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.

Saturday, October 15, 2011

Taking It To Manhattan

After my negative result on Thursday (and like 12 hours of crying) I sat down and reviewed all of my notes from the previous cycles. Back on IVF #2 the director of my clinic had mentioned to me about seeing a doctor in Manhattan that specializes in Reproductive Immunology, Dr. Jeffrey Braverman. At the time I apparently didn't think that this was a road that we would need to go down as eventually IVF would work, that and the fact that his fees are around $3000 and insurance covers no part of it. Since my clinic was heading in this direction with me (knowing that I couldn't afford to see Dr. Braverman) I started looking at the paperwork for him that I had from a previous inquiry. An hour and a half later it was filled out and off it went to Dr. Braverman. That was at 5:50 and at 8:36 I had an email from him. The one thing that struck me in his email were his words "clearly you need my help." I felt as if someone had thrown me a life preserver and now everything was going to be okay. I responded back to him with much enthusiasm and asked him a few questions. Again, he responded within the hour and said that it was important that I gather all of my records from everything that has happened and have them sent to him prior to my consultation so that he had a chance to review everything. I needed all of the records from my Urologist when my bladder shut down last year requiring catheterization for 6 weeks, the lab results from my Immunologist that I saw briefly who said I have infancy CVID (why I require IvIg), and the records from the hospital that shows all of the tests ran when I was hospitalized (twice) for fevers over 105...and obviously my clinic will send over everything they have as well.

Since starting this process with Dr. Braverman I have already learned from him a number of things:
  1. Clearly there is something immunologically wrong with me that is causing all of these losses/negative results. 
  2. My AMH of 0.67 should not be this low as I am only 31. Someone with an AMH that low that retrieves 17 eggs like I did in an IVF cycle has something wrong with egg quality. He believes that this is due to a condition where my body is attacking the follicles in my ovaries which is why we had such poor CGH results. Basically my eggs never even have a chance as my body is attacking them while they are growing. This could also explain my poor response to meds and why I require such high doses. 
  3. Sometimes taking medications "just in case" without knowing the actual cause of something can have the opposite effect which can prevent success (Prednisone, IvIg, etc.)
  4. With true immunological issues, treatments such as IvIg, Prednisone must be continued throughout pregnancy as stopping them can cause stillbirth, IUGR, and even placental abruption. Most clinic that use these treatments stop them prior to 12 weeks as they are only used as a preventative measure. 
My head is absolutely spinning. There are also all these other things (cytokines, TH1 cells, INF, ROS, interluken 10) that I don't understand much about but apparently they are important. Not only does he use medications such as Nuepogen and Humira, he also utilizes natural supplements. For mild endometriosis he uses high levels of antioxidants...who would have thought?

After much contemplation, my husband and I have decided that this is something that we need to do...even though we really can't afford it (Christmas is going to suck for our families this year!) Dr. Braverman is out of the office next week but wants to get things moving right away with this. My appointment with him is on the 24th and I am very excited. After the initial consultation he will overnight blood tubes and dry ice to my clinic so that they can draw all of these labs and ship them off to be processed. My husband will also have some blood drawn and will probably need to give another "sample." It will take about 2 weeks for all for all of the results to come back and at that time I will meet with him again. We will decide what the plan of attack will be and he will coordinate treatment with my clinic. As a matter of fact I received a call on my cell phone yesterday from the director of my clinic. He was calling to tell me how sorry he was that my result is negative and that we really need to start considering treatments such as Neupogen. I told him that I already had my appointment with Braverman. The director gave me his cell phone number and told me to call him anytime and he wants me to touch base with him right after my appointment on the 24th. God I love my clinic!!

The thing that I need to realize though is that some of these treatments may take a few months to become effective so we might not be doing another cycle until next year...but I will take this one day at a time. At this point I need to do the right thing because my husband and I can't keep going around in circles like this. I am comforted knowing that we have a plan and I now have a "team" of doctors that are all working towards getting me my dream!

Thursday, October 13, 2011

The Conclusion

Unfortunately, I didn't receive the news I was hoping for...injectable cycle #7, IVF #4 has failed. After 6 weeks of hell, we are back at the beginning again. I am really starting to wonder if this is ever going to work. I can honestly say that I wasn't expecting this outcome, I mean, after being able to get pregnant pretty much every other cycle, I can't believe we would have two failed cycles in a row. Right now I am feeling quite down and hopeless. There is a reason for 2 failed IVF cycles, having a total of 12 embryos transferred. There is a reason my first two IVF cycles ended in loss and there is a reason I have had 3 losses before starting IVF. I am waiting to hear from the director of my clinic as the nurse manager is having him call me directly. He has a conference on Saturday but I should hear from him by Monday the latest. We are going to talk about doing the immune panel. I was going to go see Dr. Braverman in NYC, however, I can't afford the consultation fees after wasting (yes, wasting) all of this money on IUIs and IVFs. The nurse manager said that they will do what they can to get this testing done for me as I cannot justify moving forward without doing it. We are reopening the discussion on using Neupogen as well. I really don't give a shit at this point how sick I get physically, as it cannot be any worse than how I am mentally. We are also rediscussing CGH testing. If we do another round of CGH and find that my eggs suck again, we will know that my eggs are just no good. There are so many thoughts going through my head that I am very overwhelmed (and extremely sad) at the moment.

To top everything off I received a lovely email from the adoption agency that we are working with. We had a meeting with them on the 30th and filled out the preliminary paperwork. We were told that the waiting list would open by November so we should be getting a call to start the process shortly. Last Friday I had a missed call from the agency so I was thinking that they were calling us to get the ball rolling. Since I missed the call I emailed them so I could find out what was going on. On Monday I recevied an email back telling me that there were "some concern from [the] directors about [my] husband's age" and that they "feel it will be a challenge to have a young birthmother in her teen's or twenty's select [our] profile." The email continues on saying that the wait for a Caucasian baby could be very long as they have so many couples waiting for a Caucasian baby and that at this time only families willing to accept full African American babies would be considered. Ok, so wait, my husband is too old for a Caucasian baby but not an African American? So if they feel that a father needs to be of a certain age to be a good father, shouldn't that apply to a Caucasian AND African American babies? Does that sound a little racist or is that me? At our last meeting we said that we were interested in Caucasian, Hispanic, Asian, and mixed race but had a little hesitation about full African American as some of his family (the older ones) are old school and we really want to avoid unnecessary drama as we have been through enough.

I thought that we were put on a waiting list for a reason! After I stopped crying I actually called this women and politely confronted her. I asked her what the difference was as I realize that my husband is a bit on the older side (its not like we are planning his funeral or making nursing home preparations) but I am 31. She said that it wouldn't be fair to the child and that the directors had concerns regarding my husband being too old to father an infant. She actually suggested that we consider adopting an older child, like a 10 year old. Umm, again, I am only 31. She said that a birthmother will not select us because of his age...despite the fact that our profile doesn't even reveal our ages. My husband is in great shape and has a full head of jet black hair so it isn't like he looks old. She did say that if the birthmother asks that they have to tell her, but I wouldn't expect them not to. I feel as if THEY are the ones discriminating, not the birthmothers. She then went on to say that there were too many couples in their 20's and 30's who are waiting that would be chosen before us and that they are reluctant to take someone that is in their mid 40's or older as they tend not to get picked. And back to the whole African American situation....again, a Caucasian baby is worthy of a father they feel to be fit based on age, but that doesn't apply to an African American baby?! The next question I asked was about problems with health. I asked if it makes a difference that we are willing to accept medical cases. She asked me "like what?" I told her that we would consider a baby exposed to drugs as I have experience around this and understand it quite well. I said that a baby exposed to Methadone or Suboxone is something I would even consider. Her immediate response was "well, what about a baby born addicted to heroin?" It was at this point that I realized that every option that she was giving us, to her, was a "misfit" situation and that is all that my husband and I are worthy of even though I don't view African American babies or heroin addicted babies as misfits, they are a gift from God no matter what. And anyway, how can you compare an African American baby to a heroin addicted baby. One is a complex medical case, and the other is regular baby, just one that has darker skin....what is the big deal with that! I can't even tell you how outraged and disgusted I am by this.

They are supposed to be a "Christian" agency but I don't believe their values are very Christian. Until she knew our ages she was very excited about working with us. She even gave me a book to start reading to prepare me for things. I think over these past 2 1/2 years my husband and I have proved how much we want a child. We would not have gone through all that we have if we weren't serious about it or determined. It is so unfortunate that a child who needs a home will never have the chance with us as I know that we would be great parents and we have so much to offer. I think that it may be time to contact the media...or even a lawyer! 

Tuesday, October 11, 2011

35 1/2 Hours and Counting

My nerves are starting to set in a bit. I am not freaking out or anything, I just wish Thursday would hurry up and get here so we can either continue on or move on to what is next. I seriously don't know what to think at all, I have no guesses at this point. I have learned the hard way that both the PIO and Crinone will make you think that you are pregnant so I have absolutely no way of knowing. The one thing I am a bit worried about is that I think I am getting sick, a stomach bug to be exact. I have had the dry heaves today (can't ever throw up again due to previous surgery) and I have been having issues with the other end...if you know what I mean. I am hoping it is nothing as I don't want a bug to interfere with things...that is all I need!

Sorry for such a short post tonight but I just need to go to bed.

Sunday, October 9, 2011

The Week Ahead

Well this stupid waiting game is getting down to the wire. Today I am 8dp2dt or 10dpo. I'm still having some pretty significant cramping and I have ruled out constipation and gas. The cramps are somewhat similar to AF cramps so I am not sure what to think. AF usually doesn't come for a week after I stop the PIO injections so I am not sure what is going on. My Beta is scheduled for Thursday, however, I am thinking about changing it to Friday because of my schedule. Things have been a bit crazy with work so I am trying to hold it all together. It is tough trying to juggle a demanding job with fertility treatments but I am quite proud of myself and how well I have been doing. My job performance has not suffered at all and my boss seems pleased with how I am doing. As long as he is happy with my work and I feel as if I am doing a good job, what else could I ask for?

There is something I have been holding onto and haven't really mentioned. I guess I have been somewhat in denial and trying to keep my stress levels as low as possible during this 2WW. Last week my husband had to go see his Cardiac Electrophysiologist for his annual appointment. Over the past year he has had some problems that have landed him in the ER a couple of times. Since he is still having breakthrough episodes, the doctor feels as if the medications he is on aren't working all that well anymore. He talked about switching him to a different medication, but he doesn't think that will make much of a difference. After going back and forth about this, he has decided that the best thing for my husband is surgery. They want to go into his left atrium and ablate the heart tissue around each pulmonary vein. The doctor said that this surgery has about a 70% success rate but generally needs to be repeated one time in about three years. Right now he has a loop monitor that he is wearing for 30 days and he has to go for a electrocardiogram to make sure that his heart is in good condition otherwise for the surgery. We go back in a month to schedule the surgery. My husband is very scared about doing this but the doctor said that now is the time. I think that the more we talk about it, the more he is becoming agreeable about going through this. The doctor would like to do it before the holidays so it is going to happen rather quickly once we schedule it. As much as I don't want to see him go through this, I want him to be okay, now and in the future. I just wish things weren't so damn complicated.   

Saturday, October 8, 2011

Progesterone Sucks!


Yup, this crap sucks! Being on the injectable form sucks, but add in the vaginal suppository, and it is a whole other ball game! Today I am 7dp2dt or 9dpo and boy is the progesterone kicking in. Last night after I got home from a wedding I thought that I was going to need to go to the ER. The pain that I had was unbelievable. It was concentrated in my lower back but shot up the sides of my back into my shoulder blades. The cramping started last night too (not too bad) but became pretty uncomfortable this evening. They are the kind of cramps where you think you are going to need to run to the bathroom, however, that sensation is in your uterus, not your stomach. I have also been crying for no reason, followed by periods of hysterical laughing...so pretty similar to a psychotic episode! The best side effect though is what I refer to as "dog in heat" syndrome. I think this one is pretty self-explanatory. This side effect would be great, however, my clinic recommends abstaining from sex and orgasm until Beta...a whole freaking 2 weeks! Some clinics recommend waiting until a heartbeat is seen on ultrasound but I think that is a bit excessive.

Due to the Lovenox (injectable heparin) and PIO injection, my ass and stomach are a train wreck. It doesn't help the fact that I have a 22 gauge 1 1/2 inch needle rammed into my ass every night along with the Lovenox injection in my stomach. I am seriously running out of room to do these injections. My stomach is nothing but one big black bruise and where my husband does my PIO shots I have formed large nodules as apparently my body doesn't appreciate a milliliter of oil being forced into it through a large needle. I know, I have a really big ass so I shouldn't be running out of room. However, the injection areas are limited.
This is basically what I have to work with (X marks the spot.) We change sides every night but considering these injections cause nodules that are about 1/2 inch in diameter, space is really limited. The best part is when we hit one of those nodules with the needle. When this happens the injection site sprays blood as though we hit an artery. I cannot even tell you how many times this week I have had to wipe down my cabinets and wash the throw carpet!

Even though I hate the injectable progesterone, I hate the vaginal one (Crinone) even more. I use this one every morning (where the injection is done at night) and just let me saw EWW!! It is this white cream that comes in a pre-filled applicator. Your body absorbs the actual medication rather quickly but the cream does not fully dissolve. It turns into this lumpy white mess that comes out one of two ways: 1.) Every time you take a shower (ready for the TMI?) you must dig the left over gunk out. Yup, using your finger. 2.) As you walk around throughout the day, it just leaks out. Not slowly, but to the point were you think you unknowingly peed yourself. Everyday you must carry at least a 1/2 dozen pantyliners with you or you will be sorry. When desperate times call for desperate measures, taking a paper towel and folding it also works. For those of us using this after IVF, we are also lucky enough to need Estrace. Estrace is this small, blue oval pill that prevents your estrogen from tanking after they suck all of the eggs out of you at ER. The Estrace is used vaginally at the same time as the Crinone so this white cream, now turns blue. So needless to say, if you are wearing white pants and forget a pantyliner, you are screwed! The one thing about progesterone that tops all of this is that it is a complete mind f**k. I, like so many other women, have learned that being on progesterone and being pregnant, feels just like being on progesterone and not being pregnant. The progesterone mimics every known symptom of early pregnancy, so if you are on a supplement there is absolutely no way to know if you are pregnant. Yup, IVF is fun!!

Thursday, October 6, 2011

Pain In The...

I have been so uncomfortable the last couple of days. The swelling and pain from my ER finally got better on Monday as I felt human again. However, Tuesday night I had a sudden onset of pain in my lower left pelvic area. I just figured that it was more "IVF" related stuff, but I noticed that if I touched the area I hit the ceiling. I also had quite a lump. I figured that it was a swollen lymph node so I went and saw my GYN on Wednesday as I didn't want to risk infection so close to possible implantation. From this appointment I learned that I have a hernia. Lucky me! She said that it was small but there wasn't much we could do even if we wanted to because of the IVF. She also ran a urinalysis and that showed that I had blood in my urine. She sent it out for culture to rule out UTI so I should know about that next week, although I doubt I have a UTI. I also think that the pain and that lump is still nothing but a swollen lymph node, but who am I...

The TWW is going quite well as I have not been thinking of it much. If you notice, the last time I posted an update was on Sunday, and that is not like me. I am focusing on other things and actually staying quite busy. I have a full weekend planned too. I am staying committed to not POAS before my Beta. The one thing that I have learned is that my result means nothing. If I POAS and get a BFP it doesn't mean that it isn't going to turn out to be another chemical pregnancy or result in another miscarriage. If it is a BFN, I will go crazy as I will want to stop my meds so I can get AF and just move on, however, my clinic requires you to wait the full 14 days from ER. So even if I no it's negative, I will still have to live in hell for how ever many days until I get the okay to stop my meds. My husband and I have both taken Thursday off so we can be together when we get the call. Right now I have no plan if it is a BFN as that isn't really important right now. Normally at this point I would already have my next protocol planned out but for some reason I really have no interest in doing so, it just isn't a priority right now. I know, so unlike me. This new found peace I have is the best thing in the world!

Sunday, October 2, 2011

10 Signs You Have Been Doing Fertility Treatments For Too Long

1. You are able to estimate your E2 level within 10 points on any given cycle day.

2. Your RE asks you to assist with a consult for another patient.

3. You've had more miscarriages than periods in the past year.

4. If you go a day without progesterone supplementation, you get the shakes.

5. You have become somewhat of a injection exhibitionist, having shot up from your plane seat, in the movie theater, and even in the middle of a company meeting.

6. Your vaginal wall has more needle holes than a heroin junky's right arm.

7. You order HPTs in increments of 10.

8. When calling Freedom Fertility to reorder your meds, you don't even need to give them your name as they recognize you by voice. 

9. The veins in your arms and hands are so blown out that they draw your blood from your neck, vampire style.

10. At ultrasound exams, you no longer hide your panties anymore. In fact, you don't use a lap drape anymore either.

Saturday, October 1, 2011

Two Week Notice

Yup, that's right, I am officially in the dreaded 2WW...actually it is more like 12 days since I did a Day 2 transfer. Prior to my transfer I had a wonderful massage which I was pleasantly surprised by. I am not one for being touched, and given that my massage therapist was a man, I have to say that it was heavenly. I freaked out a bit prior as I was expecting a women but instead I was greeted by a very tall man who just happened to be a local city cop that took up massage therapy 8 years ago as something different to do. I was a bit intimidated at first but he was so nice and comforting. He knew that I was nervous so he talked to me for a bit and shared the struggles that he and his wife went through with their first daughter. He also told me about the little girl they adopted from China as they couldn't have any more children due to the circumstances around their struggles. After the massage, we proceeded downstairs to the OR. My favorite RE was working (thank God!) and he told me that everything looked great. We transferred 4 beautiful embryos, all of them of the highest quality. I stayed on my back in the OR for about 25 minutes (trying not to pee myself) and then I was brought back upstairs where I had a hour long acupuncture session where I ended up falling asleep. 

Overall it was a good day. Now I am just taking it easy for the rest of the weekend. The only complaint I have (yes, only one) is that I am having quite a bit of pain. My RE said that I could take Vicodin but I am afraid that it will "back things up" and I am thinking that is already part of the problem. So for dessert tonight I will be having grape Gatorade with a shot of Miralax. Hopefully that will help!