Sunday, December 28, 2008

Back home...

DH and I made it back home safe and sound, after the long 10 hour ride. FIL is doing a lot better and was going to get released today but his blood pressure was up, so maybe tomorrow.

Friday, December 26, 2008


Well DH's father was discharged from the ICU yesterday around 4pm. We went to his grandmothers to have Christmas dinner. His father was napping and it looked like he was still have a few issues breathing while he was sleeping. We finished eating and they (mom & dad) went home and we made another stop. DH and his brother decided to go to their cousin's bar for a few drinks. DH was adamant that I go, I was adamant that I didn't want to go. For some reason I just wasn't feeling going out last night. Low and Behold around 1:30 his mom comes and knocks on my door and said I gotta take Dad back to the ER. I get up and call Adr!@n and they rushed back. It was very very icy out and Dad didn't want to call an Ambulance so we drove him to the hospital. I probably held my breath the whole time by the way DH was driving. We took two cars and we made it there before they did to try to get someone ready for when they drove up. Nothing happened. By the time they drove up, DH was cursing at anything breathing because no one was moving. I ended up grabbing a wheelchair and pushed it outside myself to get Dad inside. He was gasping for air and crying and this put Adr!@n and his brother and sister over the edge. It was tough to watch and DH was so upset and angry, one of those you have to stay out the way and just let him work through it type deals.

His Dad was made stable and finally checked back in into ICU around 6:15 into the same room he was in earlier....3138. We finally leave the hospital around 6:30 but his mom stayed here with his dad. We were back up here at 11. So needless to say we are all working off fumes right now. The docs think his dad may have had a minor heart attack last night, and they are now discussing what treatments will be happening now.

We were planning on going back home on Sunday, but I'm not sure what DH's plans are now. We originally drove up here, but I may just fly back on Sunday so I can get back to work, or maybe DH will drive us back on Sunday and fly back out if he is needed. Right now its all up in the air.

So keep the prayers coming....we still need them.

Wednesday, December 24, 2008

FIL Update....

Thanks again for the prayers.

Update on FIL:

They ended up going in with a catheter first and they found that his valve on his heart wasn’t as closed as they originally thought and he may not need open heart surgery after all.

He is still at the hospital recovering from that procedure and hopefully will be able to go home tomorrow.

About the BFF issue, I really just need a break from all that drama. I can’t help but to think about her, but I refuse to go there with her. Maybe sometime in the new year or after my cycle in March, but definitely no time soon!

Tuesday, December 23, 2008

Get out of my head

So as I sit here in the waiting room at the hospital with nothing but time on my hands, I can’t help but to think about my day yesterday.

Firstly, thanks for the prayers for my FIL. They are planning to do open heart surgery tomorrow, but they think the kidneys may fail when they start the surgery so the plan is to hook him up to a dialysis machine and keep performing the heart surgery if this happens. So again, please keep my husband and his family in your prayers.

Now my mind has been elsewhere the rest of the time being here because I can’t help but to think about how I feel about how I’m always skipped over and those who don’t deserve always get. Why must I continue to have to go through all that I go through to try to get one child when others can just pop them out like its nothing? I’ve always told my BFF that our relationship is demanding and very one way, she requires a lot from me and expects a lot and often it isn’t returned. I’ve had to put her in her place on things to say and things not to say about me being infertile and the battles we have fought and continue to fight. We didn’t speak for over a year after she had her first abortion back in 2002, but yet we still always seem to come back. I just don’t get it. Don’t get the timing, don’t get the reasons, just don’t get it!

I’m sitting here and should have my full attention on my DH and his needs and I can’t seem to shake myself out of this pity party slump I’ve been in since her text. Not that it wasn’t enough that that’s all I thought about the ten hour ride up here, but now its haunting my every thought still today. I don’t want to bitter and I don’t want to be angry and I don’t want her to think that I’m reacting the way I am because I’m a bitter infertile, but it’s so much deeper and feelings so much deeper that I can’t even begin to explain. I’ve tried to figure out the feelings and why I’m so angry and I just keep coming back to the same thing about her being careless and selfish.

I want so much to let this go and not think about it anymore, but how can I do that when I close my eyes, I’m haunted by a picture of her growing belly in my head, haunted by the thoughts that her 12 year old will now have even more responsibility on her than what she already had with the youngest girl, haunted by the thoughts of everything! What was done so horrible in my life that I must endure this endless battle of infertility while others just take for granted what they have and can’t be responsible and protect themselves if they “can’t help that God made them fertile!”

I need to let go, and I need to move on. Why? Why did she pick this time to tell me? She knew we were on the road going up to Ohio because DH’s dad was sick. She knew this because we exchanged text messages before she sent the ‘bomb’. And the way she started her text message was this (this is word for word as I still have the messages in my phone):
Her: Can I ask you a question
Me: Sure
Her: Are your feelings still the same as they have been lately as far as having kids are concerned?
Me: Oh my bad girl. How did I forget to update you. DH jobs offers 4 ivfs so we switched to his insurance which starts Jan 1. I switched docs and will do another cycle in March. Right now on lupron which should help with the endo.
Her: So the title of this book is “I DIDN’T KNOW HOW”
Her: Yeah that update was slightly missed an I need 2 tell you that I’m pregnant but really don’t know how 2 tell u….told myself that I would tell u by the end of the year but I just really didn’t want to hurt you with my words like before so I’ve been trying to figure out what was the best way to come to u an say I’m 6 months pregnant due in April an that is another reason why me being unemployed right now really shook me and compounded the whole issue. Did and still really don’t know how to say any of this…cried last night on Ant chest because I told him that I wanted/needed to tell you but I didn’t know the repercussions there might be for not telling you long ago. There could be feeling of you ain’t been told me an my answer is because of what you were going through I thought this was not the thing to be discussing an I’ve been monitoring you on how you’ve been handling DH’s cousin pregnancy and birth just to get an idea of what your reaction might be. Then you may feel I’m her BFF so why could she tell me if any body know it should be me right, I’ve wanted to tell you for so long an concerning anybody knowing just know that only the good Lord, Anthony and my mom knows, no one else and no one in SC knows and I will be going there Friday (talk about a shock) but for any feelings that I may have caused u that are negative I apologize first and foremost. U my girl and u always tell me that I can come to you about anything but your BFF tries to guard or consider your feeling because of her actions I ask that you please forgive me please don’t take me not saying nothing as withholding anything from you because I only did it because I didn’t know how to tell you. And if your mind take a back a bit and you begin to wonder was I pregnant when I came to visit you the answer is yes, but I didn’t know. I found out August 30 after I was home for my grandfather death and had been drinking like a fish. And when you came here to visit me yes was pregnant then also with a little pudge but you didn’t notice. You may say to yourself why tell me now and the answer is because one you mentioned you would try again which signifies your hope for you which means a lot to me after at 2 points you had given up on it. Two I was gonna tell you before the end of the year but with you traveling due to circumstances there may not be time to discuss such with the outcome with Adr!@n’s dad being unknown and three because I can’t wait anymore. You should hear the ideas I had of how to come an tell you and to be honest texting you wasn’t even a thought. Even now I await a response like a kid sitting outside the principal office….so…..
Me: Don’t call me your BFF because if I was your azz wouldn’t be sitting over there 6 months pregnant and your so called BFF just finding out. You so full of it and don’t try to act like you waited to tell me jack because of my feelings because you could have been woman enough to tell me when I was there with you. I should have let this mess go when you went in detail with me how you felt about me and my sh!t stinking. You don’t think and I don’t know how many d@mn oops pregnancies you gotta have before you get smart enough to use protection. Whatever! Do you! Thanks for your wonderful news 3 days before Christmas….and what this is your fourth pregnancy to my none like Christmas ain’t already hard enough. Man WTF ever! Your BFF….yeah WTF ever on that note too!
Her: So you see no time was the right time it just had to be a time chosen. I was thinking it would be hard then and look its hard now so when was the right time, there wasn’t any. And don’t try to back track to our falling out over the summer because this has nothing to do with that. Stop being a runner and expecting even our relationship to be perfect because that’s what make us us. We get through stuff. I’m not asking you to carry me or anything of that sort, gosh with everything you don’t even have to be there for me on this matter. I said nothing because I didn’t want this outcome with you and look who’s to say speaking up then would have made any difference. I’m fertile an that’s how God created me and if I could give you my insides, then I would hands down. So you tell me what am I to do? I pray I have faith an I believe you two will give birth. You didn’t react like this with Adr!@n cousin so why with me????
Her: I’m not going to entertain the past with you about our falling out because that has nothing to do with this. Yes me getting pregnant was not planned but had I aborted it and asked you to be there for me on that you would have been bothered about that too. If I had aborted it and said nothing till years later after you had given birth to twins, me aborting a child would have still bothered you. I tell you I found someone I wanted to marry an I’m pregnant by them and because I waited because I didn’t know your response I bothered you (side note: this will be her 4th engagement and 3rd marriage! Reminder...we both are 26)….HOW WAS I TO TELL YOU AND NOT BOTHER YOU. THAT IS WHAT I WAS TRYING TO DO? With you I try Tash!d@, I try to the best of my ability to handle things right with our differences and dunn its like again I fail. Why because I did consider your feelings toward this or because I just didn’t get it right on how to deal with this once again????
Me: Stop texting me and don’t call me either. Best of luck to you and yours.
(after this she called my phone 16 times, back to back! – I didn’t answer any of them)
Her: Tash!d@ please stop acting like that an just talk to me. If after talking your decision is the same then what can I do.
Her: Will you please talk to me about this? You embraced Adr!an cousin what did I do so terribly wrong???
Her: Just once could you please answer….just once please.
Her: Well it seems like you’ve given up on me like before and like before I’m not giving up on you. If you are upset with me then fine I’ll give you your space but until you tell me why it is that you’re willing to turn your back on our friendship for good I will not let up. Let’s be for real what do I have to lose here. If your done then you’re done but if not your gonna talk to me. Remember its those things we hold closest that we fight for and friendships are not excluded. Love you girl no matter what.

So those were the text….word…for word….and I can’t seem to shake them out of my head and move on!

Monday, December 22, 2008

Gut punch!

So we are on our way to Toledo because DH’s father is in ICU. Its about a 10 hour ride for us. After being on the road for about an hour my best friend texted me. This is my best friend since the 2nd grade so a little over 19 years we have been best friends. She knows my history and all that I’ve been through. So she text me to tell me that she is 6 months pregnant and that she is just now telling me because she didn’t know how to tell me and didn’t want to hurt me. Now that wouldn’t be that bad except this makes the fourth time she has been pregnant during the time I’ve been trying to get pregnant and the 5th oops pregnancy. She aborted one, miscarried one and had one and she got pregnant in the 7th grade and has that one as well, so in all she has 2 kids right now and one on the way. I’ve already been providing and doing for the two that she got to make up for what she don’t have since she is a single mother, so why be so dunn careless. She was like she didn’t want to tell me because she didn’t want to upset me and didn’t think no other time was a good time. Okay really, so you wait a few days before Christmas to tell me about another one of your oops pregnancies like Christmas isn’t already hard enough. Mind you this is all through text message. She didn’t have the balls to tell me face to face or over the phone and she has had the opportunity to do both. She came to visit me I think in August and I went there (FL) and she didn’t mention it or hint at it not one bit. She then has the nerve to tell me that she can’t help God made her fertile and that she would give me her insides if she could. I am so over this so called friendship. In her text she kept saying I was trying to protect you my bestest of best best friend and I was like yeah WTF ever because if I were your bestest of best best friend, I wouldn’t be finding out that you’re 6 months pregnant today through a dunn text message. I told her don’t text me and don’t call me again, because I’m so tired and so done with this. After that she called my phone like 16 times and I ignored every single call. I don’t know if I’m more pissed that she is so freaking careless and in no position to care for another child right now and wasn’t more careful, or the fact that she waited 3 months before the baby was due to tell me. And the reason why she probably told me now is because she is going to our hometown on Friday and maybe she thought word would get back to me some other kind of way. If it hadn’t been for that she probably wouldn’t have told me at all. I tried to explain to DH how I felt, I told him that I felt like I had been gut punched but he doesn’t understand it. The more I sit here on this 10 hour ride and think about all the phone conversations we have had, the visit to Florida I made to go visit her and how she could just sit on the phone with me and act like everything was oh so fine knowing she laying around knocked up by yet another baby daddy. I’m so disgusted with the whole thing the whole idea and this friendship. She then text DH’s phone since I wasn’t responding to her on my phone and told him to tell me that she guess I have given up on her yet again but she wasn’t going to give up on me and if I really didn’t want this friendship anymore that I should at least tell her why and that she would still be there for the birth of her godchild (talking about when I get pregnant). Didn’t respond to that text either. Oh yeah she also said you accepted DH cousin’s pregnancy so whats so wrong that I did for you not to accept mine. Um lets see…maybe the fact that its your 4th one in a matter of how long and all by different men, and you barely make ends meet with the two that you got, you’re careless and you always have been!

Wednesday, December 17, 2008

IVF Consult

Okay so the IVF Consult with Dr. Slayden (Dr. S from here on out) at RBA was today. His office is in Lawrenceville and not at the main office. That is one heck of a ride! 40 minutes north from my job and I live 45 minutes south from my job so the math...that one crazy ride from my house straight to the doctors!

So I left feeling kind of iffy and kind of okay. There were some things he said that I particularly didn't like and some things he said that I liked. So let's start from the beginning.
He started out with small talk about Adr!@n and I and where we were from, what we did for a living, etc.

Then he spends like the next 20 minutes talking about me being a beta-thalessemia carrier and Adr!@n being a sickle-cell carrier, if the two link up it causes Sickle Cell Disease. We knew this already as we went through this with Dr. Perloe my first doctor. He (Dr. Perloe) really wanted us to do PGD so that we wouldn't take the 25% chance that the baby might get Sickle Cell Disease and 75% that the baby wouldn't. After being sent to a genetic counselor to discuss all the horrible things that could happen if we didn't get PGD to test for this, many sleepless nights, prayers and weeks contemplating we decided against doing PGD. Dr. Perloe (who by the way has the worse bed-side manner ever) was clearly pissed with our decision and didn't try to hide that he was pissed. I left this man's office in tears on many occasions! So I let Dr. S continue on with how he felt it was so important and told him that we were thinking about doing PGD anyway to transfer normal embryos back but that Dr. ML had said we could only test for one or the other. We couldn't test for Sickle Cell and test to see if they were normal. Dr. S said that he would speak to the embryologist to see if we could test for that as well as maybe 5 out of the 9 they normally test. Then he goes on to say that they would want at least 10-12 great looking embies before they would want to do PGD which we all know I haven't been getting. He then said I could get pregnant and do some test at 12 weeks to see and if the baby has the disease we could terminate pregnancy, which I immediately shot down as that is NOT an option for me. He then said we could do like 3 IVF's with no transfer to bank embies then do PGD then transfer. That's crazy and by the time that's done I will have done 8 IVF's and that's out the question! So we came to the conclusion if we have enough we will discuss it then and if not, Adr!@n and I are content in our decision we made in the past as it wasn't a decision we made lightly but we took weeks to discuss it, think about it and pray about it. I told him how Dr. P acted when we made our decision and asked him if he would act like that as I can see its something he feels strongly about and he said no. We are two grown people and are both able to make our own decisions he just wanted us to be educated on the decision we were making.

Next topic:

He said that he would want me to go on Depot Lupron for 3 months instead of 2. He said the first month doesn't really count as a month because you're not suppressed your body is just working up to the suppression so it would be more like 2 1/2 months of full Lupron effect.

He said that he sees Dr. ML was looking to do the Flare protocol following the Depot Lupron treatment and that is the wrong choice. He said the Flare protocol wants to capture the LH surge in your body to get the follicles to start growing. But if I've been on Depot Lupron I wont' have ANY LH in my system because the Lupron has shut my body down, which would lead to no response or a horrible response.

He said he would do a protocol similar to what Dr. Perloe did which is the cycle I had my best response on. (HELLOOOOO....Have I not been screaming this to Dr. ML for the past 3 cycles!! Pisses me off!!!!)))) With Dr. P I was on 300 Bravelle which is pure FSH and I was on 75 Menopur which is LH. He said as you can see that's not 50/50 and I would do more 50/50 to hopefully get a better response, because we have to wake your ovaries after being sleep on Depot Lupron. His (Dr. S) protocol for me would be 150 Gonal-F and 150 Menopur twice a day. The last month on Depot Lupron he would put me on a low dose of estrogen (patches) and a low dose of progesterone (I think causing a mock transfer cycle type deal) and then do another endo biopsy so that he has a better feel of how I would respond. He also said that he want to do another SGH a couple of weeks before the biopsy to make sure I don't have any polyops. He will then put me on a low dose of lupron and I would begin stims 28-30 days after my last shot. He said he also noticed that Dr.P had me on a lot of stuff after the transfer like PIO shots, estrogen patches, endometriams (I think that's the name -- the white tablets you stick up in your ya-ya). But anywho he said he would also have me on PIO shots as well as the endometriams to make sure I'm getting enough progesterone.

He said that with no PGD testing he would consider transferring 4 or 5. Which scares the beejezus out of me! I was cool with 3 fresh because I want twins and figured transferring 3 wouldn't be that bad. I was cool when we transferred 4 last time because 2 were frozen and I know that effects the quality of them. But honestly transferring 4 or 5 FRESH....scares me! He said Normal PGD's embryos he would probably transfer 3. He said seeing that I am not okay with terminating a pregnancy he knows I will not be okay with selective reduction so this is something to think about when deciding how many to transfer but given my history he wants to be aggressive.

I asked about the extra folic acid - Folgard, and he said it wouldn't hurt but wouldn't help either. He said I would be on Rhogam or something like that because I have O- blood if I needed it while pregnant and not Folgard.

He said that my bloodtest showed that my Protein S was low and this keeps the blood from clotting. He said that sometimes the tests are not reliable so he will recheck it and if its still low he will put me on Lovanox. I was like funny you mention that because that was one of my questions to ask you. I told him Dr. ML had said she was going to put me on Heparin and he said that stuff is horrible and from the 1950's. (Susan you were correct! xoxo) He said he would test it again if it comes back low he would put me on Lovanox for the first 12 weeks. But also gave me a referral to see Dr. Duncan at Emory Hospital here who is a Hematologist to determine if I need to be on the entire pregnancy and maybe 6 weeks after the pregnancy (Thanks again Susan! xoxo) I have her number and I will call to set up an appointment with her soon.

He said in Nov 07 my FSH was 11.7 which is high and high normally means decreased egg quality. No one ever told me my FSH was high...hum. He said in women under 30 high normally doesn't carry any weight, it normally matters in older women, but since I don't respond like younger women, he would keep an eye on it. Can't get it tested again before cycling because I will be on Lupron.

Oh yeah he wants me to start Lupron TONIGHT! He said if we waited till day 3 of my cycle like Dr. ML was going to do that it surges the ovaries and make follicles and that's the opposite effect that we want. So he said right now in the lutheal phase of my cycle is the best time to start. He told me to take a pregnancy test but even if I did, it would be too early to tell anything, but what are the chances of that happening I'm not worried about that.

He sent me to get bloodwork. Ended up getting 8 tubes done! He is checking:
-Progesterone (guess to make sure its functioning correctly since I already ovulated) -CA-125 which is a level check and they can use it as a marker. With Endometriosis it's normally higher and he will want to check it again after my Depot Lupron treatment to see if it has decreased. He said with some women it does decrease and some women it doesn't....but he still wanted to check.
-Thyroid because of my mother having issues with it -Something about Claumidia. He said even though I have never tested positive for it, he said sometimes he notice women with Endo sometimes have had it and the anti-body for Claumidia could still be in the bloodstream and if so he would want to treat that with a strong Anti-body for 2 weeks.
-Protein S - blood clotting
And some other things that I can't remember.

Okay so the things that I didn't like......

He talked about donor eggs the first time meeting me. I know I got a few cycles under my belt but clearly the protocol I've been on the past few cycles hasn't been the best for me. I say no, I'm not ready for that and he says good, because I didn't want you to go that route. Then why did you bring it up in the first place!

2nd he brings up gestational surrogacy on our first meeting. I cut him off before he can even get it out his mouth good as he is saying I'm not sure if you're aware of this. I tell him I'm fully aware of it as my husband always brings it up and it's an argument every time. He said, oh okay I see. I just wanted to mention it because a lot of women have never thought about it and when I mention it to them they say wow I can do that I've had people offer to carry for me. I was like well yeah I've had people offer to carry for me too, but its not what I want to do. He says again.....good because I didn't want you to. Then why did you mention it then!

These two points didn't come up at the end and they didn't come up at the same time, but I just saved them for the end.

I think that's about it. He (Dr. S) gave us the okay to have Adr!@n give me my Lupron shot, so we will attempt that tonight.

Oh yeah my Endo Biopsy came back normal - can't remember if I shared that already and my Karyotype results came back normal. Still waiting on Adr!@n's Karyotype results.

So that's that. Even with the 3 months of Lupron we're still aiming for a March IVF!

Tuesday, December 9, 2008

My plan....

Well my plan is not working out too well. Dr. Ory in FL doesn't do phone consults, wants to see all his patients in person for the consult. I'm not going all the way to FL to meet him and I may not like him or what he has to say. Dr. Levy will do a phone consult but they are already in the January appointment booking, so I'm not sure what I'm going to do about that.

What I'm thinking is I may just swtich to Dr. Toledo at RBA and if it doesn't work this time with the Lupron then look at going to Dr. Levy depending on his Endo back ground or to Dr. Sher for the next attempt.

Monday, December 8, 2008

More Thoughts for the day

One of the girls on another board gave me Integramed website address, I had never heard of this before but I was able to find an article about Endo and the article was written by Surrey and Ory and at the end of the article it had links to Surrey and Ory so I figured if this guy is on the same article with Surrey they must be on the same page. He is in FL. (For those that don't know. Surrey is at CCRM and I would like to cycle with him as he is knowledgeable on Endo, but CCRM is not covered by my insurance).

So I submitted a request for an appointment with Dr. Ory as he seems knowledgeable on Endo.

I submitted a request for an appointment with Dr. Levy at Shady Grove Fertility that one of my fellow FFs recommended.

And I also have a request in at RBA to have a consult with Dr. Toledo who is the doctor that was going to do my transfer last time that suggested me going on Depot Lupron for two months. He said that he had amazing results doing this protocol. But lying naked on the transfer table really wasn't the best time to be having this conversation with him. RBA called and left me a message and said I have to fill out this form requesting to change doctors and both doctors have to sign off on it and she said that I shouldn't feel bad about it because it happens all the time at the clinic.

I really want to try the Lupron Depot because even the article written by Surrey & Ory said "Traditional medical therapies, for example Lupron or Danazol, do not enhance pregnancy rates when given alone," says Surrey. "However, we have recently shown that pre-treatment of endometriosis patients with Lupron prior to an IVF cycle significantly improved IVF pregnancy rates."

And even Dr. Toledo at RBA said the same even if I haven't made a decision who I'm going to go with to cycle with I can still do my injection at the end of December as planned because my OB/GYN said they would give me the injection.

As this is not a last result attempt for me, I don't think CGH is a pressing issue for me right now which Dr. Sher at SIRM is pushing. Especially after what I read about the Micro-Dose Lupron last night (recap here). I think I just need to find someone who will get my protocol right. If I do 2 more cycles and still nothing has worked then I think I would want CGH. I still may get PGD done with this cycle just to know we are putting normal ones back.

Response to Anonymous...

Anonymous: Funny you mention that, as Dr. T is the one that originally recommended at my last transfer about doing the Depot Lupron. I just didn't know if it would feel funny switching to him at the same clinic. Maybe funny is not the right word but 'bad air' like would Dr. ML get mad. But you know at this point I shouldn't even care.

But what I'm trying to decide is should I switch to Dr. T or switch clinics all together.

Email Tag...

From me to Nurse:

Good Morning Nancy ,

I’ve spent my weekend Googling different things concerning IVF after having another phone consultation with a doctor based in Las Vegas . He suggested that Micro-Flare Protocol was the worst protocol that a patient with Endometriosis could be on. This is what triggered my endless internet searching this weekend.

However, I couldn’t find anything to support his comment but I did find the suggested dosage for those on Micro-Flare protocol:

This is from - the Micro-Dose Lupron 0.2 cc (40 μg), every 12 hours, and
continue daily, until time of hCG. Please Note: Micro-Dose Lupron is a special diluted
Lupron prepared by mixing 0.4 cc (2 mg) of standard Lupron with 10 cc of normal saline.
This will be prepared by our office or your pharmacy.

This is from - Start Lupron on the third pill free day. We use a 50ug dose of Lupron twice daily -AM and PM- for these flare cycles. 50ug is a very small dose as compared to the usual Long Lupron protocol dose of 0.5mg (500ug). The Lupron needs to be diluted by the pharmacy or the doctor's office in order to be able to inject such a low dose.

This is from
F.Y.I. Lupron Dose Equivalents:
0.25 mg = 5 units (Ta) = .05cc
0.5 mg – 10 units (IU) = .1cc
1.0 mg = 20 units (IU) = .2cc
If you are on a “micro-dose” Lupron, stimulation, most likely it will come pre-mixed, if not we will dilute the Lupron for you.

You may be wondering why this is important. After reading the dosages above, I go to my refrigerator and pull out my box of Lupron. It is the regular Leuprolide Acetate Injection 1mg/0.2mL and not the diluted Lupron that should be used for Micro-Flare. So all this time I’ve thought I was on the Micro-Flare Protocol I have actually been injecting 20 units of regular full strength Lupron. This explains why I wasn’t getting a response to Follistim and also explains why it was taking a full 7 days of stims before getting any response from the stimulation drugs.

I am having a hard time understanding how this could happen two cycles in a row without it being caught by anyone. I was under the impression the Lupron that I picked up from Concord Pharmacy that was ordered for me was the Micro-Flare Lupron I needed for my cycle and all I needed to do was follow my instructions given to me. I feel that this is a huge oops by someone and it explains a lot. Injecting that much of a dose at the beginning of a stim cycle would definitely shut down the ovaries and possibly damage the eggs trying to grow which could explain the back to back chemicals since all my other testing are proving to be normal.
As I’m having a hard time trying to figure out how this happened, I’m hoping that you can explain to me what happened.


From Nurse to Me:

Hi Tash!d@ – I don’t know where you got the idea you were on a micro-dose flare protocol. You were on a modified flare. Micro-dose flare is usually used on low responders – which has not been your problem. I am happy to pass on this information to Dr. Mitchell, but if you have questions about your protocol, you may want to gather all your information and come in to talk to her again – just so she can explain what she has prescribed for you and why she chose this protocol. Just give Stephanie a call if you want to set something up. Thanks. Nancy .

From Me to Nurse:

Hi Nancy,

I got it from Dr. ML as in all her consults with me she said Micro-Dose Flare which she said she was using after my Nov 1, 07 cycle for a better response. Not one time have I heard modified flare in any of my consults with her. I was told I was on Micro-Dose for Feb and Sept. Even in the follow-up I just had with her MDF was mentioned again.

From Nurse to Me:

Tash!d@ – I had Dr. Mitchell read your letter, and in 7 years of working for her, I have never done a micro-dose flare protocol – and she just doesn’t do them, so I’m not sure where the confusion came in, but I think it might be good for you to come talk to Dr. Mitchell so we can clear all of this up. Nancy.

So right now, I don't know what to think, what to feel, and still don't know what to do!

Sunday, December 7, 2008

What a mistake......

So I think I have made my decision. ……

I was googling Micro-Flare Lupron Protocol trying to see if I could find some information to support what Dr. Sher told me about it being bad for those with endo. However, what I found is the dose that you should be on when doing the Micro-Flaore Lupron Protocol.

This is from - the Micro-Dose Lupron 0.2 cc (40 μg), every 12 hours, and
continue daily, until time of hCG. Please Note: Micro-Dose Lupron is a special diluted
Lupron prepared by mixing 0.4 cc (2 mg) of standard Lupron with 10 cc of normal saline.
This will be prepared by our office or your pharmacy.

This is from - Start Lupron on the third pill free day. We use a 50ug dose of Lupron twice daily -AM and PM- for these flare cycles. 50ug is a very small dose as compared to the usual Long Lupron protocol dose of 0.5mg (500ug). The Lupron needs to be diluted by the pharmacy or the doctor's office in order to be able to inject such a low dose.

This is from –
F.Y.I. Lupron Dose Equivalents:
0.25 mg = 5 units (Ta) = .05cc
0.5 mg – 10 units (IU) = .1cc
1.0 mg = 20 units (IU) = .2cc
If you are on a “micro-dose” Lupron, stimulation, most likely it will come pre-mixed, if not we will dilute the Lupron for you.

This is a question asked to one of those doctor websites: Dear doctor, I`m currently under my first IVF treatment using Microdose Lupron Protocol. However, I mistakenly got a regular-dose (1mg/0.2ml, 20 units per injection) Lupron administration kit from a pharmacy, and it is 20 times stronger than the micro-dose (50mcg/0.2cc). After 11 wrong shots in 5.5 days, this mistake was found out during a recent checkup, as my ovaries seemed a bit "quiet" and the estrogen level was 65.8. My doctor suggested to continue this IVF cycle with a slightly modified protocol (i.e., no more Lupron, but add 150 UI more Follistim per day). Then he`ll see how my ovaries to response. Yet, he also leaves the option for me to stop this cycle completely if I don`t feel comfortable to continue. In order to have a third party opinion and more confidence, I`d like to hear from you about how badly this mistake would affect my final chance of getting pregnant. Your help is very much appreciated!!!

Now you may be wondering why this is important. It is important because for the past 2 cycles, I have had a horrible response and for the past two cycles I have been doing the Micro-Flare Protocol….or so I thought I was. I just pulled my Lupron box out the refrigerator to look at it after reading everything above. And you guessed it…..I was on the Lupron 1mg/0.2ml as the lady above. Nowhere near the Micro-Flare Protocol I should have been on or was supposed to be on. So instead of doing a flare injection I was injecting 20 units of regular Lupron and not Micro-Flare Lupron (a diluted version of lupron). Now I sit and ask myself how can this happen not once but twice in a row. I’m kicking myself now for not noticing it sooner, but I’m the patient and the doctors get paid thousands to do their job correct right?!? Maybe this is the reason why my response has been so horrible. Maybe this is the reason my ovaries didn't start to respond until after 8 days of stims. How could they respond when I’ve confused the mess out of them by injecting quadruple the amount I should have been injecting into them.

How could this go unnoticed for 2 cycles in a row? How could no one catch the fact that I was never on a diluted version of lupron…!?

Saturday, December 6, 2008

Still so confused......

Thank you all very much for your comments and suggestions. I am still very unsure about what to do. Hubby suggested maybe cycling with Dr. ML this last time and if it doesn’t work then go to Dr. Sher. I just don’t know what to do.

I don’t know why this has to be so hard. I don’t want to choose the wrong decision that leaves me baby-less any longer than I already have been. However, I’m conscious that infertility is a game of luck and chance and even the cycles that everything works out perfect can still end with a BFN.

I just can’t help but to think maybe, just maybe the changes we planned on making this time could/maybe/possibly do the trick. Maybe the lupron was all I needed; maybe the heparin was all I needed….maybe adding those two things still wouldn’t be all I needed.

UGGGGHHHHH I don’t know what to do!!!!

I want so much to be a mom, I want so much to feel this little being moving inside of me, to look into his or her face and see my hubby and me. I’m tired of being disappointed and tired of waiting. It’s always a waiting game, waiting, waiting and more waiting! If I stay with RBA I’m waiting for 2 months while on Lurpon, if I go to Sher, I cycle in February but then wait 6-8 weeks to find out if any at all are even normal. No matter which way I go there is a wait, one wait is dreadfully/horribly/painfully longer than the other, but could very well be well worth the wait.


Friday, December 5, 2008

My head is spinning....WWYD????

My head is spinning now. Not sure what to do. When I thought for sure I had a plan I wanted to do…..I have a phone consultation with Dr. Sher founder of SIRM and now I’m so confused!

Dr. Sher started out by going over my history and what he made of my history as he took the time to go through my medical files before speaking to me.

First thing he said is the Micro-Flare Protocol you have been on is the wrong protocol and actually the worse protocol you could ever be on. He said women with Endometriosis like you have similar symptoms to women who have PCOS. He said the Micro-Flare causes too much LH which causes too much testosterone which damages the eggs. He said this is the reason they can be measuring over 20 follicles for you but then only getting 2 to fertilize. He said that the Micro Flare combined with my Endo causes abnormal eggs and the ones that do fertilize are chromosomally abnormal which causes chemical pregnancies or miscarriages. I told him I knew something wasn’t right with my protocol and I thought it was Follistim causing such a horrible response and he said no it was the protocol you were using. He said Follistim is a great drug, but the Bravelle you were on your first cycle is a horrible drug and it shouldn’t be used. He said my previous protocols have not been catered to meet me and my needs. They have been protocols used that worked for others but because I have specific areas of concern like the Stage IV Endo, I need to be on a recipe (protocol) that is catered specifically for me.

He recommends doing a down regulation protocol with me being on long lupron and coasting. He said he sees that my E2 normally skyrockets to the point of overstimming and he would like to utilize coasting with me. He said you have to be experienced with coasting in order for it to work right because if done wrong it too can damage the eggs. He said I would be watched closely and when he got me to the point he wanted me at he would coast me the rest of the way to get the eggs to the size he wanted them.

He said that PGD would NOT help us. He said it’s still a 50/50 chance that we get an abnormal embryo and right now he think our problem is an embryo issue and not so much the endometriosis effecting implantation. He said with PGD you only get 1 chromosome out to test but its 3 others left that could still have issues. He recommends that we get CGH testing done which tests ALL the chromosomes in the embryo to see if all the chromosomes are normal. He said it costs the same as PGD does but is way better because of the results it gives. He said those doing CGH leave with a baby 70% of the time. He said it takes 6-8 weeks to get the results back and the embryos would be frozen during this time. Not like regular embryo freezing but some other method that doesn’t do the damage that normal freezing does. Don’t remember the exact name he used, but he said regular freezing allows damage to the cell because ice get into the cells and degrade the embryo some. This technique they use doesn’t. So after waiting 6-8 weeks for the results I will then go back to Vegas for the transfer. I asked how many he would transfer. He said using CGH you only need to transfer 1 to get 1 baby. I said given our history I would feel better transferring more. He said well if you want twins we can transfer 2. He said but given your history we will look at the normal CGH’d embryos and decide then if its better to transfer 2 or 3.

He also said given the fact that my mom is on Thyroid medicine daily it’s a 1 in 4 chance that she passed that genetic problem to me as well. He said with Thyroid issues you normally have natural killer cells which will attack whatever is trying to implant which will cause a chemical or miscarriage. He said they have medicine that can prevent it from happening but that he would want to do an extensive immune testing to figure out what to do concerning that.

Now that brings me to…..WHAT TO DO?

My husband was like change is good, and he is coming with a lot of change which we haven’t had any of the previous cycles. He was like the only change Dr.ML is making are the changes that you suggested which is going on the Lupron and changing up the meds.

Oh yeah I told him my plans of starting on Lupron Depot and he said no, do not go on that, no that is not good, no do not do it. He said Lupron Depot stops your ovaries completely. He said it stops your body from making estrogen which interferes with having a healthy endometrium for implantation when you start your cycle.

I’m so confused….I just don’t know what would be best now. I would hate to go through another cycle with Dr. ML and face yet another chemical, but what if the lupron really does help….But what if the endo is not the problem and it really is my embryos. Dr. ML isn’t doing anything to help with my embryos and we were only doing PGD because I asked to do it and its still that 50/50 chance, and we were only changing to Gonal F because I asked to do. I feel like with Dr.ML she lets me make the calls and I’m not the doctor but with Dr. Sher he is taking the role as the doctor and telling me what will be best and not me telling him what I think would be best.

Whatever I’m going to do I need to decide quick, so I cancel my Lupron order if I’m deciding to go with Dr. Sher……..

Dr. Sher sent me an email with 28 attachments that he said he wanted me to read, so I’m about to spend my Friday night reading through this stuff and maybe it will help me make a decision.

That’s another thing I liked about Dr. Sher. He shed more light on my history in 40 minutes than Dr. ML has done the 2 years I’ve been with her. He sends me information for me to read up on things and not the other way around like I have been doing Dr. ML. uggghhh….I don’t know………..

Thursday, December 4, 2008

SHG Today

Got my SHG done today. It did hurt, not the procedure itself but putting the speculum in hurts the worst in my opinion. I did feel some cramping when the catheter went in, quick process then over. But the good news is she said it was normal and she was very happy with how my uterus looked.

I have a timeline for my next IVF:

Dec 28th – 1st Lupron Depot Injection
Jan 23rd – 2nd Lupron Depot Injection
Feb 18th – Start BCPs for 10 days
Feb 27th – Last BCP
March 2nd – AF starts / Baseline
March 3rd – Start Injections
March 14th – Tentative ER
March 19th – Tentative ET

I will then be on 300iu Gonal F in the a.m. and 225iu Gonal F and 75iu Menopur in the p.m. I requested the Menopur be added as it is something I was on for my first cycle and I had a good response. I’m not sure if it was because of the Bravelle or the Menopur or the combination together, but what I’m sure of is that I did not like the response I got from Follistim. I requested to go back to Bravelle as well, but my doctor was adamant about not putting me on it, as she hates the drug and has had no good experiences from it. So I’m hoping that the change from Follistim to Gonal F and adding in Menopur will give me a better response. I’m also hoping for more mature follicles, and for more to fertilize so that we can get PGD done.

I’m starting to get excited about it now. Still seems so far away but seeming more real now as I’ve had to go to the doctor so much lately.

I’m really praying that being on the Lupron Depot for 2 months will be the trick I need to get pregnant and stay pregnant.

I have a phone consultation with Dr. Sher at SIRM in NY tomorrow to get his opinion about my history and what he would do differently. Will update about what he said tomorrow.

Wednesday, December 3, 2008

Lupron Drama

Well for me. Got my results back from my Endo Biopsy and all is normal. Which is good news....I suppose. So what is the reason for the chemicals....thats what I want to know!

I was supposed to start Depot Lupron for 2 months on Monday and it has been a complete disaster trying to get that started and getting insurance to cover it. Finally thinking I got a break through went to the doctor this morning to get the injection (mind you to an appointment that was made specifically for the injection) only to get there and after 40 minutes of waiting to be told that they don't have the medicine and that they don't keep it in stock nor do they order it. Long story short the Lupron for one month will cost $650 so for 2 months thats $1300 out of pocket as the insurance doesn't cover it. So I'm debating just canceling that idea all together and cycling in Jan. So hubby asked the question, what will be done different that wasn't done the past 2 times that you had a chemical and it didn't work and this is all I can come up with:

  • Switch my meds up to a different brand
  • Start me out on the max dose instead of gradually increasing
  • Have my largest mature go to size 21-22 instead of 18 so we can have more that are mature.
  • If we have enough fertilize do PGD
  • Take Heparin instead of Baby Aspirin which they give those who have frequent miscarriages
  • Endometrial Biopsy that came back clear
  • Karyotyping testing which will confirm if we NEED PGD

Is this enough to go out on the limb and try IVF again......or should we really dish out $1300 for an experiment on Lupron.....ugghhh...

That was a post from this morning. Update now, is that I found some Lupron in Canada that is much cheaper than it is here in the US. I bought the two that I need for the two months including shipping and it came to $599.97 instead of $1300. So I will start my shots when my next period start which is around Christmas Eve or Christmas Day. I was a little upset about being pushed back, but what can you do. After dealing with IF for over 5 years you learn that things never work out the way you want them to.