr. Braverman said that 4 should be our goal. For IVF #3 we transferred 8 Day 3 embryos (only after previous cycle CGH results indicated 2 normal out of 13) and that ended in a BFN, and so did our last cycle and we transferred 4 then.

In a sick sort of way I am looking forward to getting back into my injection routine. I will be bitching about the bruising and the welts within a few days, but in reality, I am happy to do it. It is the only little bit of control that I have left in this baby-making journey.

Wednesday, November 16, 2011

A Sad Day

With every tear that falls, there is a lost heart that calls.
It calls to say I'm here, don't despair, I will come to you
when the time is right, when you least expect me and through
the quiet night open your heart to me, accept me, I will be there
in the end.
Your wait may be long, you may get frustrated by the whole
ordeal. In the end I will be real. While others around you are
succeeding your heart goes on bleeding.
I would thank you for being patient, I would thank you for
being the kind of person who shows persistence. If it were not
for this, I may never get the chance to have an existence.
In the chaos of your day, the calm of your night, let your heart
soar and take flight.
For so many tears, for so many years. You have been trying,
thinking of giving up but never doing it. In the end you just keep
on going in the hopes that I will come to you, the one who deserves
me, the one who can love me as no other can. You will be that
mother that you always wanted to be. Just keep waiting for me.

Today marks two years since our first loss. Never in a million years would I have expected to be sitting here tonight writing this post, still fighting my way through this nightmare. I have never been the type of person that obsesses over a particular date, especially one that marks a day of loss or even a potential due date from a loss. But for some reason this date hit hard for me. I am, of course, sad over the loss, but my pain is much bigger than that. My pain today comes from everything that has happened between November 16, 2009 and today, present day. I am sad over all the lost time, the wasted physical and emotional pain that I have gone through for nothing, and the fact that my entire life has stopped for well over two years. I have a fear that I will be sitting here, writing a similar post to this, two more years from now, still childless. I am scared to think about the possibility of a 6th, 7th, or even 8th loss. When does this nightmare end? Will it ever end?

I am, however, very thankful for my husband today. He has stood by my side through all of this. He as given me the will to keep on going and the strength to fight even when I wanted to give up. He is my entire world and I love him more than life itself. He is my heart, my soul mate. He is everything to me.

Tuesday, November 15, 2011

Oh Happy Day!

As you know, my follow up with Dr. Braverman was today...and I couldn't be happier. Although my labs look screwy individually, as a whole, they are not bad at all. He confirmed that my husband and I have 3 partial matches; 1 DQ Alpha, 1 HLA-A, and 1 HLA-B. He said anything under 5 matches is no big deal. Also, after looking everything over carefully, he said that my immune system seems to be doing all of the right things. Once I am pregnant again he wants to repeat these tests just to be sure that it stays this way. So here is the plan: I am currently still waiting for the bleeding to stop from my lap. It is still bright red but it seems to have slowed down a teeny-tiny bit. Once the bleeding comes to a stop, I will stop my BCP and wait for AF. I will go in on CD3 for baselines and that is when the games will begin.
  1. We are doing a Flare protocol. I will be using 5 units Lupron, 300iu of Follistim and 300iu of Menopur. Originally he wasn't going to use Menopur but since historically my LH is below 2 (more like 0.38) he said that I need a product with LH in it.
  2. No more Prednisone or IvIg!! I am SO happy about this. If for some reason my levels increase with pregnancy once my immune panel is rechecked, then I may need IvIg but as of right now, I don't.
  3. Lovenox-I am still starting on 30mg but he said that a week after I start it, my clinic needs to do a Heparin Anti-XA level four hours after my dose to see if the dose is sufficient as some people need much high doses. I will also be starting the Lovenox on CD3 instead of after ET as he said my elevated APA's are pretty significant and need treatment early. The Lovenox is stopped 48hrs prior to ER and then restarted two days after ET. I am also to start baby aspirin too but that is nothing new. 
  4. Neupogen-Yup, my insurance covered it!! After going back and forth with this, he has decided to hold off on the Sub Q injections and instead do uterine washes using it. The first uterine wash will be on CD7 or 8 and then the second 48 hours later. He said a 300mcg vial is diluted with 1cc saline and slowly injected like an IUI is done.
  5. Trigger Shot-Instead of Noveral he wants me to use two Ovidrel injections, not one. He just isn't a huge fan of urinary based products. 
  6. Progesterone Supplements-No more Crinone!! Instead he wants me to increase my PIO to 2cc's every night and then have a progesterone level one week after ER. 
  7. Other Supplements-He wants me on Maxi-Greens (which I already ordered), 600iu of Vitamin E, 3mg Melatonin nightly (start both of these now), and Viagra Suppositories 50mg twice a day starting once menses stops. 
  8. Metformin-I am currently on 2000mg a day but I am having a hard time handling such a large dose in the morning so he said that I could drop down to 500mg in the morning and 1000mg at night if need be. 
  9. TSH Levels-Even though I do not have a documented thyroid problem, my thyroid gets a bit overactive after ET and with pregnancy. My TSH needs to be drawn weekly to see where it is at. He said that if it is consistently over 2 or even close to 2.5 that I need to start on 25mcg of Synthroid a day. If it goes up to 3 or so (like it did last time) he said 50mcg should be used.
  10. Transfer-I should aim for a Day 5 transfer if I have enough embryos and not transfer any more than 4. 
  11. Additional Testing-In addition to the progesterone level seven days after ER and the Heparin Anti-XA level, he wants the entire immune panel repeated once I get a positive beta and then again periodically. These tests are covered by my insurance but the bloods cost about $120 to ship but I guess that I can't complain. Also the T-regs (blood test) need to be repeated with a positive test and every few weeks after that. 
So there you have it. That was my appointment in a nut shell. His office is ordering my Viagra and having it shipped to me and the only thing that I need to do is have my clinic send him some images of my uterine lining mid cycle. Thank god my clinic digitally stores everything as I can have them email those images right over. Now all I can do is wait...for this stupid bleeding to stop!

Monday, November 14, 2011

Quick Update

I am still recovering from the lap/hysteroscopy. I have been pretty sore over the past few days and I can't wait until it starts to feel better. Only two out of the three incisions hurt, but only when I bend forward or wear pants...something that I really can't avoid. For some reason the incision in my belly button is really pinchy and itchy which I hope means that it is healing. Having my pants rub on it isn't too comfortable, but everyday it is getting a little bit better. The part that I am most aggravated about is the bleeding. I figured that the bleeding would start slowing down by now but it hasn't. I am going through 6 or so pads a day which is a total pain in the ass. Since the bleeding is still continuing on, I am going to stay on the pill until it stops. I just finished my one pack on Saturday so I am on to another. I have absolutely no intention of staying on it the whole month, and actually, I am hoping that the bleeding will stop by the weekend so I can stop them and get AF by next week.

Tomorrow is my consult with Dr. Braverman. Today I went ahead and had Rosalind Franklin email me the pages of results that they had for both me and my husband. I am happy to report that my husband and I only have 3 partial HLA matches so that is wonderful news. The rest...not so much. My CD3 and CD4 cells are quite high which is commonly seen in immunology patients with recurrent miscarriage (well thank you Captain Obvious!) My NK (natural killer) cells actually increased when IvIg was added to my blood which is a bit odd, but without it, I am pretty much in the normal range. My MCH and MCV are elevated along with my monocytes, eosinophils and basophils. I personally am not too concerned about these. I looked back at my previous labs and all of these have consistently been elevated. I don't know much about MCH and MCV but I do know that they are related to the size of your red blood cells and apparently mine are a bit large. Not sure what it means though. My cytokine ratio is a bit elevated which I don't think is a big deal now, but typically it goes up with pregnancy and that is an issue. The only one that I am REALLY confused about is the Leukocyte Antibody Detection (LAD) test. Some of my numbers are elevated which I think is a good thing, but others are very low. Also, something called the LAD flowcytometry is negative, and from everything that I have read, it should be positive. Again, I do not know much about these tests. I did quickly shoot Dr. Braverman an email tonight (he always gets right back to me) and he said that it is difficult to draw a conclusion based on the test that indicates that my NK cells increase with IvIg when they should actually decrease. He said that the only way to know how accurate this is, is to retest them with IvIg after it is infused. It is scary to think that IvIg could actually have hurt me more than helped me! I do have a feeling though that since Neupogen is most likely in my future, that I will not be needing IvIg transfusions anymore...and that makes me VERY happy.

I will update tomorrow after my appointment.

Saturday, November 12, 2011

Available Fertility Meds

I currently have some fertility meds that I will not be using anymore and I would hate to see them go to waste. I would love to be able to just give them away, however at this time, I just can't do that. I have Ganirelix that expires in 2013 and Menopur that expires 4/12. If anyone is interested please email me privately at bringonthebabies@gmail.com. Thanks.

Friday, November 11, 2011

Surgery Update

Yesterday I had my lap/hysteroscopy. All I can say is that I am glad it is over. I thought it was going to be a fairly quick procedure and that I would be home by early afternoon...not so much. We got to the hospital at 8am and didn't get home until about 5:30. The procedure itself took about 90 minutes but the prep and recovery took forever. I don't remember much except waking up with this awful pain on my left side. The surgeon was planning on making one, maybe two incisions but by the pain I could tell that things didn't go as planned. Once I was awake enough to make sense I asked the nurse how many incisions I had and she told me three. Just by that info I knew that he had found something. About an hour or so later I was moved back into my room where my husband was waiting for me. The surgeon came in a little bit later and told me that he had found quite a few adhesions. There were a bunch in my left tube but he also found one that was attaching my bowel to my uterus or tube (I don't remember which as I was still under the influence) and that was probably the source of the left sided pain that I get after ET and even during early pregnancy. He also said that he could not get any dye to pass through my left tube but he felt that wasn't anything to be concerned about. He said that a HSG (which I had in August) was a better test for that so he wasn't concerned at all. We are doing IVF anyway so if it really was blocked it doesn't matter. If we go back to IUI or timed intercourse I will probably ask to have another HSG just to be sure. I am still a bit sore but not nearly as bad as I had expected. My throat is killing me though. I have had many surgeries that required general anesthesia but my throat never hurt like this. I wonder what the hell the anesthesiologist was aiming for?!?! I am resting for the weekend and then back to work on Monday. I have my follow up with the surgeon on Friday so I will get all of the details then. By that time I will have had my follow up with Dr. Braverman too so I should be able to start stims for IVF #5 the following week.

Ok, time for a Percocet.

Tuesday, November 8, 2011

The Next Few Days

I am anxiously awaiting the answer from my insurance company about the Neupogen. Last week the decision went into what is called a Level 1 Appeal which means that a group of "officials" sit around and discuss my case and decide if I am worthy of this medication...I just hope they are not idiots. I have a gut feeling that it isn't going to get covered which means that I will be paying out of pocket for it. I will need about 30 vials of this medication, and at almost $300 a vial the total cost will be somewhere around $9000. I am slowly preparing for this financial hit. I have started looking into Canadian and Indian pharmacies to see if I can get it cheaper. Apparently there is a generic Neupogen in Canada that is a little cheaper than the brand, but I am not sure if my doc is going to feel safe about ordering meds from Canada. According to my insurance company we will have a decision tomorrow but I am not holding my breath.

Thursday is my lap/hysteroscopy so I will probably be two sheets to the wind until Saturday as I completely plan on indulging on my Percocet. I am hoping that they aren't going to find anything but I feel better knowing that if they do it will be taken care of right then and there and I won't need to schedule another surgery. After I get through Thursday my next big barrier is my follow-up with Dr. Braverman. I am hoping that he will tell me what meds I will need and that he will give me the green light to start. I am a tiny bit worried that he might tell me that I need to give the meds a month or two to work before doing my next IVF. I cannot stress about that right now as I need to take it one day at a time.

Saturday, November 5, 2011

Busy Few Days

Sorry I haven't updated in a while but these past few days have been absolutely crazy. Wednesday I went for my pre-op at the hospital and then I met with the surgeon. The surgeon said that as long as I don't have any signs of endometriosis that I probably will only end up needing two incisions. If they do find endo, it is likely that I will have four. I am not the least bit concerned with the incisions considering I have a 10 inch scar running down my sternum from previous surgery. I am more worried about the pain from the gas that they fill you with. I was told to expect some sharp "heart attack" type pains in my shoulder and neck. It was suggested that I pick up some peppermint tea to help with this. They also said that the best thing that you can do for this is to walk around. The other thing that is freaking me out a bit is the thought of ending up with major pelvic spasms again. After my bladder surgery this happened and it caused my bladder to shut down leading me to be catheterized for almost seven weeks. I also had pretty intense spasms after my uterine septum resection in April and they ended up keeping me for 8 hours to get them under control. I just want this surgery to be simple and without any complications. On Thursday I went for my cancer screening/counseling at New York Oncology Hematology. I met with two oncologists for about an hour. We went over my personal cancer history and also that of my family. They urged me to have the screening done so I did. They said that it will take about two to three weeks for the results to come back at which time they will call me and schedule a follow up appointment. I am not sure what to expect but I am hoping that everything comes back negative.

Friday was my husband's appointment with the cardiac surgeon. As expected he recommended surgery. Originally surgery was only needed on the left atrium but now the doctor feels that it is going to be a bit more extensive given this development of the ventricular tachycardia. The surgeon said that the procedure would take four to five hours and would require him to stay a few days in the hospital. I was a bit surprised to hear this but apparently even someone who has a quadruple bypass now only stays in the hospital for 3-4 days. We decided not to make any snap decisions while at the appointment so we asked that surgeon if we could go home and discuss this over the weekend. He had no problem with this and said that it was not emergent at all and we could take all of the time we need to decide. I personally want him to do it as I don't want to see him end up with a problem down the road that can't be fixed. He is nervous about doing it but is enticed by the thought of coming off all of his cardiac medications. The medications make him very tired and he just doesn't feel great on them especially considering they just doubled his dose. I am hoping that we will come to some sort of decision within the next few days, but we just need to be sure that we are making the right decision.    

Tuesday, November 1, 2011

Getting By

Thank you to everyone that commented or sent me a private email after my last post...it really means a lot. I think that once I get through these next 2 1/2 weeks that things will be better. I am quite anxious about my follow up with Braverman which is in less than two weeks. I am so afraid that he is going to tell me that what is wrong with me can't be fixed. I am part of an online reproductive immunology support group and one of the girls in that group had her follow-up with Braverman today and was told that her and her husband had too many genetic similarities and that is what contributed to her having a handful of losses. The only thing that can be done for this is tons of immune medication and lots of hope. After everything that my husband and I have been through I can't help but to think the worst. What if we find out that having a child is impossible??

Tomorrow I have my pre-op for my lap/hysteroscopy in the afternoon and my surgery is next Thursday. Then on Thursday I have my cancer screening at NYOH and Friday is my husband's surgical consult. I am also waiting to hear back from my Endocrinologist as he wanted to run some tests on my pituitary gland and thyroid but my appointment isn't until the 18th and I will be done with my BCPs 3 days prior...which means that I will be able to start my next IVF cycle. The twist to all of this is that he said that the testing needed to be done when I am not on any injectables or Prednisone. I called his office yesterday to ask if I could either move my appointment up or have them order the tests PRIOR to my appointment but they have yet to call me back...typical. I want to make sure everything is taken care of prior to starting IVF #5 but I don't want to wait another entire month.

**deep breaths, deep breaths**

Sunday, October 30, 2011

Dealing With Emotions

Over the past few weeks I have been busy trying to keep my schedule straight as I have had so much going on. Now that I have had a few moments to just sit back and relax, I am faced with all of my thoughts and fears, something that I haven't had to deal with in a while. Over the past few days I have found myself crying a lot. I am miserable about myself. I absolutely hate the way that I look. Not only do I have this weight gain to psychologically contend with, but I am now dealing with horrific acne (not sure what that is all about) and these disgusting lesions. My dozen or so lesions have turned into about 100. I am completely covered and they itch like hell. I feel like the most unattractive person in the world right now. I am constantly reminding myself how much better my husband could do and it makes me sad to think this way. I worry all the time that he is no longer attracted to me...I can't say that I blame him if he isn't. I am truly gross...

I am also worried about my husband. We have his surgical consult coming up on Friday. I know that the best case scenario is the surgeon telling us that he is a candidate for surgery, but it scares me to see my husband like that. Even though I am the tough one, the matriarch so to speak, I still like to think of my husband as the strong and solid one. It is really hard for me to see him this way. I know that he is going to be okay but when I see him in this condition I become overwhelmed by fear, the fear that I could lose him. I would be nothing without him, he is my entire life. I can honestly say that without my husband, I have nothing. He is all the family I have.

The other thing that has been bothering me a lot lately is my failure to be a mom. In two weeks it will be 2 years since our first loss. Two years and 5 losses later, I am still stuck in this infertility hell. I am not sure why all of a sudden I am having such a hard time with this. Maybe it is all the baby activities (showers and such) coming up that are getting to me. Maybe it is all of the pictures family and friends are posting on Facebook of their new babies, growing bellies, and ultrasound pictures. Maybe it is the nearing Holiday Season that serves as a reminder of all that I have lost and all that I don't have. I am usually a holiday fanatic but this year I have no interest in the Holidays. I am not having my annual Holiday party that I always have as I really don't feel much like celebrating or being around people. I don't even want to decorate and this is something that is a huge deal in my house. I could actually care less about Thanksgiving, Christmas, or even the New Year. I still remember how everyone said to me that "good things were coming my way" in 2011...well, I am still waiting and 2011 is almost over. There is part of me that just needs a sign, a sign that everything is going to be okay. I just need to know that everything is going to be okay...

Saturday, October 29, 2011

What A Nightmare

These past couple of days have sucked to say the least. Let's start with Thursday. That was the day that my husband and I had to get our blood drawn so that it could be sent to three different labs for Dr. Braverman. When we first got to the clinic the dry ice had not yet arrived so we had to wait for FedEx to deliver it. The blood tubes themselves had been delivered the day before so I was armed with those. About an hour and a half later the dry ice arrived so we were able to start the blood draw. My husband went first as he only needed six tubes drawn. I, on the other hand, needed 16. I am a difficult stick when it comes to drawing blood or starting IVs so I was tagged teamed by two nurses at once. Since my veins kept collapsing, they ended up sticking me a total of 5 times. After we got the bloods going to the labs on the west coast all packed up, we put the remaining tubes into a biohazard bag. I was responsible for the shipping them to the lab in Chicago so I had to bring the tubes to FedEx and ship them out myself. Since I was already going, I offered to bring the two boxes for the other labs to FedEx so my clinic didn't have to worry about it. We headed back home as there is a Kinko's near my home so I figured that I could just drop it there. When we got there the girl gladly took the 2 packaged items but told me that I had to drive to another location, about 40 minutes away, to ship out the other tubes as they have special packing material at that location. My husband and I reluctantly got back in the car and drove to this other FedEx location. When I walked up to the counter the guy looked at me and said that those needed to be packaged up. I told him that is why we were there and the other location had sent us to him. He said that they do not have the correct material to package it, in fact, no local FedEx had the proper shipping material and that I needed to go to a lab to get the shipping materials. I was absolutely livid at this point. After I calmed down, my husband came up with a plan. We drove to a Staples and bought packing peanuts, a padded envelope, a box, and shipping tape. We packaged it up and brought it to the main UPS center as I didn't want to deal with FedEx anymore. We were never asked what the package contained so $120 later, the remaining bloods were on their way.

Around 4am Friday morning I woke up as I had quite a bit of pain under my left arm. I figured it was razor burn so I went back to sleep. When I woke up a few hours later I noticed that I had a large lesion on my left side and noticed two other small ones on my stomach. I didn't think much of it so I got dressed and it was business as usual. Later that afternoon I decided to take a peek at the lesions to see if they were gone. Not only were they not gone, there were about a dozen more. On my way home I stopped at a local urgent care and asked them to just take a look at my rash. By this time I had about 2 dozen lesions covering my chest and stomach. After everybody and their brother came into the room to look at my lesions, they diagnosed me with Pityriasis Rosea, which is a weird skin condition associated with a viral infection. By evening time those little suckers were itching so I knocked myself out with Benadryl. When I woke up this morning I decided to count how many I had as they quickly multiplied. I now have almost 60 lesions across my chest and stomach and they are now starting to migrate to my back and pelvic region. The docs at urgent care said they weren't anything to worry about and that it would take 6-12 weeks for the lesions to clear up and that it was going to get worse before it gets better. Gee, I have all the luck!!

Wednesday, October 26, 2011

Breaking the Silence

I have said for a long time that I want to take this nightmare that I have been living for the past 2 1/2 years and turn it into something positive, something that could help others. Throughout my journey I have met many women who have traveled down the road of infertility or who have unfortunately experienced a pregnancy loss. The one thing that I have learned is that we all experience the same feelings (hopelessness, fear, failure) yet there is no where to turn for support and reassurance. Infertility and pregnancy loss is a very taboo topic despite that fact that infertility affects 7.3 million women in the U.S. This figure represents 12% of women of childbearing age, or 1 in 8 women. So if this topic is so prevalent in our society, where is all the support? Why is it that you never hear anyone talk about infertility?

I have learned that awareness must be raised about infertility and pregnancy loss. I remember back when I first started fertility treatments that the topic of infertility was something you were not supposed to talk about. It was almost like it was something to be ashamed of. It was only after going through my second loss that I also realized that miscarriage was even more of a taboo topic than infertility. So here I was, all alone with no where to turn, and no one to talk to. It wasn't until I attended a monthly support group at my clinic that I realized that I wasn't alone, that there were other women out there who were going through similar experiences. Month after month, I would sit in this group and see many new faces struggling to deal with what had been dealt to them. It was this past May, about the time that I restarted this blog, that I decided that I was going to break my silence. Infertility and pregnancy loss is no longer something that I am ashamed of. It is a part of who I am and has made me the person I am today.

Earlier today I received an email from a health editor with one of our local news stations. She asked me if I was interested in being a guest on a live "health" show that runs every Tuesday, to talk about my experience with infertility and pregnancy loss. I am very excited to be doing this and I think that this will be a great opportunity to raise awareness and to help others break their silence.

Tuesday, October 25, 2011

Self-Advocacy

The one thing that this journey has taught me is that you need to educate yourself and you need to be your own advocate. Today I was contacted by Reprosource (the immunology lab that will be processing my bloods that Braverman ordered) and learned that my out of pocket cost would be $1800. I played stupid and asked Reprosource to fax me a copy of the requisition forms for the labs so that I could see exactly what they ordered. Once I got these I called Rosalind Franklin, another immunology lab located in Chicago, and asked them if they could process these labs as they are in network with my insurance so they would be fully covered. All but two panels could be done through them. I then contacted Dr. Braverman and asked him to change all of my requisition forms so that the necessary labs could be done through Reprosource and everything else through Rosalind. Since Rosalind is pretty much doing me a favor as they typically only work through Reprosource, I am responsible for knowing what tubes need to be drawn and I am also responsible for the shipping...not a problem. For the tests Reprosource will be doing, they are going to overnight me the tubes so I will have them tomorrow and they will ship the dry ice directly to my clinic for Thursday when I have my bloods drawn. So at this point everything is all set with Reprosource and I am just waiting on Dr. Braverman as he needs to email me a copy of the requisition forms for Rosalind.

I have received quite a few emails asking me to elaborate on the specific tests I am having done, so here they are:
Immunology Panel
Reproductive Immunophenotype
CD3+ (Pan T cell)
CD4+ (t helper) 
CD8+ (t-cytotoxic/suppr)
CD19+ (B cells)
CD3+/CD56+ (NKT)
CD56+/CD16+
CD56+
CD3+/IL-2Rt
CD19+CD5+

TH1;TH2 Intracellular Cytokine Ratio
TNF-a; IL-10 (CD3+/CD4+)
IFN-g; IL-10 (CD3+/CD4+)

NK Assay
50:1 E:T
25:1 E:T
CD3+ (PonT Cell)
CD19+ (B cells)
CD56+
CD19+/CD5+

CBC w/Differential
T-Cell Subtest
Luekocyte Antibody Detection (LAD) 

HLA Panel-both my husband and I
HLA-DQa; HLA-DQb
HLA-DR; HLA-ABC

I am also having Tregs and IL17-according to Reprosource I am the first patient of Braverman to have this done. From what I understand these both look at inflammatory responses in the body. These are the only ones being done through Reprosource and will cost $300 out of pocket.  

I cannot wait until all of this is done. While all of this is being processed I will have my Lap/Hysteroscopy and will go for my genetic consult at NYOH. I am happy about getting all of this done as I will feel better about going into my next IVF cycle.

Monday, October 24, 2011

Consult with Dr. Braverman and Update on My Husband

First, and most importantly, my husband is doing much better. I actually just brought him home a little while ago. They sent him home with a cardiac loop monitor so that they can continuously monitor him wirelessly while he is home. He has a surgical consult a week from this Friday. I can't even tell you how happy I am that he is home...even though he is sound asleep upstairs. I am just happy that he is okay.

In the midst of all this, I had my consult with Dr. Braverman today. We talked for well over an hour. He went over every detail of my history (which is quite complex.) He even had me go as far back as my early childhood as some of my immune problems started that long ago. A lot of what he talked about was over my head (which is quite surprising for me) but when I asked him to clarify something, he did. This is what I learned today:

  1. Without even drawing any blood, he already knows that Neupogen is going to be the way to go. He said that we have tried everything else and this is pretty much all that is left...although he seems quite confident that I WILL get a baby out of this. He said that the Neupogen will recruit cells for the uterine lining (help with my thin lining) and also help the messenger dendritic cells to tolerate the embryo.
  2. Many things indicate that there is a problem with my messenger cells in informing my lymphatic system about the pregnancy. He said normally these messenger cells prevent the body from attacking the pregnancy but if they don't function correctly, the pregnancy will be seen as an invader of some sort and will be attacked. He also said that the fact that I develop severe pelvic pain with each pregnancy at the same time each pregnancy, is another indication that my body is attacking the pregnancy.
  3. Even though they are not sky-high, my Beta-2 Glycoprotein IgG and IgA are high enough to cause a problem as they are rich in Glycoproteins and actually can attack the cells that make up the placenta. Even though I have taken Lovenox in the past, we need to be sure by continuously drawing labs that me dose is high enough.
  4. My husband and I will be going through DQ Alpha/HLA testing to see how genetically similar we are. 
  5. I have Neutropenia...not happy about this one. 
  6. The Metformin that I started on Saturday can actually help my lining even though my serum Testosterone is normal. 
  7. He does NOT want me to get the flu shot. I am soooo happy about this. The shots this year contain Mercury and Formaldehyde so I against them. Also, the longest observation period they did when they conducted the studies for this vaccine was only 3 days...clearly not long enough to determine what to true effect are, especially on pregnancy. If you are thinking about getting one, I would highly recommend asking for the Patient Insert and reading it prior to getting the vaccine...you will be disgusted by what you read.
  8. Flare protocols produce the highest quality blasts (a few recent studies showed) so that is what we will be doing. He is going to start me high on 750iu of Follisitm for 2 days and then drop it down to 450iu and then down to 325iu. 
This is a lot to take in but I am happy that we are getting to the root of things. The plan now is to get the testing done. The lab will be calling me tomorrow to make arrangements for the blood work. My follow up with Dr. Braverman will be 3 weeks to the day from when the blood work was drawn, although I am sure I will be asking to move it up if the results come back sooner. I will still have my hysteroscopy/lap on the 10th. He said it is good to know that there isn't any Endometriosis and he also wants them to visualize that the uterine septum is gone...not just by HSG. My Endocrinologist needs to scan my pituitary gland and thyroid to rule out any problems so we will be doing that around Thanksgiving as we need to be sure that the Prednisone is completely out of my system. I think that this is a great plan. I had a few afterthoughts after my consultation so I emailed Dr. Braverman. Within minutes he got back to me...twice. It is so nice knowing that I have a great team of doctors all working to get me my dream.

**I would also like to thank everyone for their prayers over these past few days. I know that I haven't responded or left any comments on your blogs but over the next few days I will be catching up. Thanks again!!**

Sunday, October 23, 2011

What A Weekend

Well, I am writing this post tonight from a very unexpected place. Yesterday afternoon my husband and I were sitting, watching TV when the phone rang. It was a cardiologist from a hospital about 40 miles away. Apparently the cardiac loop recorder that my husband has been wearing for the last 3 weeks transmitted an arrhythmia that concerned the doctors. My husband wasn't understanding what the doctor was explaining so I grabbed the phone from him and spoke to the doctor myself. Apparently the monitor had transmitted that he was in ventricular tachycardia. I asked to the doctor to clarify that again as he generally has atrial fibrillation, not v-tach. Sure enough he verified that he had about a 30 beat episode of wide complex v-tach. So off to the hospital we went. When we got there they knew right away who we were and rushed my husband back to the stroke/ heart attack center. At this time his blood pressure was running 220/115 so we were a bit worried. He was a direct admission to the cardiac unit but we ended up waiting for about 4 hours in stroke center part of the ER for the room to "be ready." At this point they are monitoring him and playing around with his medications. His Electrophysiologist came in this morning and explained everything. They want to keep him for another 5 days or so as they want to monitor him while they switch around his medications. I can already tell you that this won't happen as my husband is the most stubborn man on the face of this earth. I talked to the doctor about this and asked about him coming home within the next couple of days with the loop monitor. I will also be staying home with him just to be safe. The doctor is agreeable but wants to wait to see how he does for the next 24 hours. We will know more tomorrow.

In the past 2 days I have slept for about 2 1/2 hours. I ended up leaving the hospital around 4am as I had to go home to let my dogs out. I managed to lay down for about an hour and a half, took a shower, and was back at the hospital by 8am (hospital is about 45 minutes from my house.) I will probably leave around 2am tonight so I can let the dogs out but I feel guilty as hell about leaving. Thank God that I had someone to let them out today...I would have hated to drive all the way home to do this. Also, if you remember, my consult with Dr. Braverman is tomorrow. I now will be doing my consult via Skype that way I can come right back to the hospital once I am done. I am praying to God that everything goes well and that life gets back to normal soon.

Saturday, October 22, 2011

Plan of Action

Today was an eventful day. First thing this morning I got the call that my lap/hysteroscopy is scheduled for Thursday November 10th. I go for my pre-op testing on the 2nd and then I have to meet with the doctor later that afternoon to do my history and physical. The RE doing my procedure is not my usual one. Since they wanted to get me in ASAP for this, they put me with the RE that has the first available OR time. This RE is also very nice (very sweet bedside manner) and he actually did my last in-office hysteroscopy and endometrial biopsy.

Today was also the day that I met with my new Endocrinologist. When he first walked in I was a bit put off by him as it seemed like he already had his agenda set for my appointment. I then started going into my history and his total demeanor changed. He became very engaged and seemed rather interested. By the end of the appointment he was thanking me for making him think out of the box and even gave me his email address so we can stay in touch about things as they develop. We discussed the issues I have been having with my blood sugars, my almost non-existent LH and FSH, and my fluctuating thyroid levels. After putting everything together this is what he came up with:
  1. He is pretty sure that I have insulin resistance. He said that even though I don't have obvious PCOS he said that I have a lot of the traits associated with it. For this he is starting me on Glucophage which I am starting in the morning. 
  2. He isn't sure what to make of my declining FSH and LH levels. He is planning on doing a scan of my pituitary gland but he wants to wait until all of my meds (including the Prednisone) are completely out of my system from the last cycle. 
  3. He is concerned about my thyroid. He doesn't like how much my TSH levels fluctuate. He also said that my thyroid felt quite large. Again, once all of the meds have had time to clear my system, he is going to do further tests and a scan to take a look at everything. 
I go back the week of Thanksgiving to see him again so we can schedule this testing. He said that it was best if I didn't do another IVF until we got through all of this and figured it all out. I am fine with this. I have a feeling anyway with the protocol that Dr. Braverman will most likely start me on, that I will need to wait anyway. At this point, I don't care. I just want to make sure that my body is in the best possible condition to do another IVF. IVF #5... 

Wednesday, October 19, 2011

What A Day

To start things off, my blood sugars have been out of control. I have been doing so good and now all of a sudden no matter what I do, I can't regulate them. I have my first appointment with my endocrinologist on Friday so hopefully he will have something intelligent to add. On top of this, AF arrived...with a vengeance. The cramps this time around are awful and they are making me miserable. Since this was Day 1 I notified my clinic so that I can get started on BCP as we need to regulate my cycle around all of this immune testing. After going back and forth a few times with them it was decided that, since I am waiting this month out because of the immune testing, it was probably in my best interest to have a lap and a repeat hysteroscopy. I should know for sure by Friday, but it looks like it will be done in the next two weeks. It is done under general anesthesia and is performed at one of the local hospitals. I am not thrilled about this but apparently they don't know how many incisions will be made until the procedure is underway. Maybe it is better that I don't know. They are very small incisions but the part that I don't like is that all of my incisions keloid which requires laser treatments 3-6 months after they heal. So the less the better!

Something else interesting happened today. Over the past few months, I have been growing increasingly worried about the potential effects that these fertility drugs are having on me. Being on 600 IUs of stim meds can't be good, and the fact that I just completed my 7th cycle, makes me worry a little bit more. With the extensive history of breast cancer in my family, I decided to inquire about maybe having a mammogram just to get a baseline and make sure nothing is going on. A few years back (prior to all this infertility crap) my doctor had mentioned that I should eventually go and have a genetic consult with an oncologist. The only downside to this was that if I did have the testing done, and it showed that I had a gene for a specific type of cancer, I could forget about ever being able to get a life insurance policy. Earlier this year, I actually went and got a whole life policy so now that I am all set in that department, we have decided to move forward with the genetic testing. Two weeks from tomorrow I have an appointment to see an oncologist at New York Oncology and Hematology (NYOH). They will be screening me for uterine cancer, breast cancer, ovarian cancer, colon cancer, and pancreatic cancer. I am not sure how I feel about having this done...my feelings are a bit mixed. On one hand, it would be good to know if my chances of developing a certain type of cancer is high as we will be able to either monitor things very closely to prevent advanced disease, or it can be treated surgically to prevent disease from ever occurring. On the other hand there is part of me that just doesn't want to face the potential of having to deal with something else...I already have enough shit going on. I obviously don't have any cancer now, but just knowing what my risk factors are (if I have any) kind of freak me out. According to NYOH I am considered "high risk" as I have already had a previous cancer diagnosis, have 10 cases of cancer just on my maternal side (with 4 of those being breast cancer where death occurred prior to age 50) and my moms diagnosis of Stage IV uterine cancer at such a young age (age 32). I have not consented to anything yet but I have agreed to talk to the oncologist in 2 weeks. I want to know more "facts" about this as understanding something half-assed only leads to more anxiety.   

Monday, October 17, 2011

Frustrations

By 10:30 this morning I was ready to go back to bed. The day was not going my way and I had a feeling it wasn't going to get any better. Boy, was I right! In my last post I mentioned that I am seeing Dr. Braverman in Manhattan next Monday and how all of his fees are out of pocket for me. So today I found out that the lab that he uses is not "in-network" with my insurance and I have no out of network benefits. I contacted the lab directly today to explain my situation and they informed me that the have a self-pay fee for those that can't use or don't have insurance. The panel for my husband costs $1492 and the self-pay fee is $287. The panel for me is $4038 and the self pay fee is $1204. Now, the real shit-kicker is that they aren't sure if I am eligible for the self-pay fee because of the type of insurance that I have. They offer it to one type of plan but not the other. I asked how we could find out and they said that once they receive the requisition for blood work that they would call me to setup payment arrangements and at that time they would let me know. So I won't know if I will be paying $6530 or $1491 until I am ready to have the bloods drawn and since they are being drawn with my local clinic and then shipped off, I will have to decide prior. How can I decide prior if I don't know the details?!?! Even paying the self-pay fee is making me sick to my stomach. This isn't even including the medication that I am going to need as that will be out of pocket too. I have a feeling that Neupogen is going to be the way he is going to go with me, and that is one hell of an expensive drug to have to pay out of pocket for. I contacted the company that manufactures that medication today to see if they have any type of rebate or anything on Neupogen, and they offer either copay assistance or self-pay assistance. They told me that since I don't have insurance that will cover it that I would be eligible of their patient assistance program. Well, I am not. You have to be near the threshold for Medicaid and that is not the case. I explained to them that I have insurance, but it won't cover Neupogen and they basically said that I am screwed and that they can't help me in any way. The lady I was talking to even felt bad. I have no idea how we are going to pull this off. I have a large balance with my local clinic for this last IVF and now we are adding in even more debt!

I emailed Dr. Braverman today (he is on vacation though) asking him if there was another lab that we could work with. The only other immunology lab that I am aware of besides Reprosource is Rosalind Franklin in Chicago and they are in-network but I am not sure if they offer the panels that he needs as the panels are so specialized. I feel so as I know our only chances at this point of ever having a child is going this route. I wish someone could drop a winning lottery ticket in my mailbox or something. I don't want a million dollars or anything, just enough to pay for this treatment so I can become a mom.