***Hanging on to Dream Check in 10/1***

princessisadora

Welcome to "Hanging On To a Dream!" This group is designed as a check-in for those that are not currently part of a monthly IVF cycling group but would like some camaraderie while waiting to cycle for any reason. Please join us if your monthly cycling group has not started and tell us how you are doing. Please also let us know if you are (1) waiting for 1st cycle; (2) in between cycles; or (3) on hold for whatever reason. Please also tell us what your next plans are (IVF with ICSI, FET, WTF appt. etc.) and what month you hope to cycle. 

QOTW: Let's talk about dirty lil secrets. What is your guilty pleasure?

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Check-In leader PrincessIsadora

Posted every Wednesday

Waiting for 1st Cycle

ddvj79 (break before IVF #1)

germangirl6988 (RE consult for a plan)
jen102279 (IVF#1 in 2-3 months)
jodiboch (IVF/ICSI #1)
kushie77 (making decisions)

lebradford (IVF #1 Nov-Jan)

nariadreaming (November IVF #1)

rumbera28 (Dembryo/DE late Fall)

sunni01 (IVF#1 Sept/Oct)

tweetyknicks (RE appt 9/22)

In Between Cycles

amyelise25 (Summer FET #1)

callalily30 (October IVF#3)

carol77b (Late Fall Early Winter IVF#4)

cml11 (WTF appt)

crmhoney (FET #2 soon)

exoticantibiotic (on break)

jetta83306 (WTF appt then IVF#3)

katemonster1 (break until Fall)

missmarypoppins (Dr. KK 7/1)

mozzerella13 (IVF #3)

o2girl (Oct. FET #2)
princessisadora (RLP and genetic panel? IUI#2 before IVF#2?)

runcc37 (Dr. KK in Sept., DE IVF #1 looking for match)

shellbeans82 (IVF#3 November)

spring78 (Oct? FET)

tabbytown (Nov. IVF#4)

tea+ (not sure IVF#2)
tptbabe (IVF/ICSI #2 December or January)
twinkie0612 (f/u with Dr. KK in Sept)

zenysom (Sept IUI,  appt with Dr. KK)

Moved on to October Autumn Acorns

katemonster1

CallaLily30

Chicory

Big (((((Hugs))))):

Welcome new members!

notasycophant

carrieharry79

Kcheese

AngM123

stace2524

tbj1

princessisadora

Good Morning Ladies! 

Hope you are all doing well.

New members, welcome! Give me a shout out about your plans(if you have some already ) so I can update you.

Anyone else that needs an update please let me know

Nothing really new on my neck of the woods. Had an RE consult scheduled for today but after talking to my nutrionist and talking about my fear of being dismissed again by the RE because my BMI is not below 30, we both decided it was best to cancel and re-asses in 2 more weeks.

We are still trying on our own. We are not very hopeful but we just cannot try while we are in this waiting game to see what the new recommendation is in light of all that has happened since May. 

QOTW: My guilty pleasure is horrible reality TV . I particularly enjoy the ones that people have to compete for something. I found a gem on Netflix called Bridalplasty it is so awful it is good!! I also like Miley Cyrus song "We can't stop" Oh the shame. 

Spring78

Hi all, Thanks for managing this check-in, princessisadora! FWIW, with all due respect, if your RE is dismissive of you for your BMI, dump his stupid arse and find a new one who sees the whole picture and is less fixated on a number that studies have shown is fairly meaningless anyway. Yes, losing weight can help if you are significantly obese... But it is not the end all and be all. But that's just my 2 cents. ;-) Seriously, though, sorry you are dealing with that and the stress it must add to the situation. ((hugs)) AFM: I am set to start Lupron next week for an early November FET. Trying to decide if I am going through with it or going to postpone due to other life circumstances. I mentioned it on an earlier check-in and I posted a long explanation on TTCAL, so won't go into detail here. The thumb nail sketch is my MIL likely has ovarian cancer and goes in for surgery in 2 weeks, after which we will know more. This is going to be an incredibly stressful time. Is it wise to add an FET and that stress on top of it? Of course, if it is ovarian cancer, things will not be any less stressful anytime soon... QOTD: Hmmm... Guilty pleasures... Cheesy SciFi TV, fantasy novels and Def Leppard. Not sure which is worse... ;-)

Carol77B

@princessisadora I'm so sorry you are dealing with that concern. Sending you hugs.

@Spring78 that is very scary about your MIL, I'm very sorry. I have no advice, but sending thoughts and prayers your way.

AFM- we had our follow-up with the RE after my husband's visit with the urologist (some of you may remember me complaining about the idiot who told my husband it was my fault I wasn't pregnant- apparently he also told my husband that we should have sex more often to keep the count up! I told him that he could take care of himself but wasn't going to be worrying about that once I start injecting myself with high doses of hormones).

Anyway, it appears that with our last IVF my husband's sperm count was 10 times what it had been the four or five previous times it was checked. So we are going to see if that was a fluke or if things are better. If he has spontaneously started having better counts, we'll do fresh and PICSI. If it was a fluke we'll do an extraction, hopefully on the same day as ER. I would rather we just do an extraction from what I've read about DNA fragmentation (which isn't something his stupid urologist bothered to check). Also, we still didn't have a viable pregnancy with his high count with IVF#3, so I really want us to try something different. So strangely, I'm hoping for bad numbers with his next SA so that we do a PESE or TESE.

As for me, my RE thinks we should stick with the antagonist protocol and the implantation protocol and doesn't think we should bother with HGH, because of the expense and what he thinks are limited benefits. He is considering trying HCG. I'm a little confused as to whether he meant instead of the Menopur or in addition and when he would actually make that call. But we are assuming we'll be cycling in November. I'm going to have an endo scratch after AF this month, then start the Estrogen Priming Protocol after I have my LH surge. So should start stimming in mid-Nov.

I did get to see my CD3 test results compared to about a year ago and they are much better! I really think the supplements and lifestyle changes I've incorporated since July have made all the difference. I am following almost all the recommendations from "It Starts With the Egg" and my AMH went from 1.3 to 1.7 and my FSH went from 10.1 to 6.4. And my AFC was 16 vs 12. Strangely, my RE tried to down play the improvements, but I'm super happy and much more optimistic about IVF#4 than I had been.

A few things my RE mentioned surprised me. There is a minimum number of sperm necessary for them to do PICSI and he doesn't think they did PICS with my last two IVFs (which doesn't make much sense since we, apparently, had such a higher count for IVF#3- though I almost wonder if there isn't a typo in the records...that it was 4.3 mil vs 43 mil, but we'll see what the repeat SA shows). Also, he said that with "healthy" sperm only about 50% survive thawing if you have frozen and the number would be worse with "unhealthy" sperm.

Oh, and my record said that I should be taking Omega 3 in addition to the DHEA and CoQ10 they specifically recommended, which is news to me, so I'll add that into the dozen or so supplements I'm currently taking 

Sorry for the novel!     

Twinkie0612

@princessisadora I'm sorry you have been dismissed by your RE. While I think it's great that you are working on your weight, it is not the end all be all. My RI has been on me to get my BMI under 25. I've been working really hard and still have about 8 lbs to lose. While I think getting weight to a healthier level is important but I am not going to stress or cancel my cycle if I don't get there. For me BMI is a guideline, not the bible.

@spring78 T&P for your MIL.

@Carol77B sounds like a great plan coming together!

Twinkie0612

My calendar review was supposed to be today, but got pushed back to Monday because my nurse is on jury duty. I did talk to a different nurse and found out I start prednisone in one week, which is a week earlier than usual since Dr. KK wants me to be on it 3 weeks before the start of my cycle. I will have blood tests done 2 weeks after starting too see how much the prednisone improved my NK and cytokine numbers. My baseline will be the end of the month and I start stims and lovenox on November 3rd and will do my u/s with Dr. KK on November 7th.

I'm still waiting to hear back from Dr. KK's office to verify my IVIG coverage, set up my blood work (I'll do locally and have it overnighted to their lab), and to see if I can get a flu shot. Oh and still haven't heard anything from the financial lady about resubmitting my blood work.

QOTD: My guilty pleasure is smutty romance novels.

carrieharry79

princessisadora - You can add me to the "waiting for 1st cycle. (November 2014)" I'm sorry about the issues with your RE. I feel like losing weight is really hard and when you're stressed out over infertility stuff, focusing on that is nearly impossible. I'm not making excuses, but I can relate. Good luck!

So I am waiting to start my next cycle to start the whole drug process.... as crappy as it sounds like it will be, I am so anxious for it to just start. I got IVF approved by my insurance yesterday and am ready to go now whenever I get my period. I have a very unreliable schedule, but it could be as early as next Monday. Fingers crossed it's on the earlier side. 

I'm feeling very lucky to have insurance that covers IVF through my job (and required by my state). I can't even imagine if this was costing us a fortune on top of the emotional toll. I'm sad for everyone who isn't as lucky. Even sadder for those who simply can't try IVF because of the cost. 

Hopefully next week I will be starting the process (and I assume heading to another group?)  Not really sure how that works. 

princessisadora

Oh believe me ladies I know it's absolute shit to get dismissed because of my BMI. Specially since this RE was the one I went to for a second opinion. You may wonder why I am I even considering a follow up and quite simply (unfortunately ) it's because of money. This clinic is the biggest in my area, they price match and I just can't walk away without knowing how much a cycle with them would cost. Unfortunately being OOP I can't overlook any options.
I have set myself a goal or maybe it's more a guideline, I just don't want to do any more procedures until I have lost a total of 30 lb. Only 3 more to go

AngM123

I am officially on the books to start BCPs after next AF which will be mid October! I am terrified... But excited. I think the hardest part of this for me is that I have yet to consistently feel any which way. Some days I'm ready to tackle this shit like superwoman and would start today if I could. Other days I cry thinking about all the $ and wonder what I have gotten myself into, because there is no way I can do this. Its strange, I've never been so indecisive in my life. But, with that being said, it is time to move forward in life, and this is the next step. IVF in November

tbj1

****Warning (child mentioned)******

Hi everyone!

Nothing new to report. Me and DH will be trying on our own for now until IVF # 2 in January. My co-worker just came back from maternity leave and all anybody talks about is her new baby etc. I'm happy for her, but at the same time just a little bitter. I can't wait until this week is over. Have a great evening ladies.

QOTD: I am addicted to trash TV. Housewives shows and Love and Hip Hop.

stace2524

Just hanging out with my BCPs, waiting for IVF in November.

QOTW: My guilty pleasures are Haribo gummy bears, McDonald's french fries dipped in chocolate shake, erotic novels and all movies with Vin Diesel. 

ChristieH917

Good morning ladies!  

@Spring78  Sorry about your MIL.  Picking the right time for an IVF cycle is so hard.  I feel like there is always something that makes me question if I am making the right decision. 

@princessisadora  I have to agree with others.  It can't hurt to at least consult with a new RE to get a fresh prospective.  

@tabbytown  I hope you get the answers and reassurance that you are looking for. 

@Carol77B  Great increase in his numbers!!  

@tbj1  I completely understand.  I am happy for others, but it is so hard to hear about it all the time.  

@AngM123 and @carrieharry79Yeah!!!  Good luck in November!

I have a WTF appointment scheduled for Oct 22nd.  I also looking into getting a second opinion.  

QOTW:  My guilty pleasure is my stash of chocolate in my desk drawer.  My hubby was recently diagnosed with diabetes so candy and chocolate has been banned from the house.  Shhh... don't tell him!

Jetta83306

Hi ladies. Not much new here. Just waiting for January to get here for our Donor Egg IVF.

.Mrs.Matt.

Hello, everyone! Could I be added to this check in, please? I am currently waiting for our consult appt next Wednesday, and we are on the ivf schedule for January.

There has been some worry that dh would be on an international work trip during the time we need him for the procedures, but it's looking like everything will work out, which is a relief. We have soo much time until January, it would suck to bump it forward another month...

Dh also has his urologist appt next week to discuss his high levels of white blood cells. He's not excited.

I also started a personal blog to be shared with family and friends after ivf, regardless of whether it works or not. I'm still shocked by how much better I feel already!! I should have started it long time ago

Kcheese

@princessisadora- So sorry your RE made you feel that way.

@Spring78- Sending thoughts & prayers your way.

@AngM123- I'm on that same emotional rollercoaster!

Not much new here.  I have my IVF consult on Monday!  It's so close!  Excited & nervous.  Ready to get this show on the road.

QOTW: Scratch off lottery tickets- I always lose, but it's so much fun

RunCC37

Hi Ladies

@princessisadora - you are SO CLOSE to your goal!! Keep it up!! Also, you can change my line to read:

RunCC37 (DE IVF + Dr. KK in November)

Thanks!

My update..... where to start. Dr. KK follow-up was on Monday. Wowzers! We have quite a bit to work on... Protein S deficiency, blood coagulation disorder, white blood cell disorder, gammopathy, Sjogren's syndrome, disorder of connective tissue... at least this is what my patient portal says. Doc recommended a bunch of supplements and meds to add to our DE protocol. 

I am seeing a rheumatologist to get a full evaluation as recommended by Dr. KK. My ANAs were a strong positive, so there could be an autoimmune disease. We'll see. I'm also seeing a nutritionist to get some pointers on a low-carb diet while maintaining my current BMI. I am completely lost, and my carb-rich diet as a marathoner is already greatly missed (they were mostly good carbs with exception to the ice cream).

We are proceeding with our DE IVF cycle, and I'll go on BCPs as soon as CD1 comes around. I am thinking sometime this weekend. I have to do some follow-up with Dr. KK to see how the supplements & meds are working, and we are fully prepared to do a freeze-all with the donor if my uterus needs more time to get in order before mid-November when our donor should be having the ER. 

emmuffy

Hey, can I be added again? I'm in between cycles. I've booked a second opinion with a new RE on Oct 15.

tptbabe

@princessisadora - I'm sorry you're feeling that way with your RE I struggle with my weight as well, and I know that I feel badly about it myself, so the last thing I need is somebody else harassing me about it! You're doing amazing though, and only three pounds to go!!!!

@Spring78 - I'm sorry you're going through so much stress right now. I hope your MILs surgery goes well and gets some good news!

@Carol77B - Yay for improvement!!! I ordered "It Starts With the Egg" over a month ago and am still waiting for it to come in Your news gives me hope! I wasn't aware that there was a minimum count for PICSI? We're planning that for our next cycle, and our RE didn't say anything about a minimum. Do you know what the minimum is by any chance?

@Twinkie0612 - Gosh that sounds so busy! Hopefully you hear back from the finance person soon, and you get the IVIG covered!

@Carrieharry79 - That's awesome that you get insurance coverage! Good luck moving forward with your cycle

@tabbytown - Good luck with your appointment next week! I'm sorry you're feeling down, and I hope this new RE is able to give you some hope \

@AngM123 - Good luck with your cycle! I found it much less stressful once we got started, since I had a goal, and things to focus on daily, rather than the constant worry and "what if"s.

@tbj1 - (((HUGS))) Thank goodness it's Friday!

@stace2524 - Waiting is the worst! November is NEXT MONTH though  Yay!!!

@ChristieH917 - Good luck with your WTF! I don't think anybody ever regretted a second opinion, so I'd say go for it!

@Jetta83306 - Ugh, that's so far away! We're cycling around the same time

@.Mrs.Matt. - Glad everything is working out! Is this your DHs first urology appointment? I've been to most of DHs, and they're really not too bad. I think DH stresses himself out over them, but if it's *just* about the white blood cells, hopefully he won't have to "turn and cough"

@Kcheese - Only 3 more days!!!

@RunCC37 - Yay for answers!!!!!!!!!!! I'm glad Dr KK is working with you

@emmuffy - Welcome back, though I wish you weren't! Good luck with the new RE!

@lemonliz - Welcome!

 

AFM - Sorry to up and leave you guys, we just got back from vacation and it was glorious! I found out that my referral to the nutritionist came through while we were away and my first appointment is on the 22nd I'm hoping that DH and I can both get some better ideas on how to manage our diets with all the new restrictions (DH has liver disease and I'm an autoimmune cesspool). I'm starting acupuncture up again soon in preparation for cycling in January/February, using a long Lupron protocol and PICSI this time. Hopefully that does the trick?

 

 

 

Carol77B

tptbabe My RE said the minimum was at least 1 mil for PICSI, but right now I'm discovering that things are either really screwy with my records, or the labs, or the lab reports, or a combo. I was told twice we didn't have PICSI (I asked to have that confirmed) then I demand (nicely) to know why not, if we had somewhere between 4-6 mil with IVF #2 and 46 mil with IVF #3 if the min threshold was 1 mil. So now I hear, oh yeah, you did get PICSI with both. So I'm both irritated and freaked out about why they don't seem to know exactly what happened.  And I'm starting to have some trust issues with my RE/clinic which is stressing me out as I'm gearing up for IVF #4.

tptbabe

Carol77B said:

tptbabe My RE said the minimum was at least 1 mil for PICSI, but right now I'm discovering that things are either really screwy with my records, or the labs, or the lab reports, or a combo. I was told twice we didn't have PICSI (I asked to have that confirmed) then I demand (nicely) to know why not, if we had somewhere between 4-6 mil with IVF #2 and 46 mil with IVF #3 if the min threshold was 1 mil. So now I hear, oh yeah, you did get PICSI with both. So I'm both irritated and freaked out about why they don't seem to know exactly what happened.  And I'm starting to have some trust issues with my RE/clinic which is stressing me out as I'm gearing up for IVF #4.

That is so fucked up!!! You're paying these people exhorbiant amounts of money so that they don't mess this up, and to not have a simple answer is just unacceptable!

Was the 1mil pre, or post-wash? We've never had more than half a million post wash total I'm wondering if I should bring this up with the uro?

Twinkie0612

Update: I got the rest of my questions answered. The nurse told me to get my flu shot before I start pred, so I need to get it over the weekend. I have my blood work set up, I am just waiting on them to send the kit. I do have IVIG coverage! They actually have 4 doses at the office for me, that's why my insurance claim was $13,000. Apparently each refill is for 4 doses and I have 12 refills for the next year. That means I could do IVIG weekly if needed! The nurse said I should probably plan on doing an infusion when I am there in November, but I don't think they knew for certain since they haven't received my calendar yet.

lebradford

@Spring78 ((hugs)) That’s a tough call.

@Carol77B Congrats on the improvement in your numbers! It sounds like your lifestyle changes are helping!

@Twinkie0612 Good luck at your calendar review. :-)

((hugs)) @tabbytown I hope your RE can give you some hope.

@AngM123 I feel a lot like that too. Some days I’m so irritated because November is so far away, and other days I am frozen with anxiety and about the emotional roller coaster to come.

Good luck at your consult! @Kcheese

@RunCC37 Good luck at your rheumatologist appointment!! A low carb diet is sad. :-( I hope you can get some good ideas from your nutritionist.

@tptbabe Yay for a great vacation! I hope it was somewhere warm :-)

lebradford

I had my IVF "class" yesterday! We signed all of the consents, they ordered my drugs, and I got the protocol (but not calendar). 

We're doing an antagonist protocol starting with Follistim 200iu. We'll also be using ganirelex, ovidrel, the vivelle-dot patch, crinone, medrol, and some antibiotics. We're doing ICSI and assisted hatching as well. 

I was a little surprised about the medrol (a steroid I guess). I have no idea if this is standard or not?? I'm also a little worried that we're starting out stims too low (I only had one follicle for my 75iu injects IUI cycle). I'm reeeaaally trying to just chill and trust my doctor (but let's be honest, I'd appreciate any calming Bumpie words). 

We still have a few things we need to line up, but it is starting to feel real that we will be cycling soon (November). :-) 

Twinkie0612

lebradford said:

I had my IVF "class" yesterday! We signed all of the consents, they ordered my drugs, and I got the protocol (but not calendar). 

We're doing an antagonist protocol starting with Follistim 200iu. We'll also be using ganirelex, ovidrel, the vivelle-dot patch, crinone, medrol, and some antibiotics. We're doing ICSI and assisted hatching as well. 

I was a little surprised about the medrol (a steroid I guess). I have no idea if this is standard or not?? I'm also a little worried that we're starting out stims too low (I only had one follicle for my 75iu injects IUI cycle). I'm reeeaaally trying to just chill and trust my doctor (but let's be honest, I'd appreciate any calming Bumpie words). 

We still have a few things we need to line up, but it is starting to feel real that we will be cycling soon (November). :-) 

My clinic prescribes steroids for all protocols.  They typically use prednisone for patients with DQ alpha matches and dexathesone fore everyone else.  My RI prescribes prednisone, so this cycle I will be taking prednisone instead of dexamethasone.  I was on a very low dose of dexamethasone for my first 3 IVFs (.75mg, which is approximately equivalent to 5mg of Prednisone).  I'll be starting on 10mg of Prednisone and it will be adjusted if needed after my blood tests. 

Carol77B

tptbabe I'm sorry, but this is the first I've heard about pre/post wash, too! So I have no idea if that has been happening to our sperm or not. Ugh. I am getting tired of thinking I know what is going on and actually knowing nothing!!!

But I hope PICSI is a legitimate option for you, since it was talked up so much for me. The one thing I will add is that at both of my ERs, it wasn't on my file/instructions and I had to make them add it to my file- BOTH times, so I really wouldn't be surprised if it was in fact NOT done. But really, WTF? Since this is all OOP for us, I'm even more testy about the possibility that they have not given us the best chances of success by screwing that part up.

The only good thing to come from this is that I was venting to my husband last night about the did they/didn't they PICSI issue and I think he understands why I am pushing for sperm extraction/aspiration. My point was that if they did do PICSI the last time, it still didn't give us great fert results, so let's try something else and see if that works better! He seemed to be on board with that.

RunCC37

@tptbabe - I'm sorry to hear about the autoimmune stuff I've missed you around here, but I'm glad you were on vacation! 

RunCC37

@lebradford‌ - that protocol sounds perfect to me! 200iu vs. 75iu of Follistim is a big difference. They can always adjust the dose too. As far as the medrol goes, it seems to be standard. Try not to worry about it

@Twinkie0612‌ - I'm still so excited for you! It's so awesome that IVIg is covered

In RunCC news, today is CD1 and my first day with Synthroid and Metformin in my system. I think the menstrual cramps are taking the cake though (Mmm.... Cake....). I'm laying in bed with the heating pad and setting up all my appointments. So much to do!

zeynsom

@Carol77B Your FSH and AMH improvements sound awesome to me! I have also made some changes based on that book and we'll see in a few days in my CD3 bloodwork whether they have made any difference.

@RunCC37 Very exciting that you are starting your cycle. Are you glad that you saw Dr. KK? I feel like I have some answers finally.

@Twinkle0612 Lady, I am jealous! Your IVIG is covered! That is great news. Hopefully they work for you.

Sorry for being AWOL for a long time. September was a crazy month. 

I finally had my followup appointment with Dr. KK based on my blood work. I have elevated NK Assay and Cytokines, and she is concerned about my eggs. We will suppress the immune system and the attack on my ovaries to see whether I have any eggs left in there to proceed. If not, the plan is donor eggs. But it will be a long process. She wants me to do IVIG once in every three weeks for I believe at least three times. In the meantime I will be on prednisone 10mg for three months. Also during each cycle I will take progesterone pills for 10 days following my ovulation to get my natural hormonal levels for progesterone and estrogen in sync. I had my first IVIG in her office following the follow-up appointment. I will have the follow-up blood work this week. Hopefully IVIG helps. Because it is crazy expensive! 

I am also meeting with my new RE (changed REs within the same clinic) on Wednesday. We'll see how open she is to this immunology stuff. At least they have agreed to do my cycle day 3 blood work that Dr. KK wants for three months. In the meantime we'll be BDing, so who knows maybe with prednisone, IVIG, and progestrone a miracle happens :P 

StacyLH24

@princessisadora - Can you please add me?  I am waiting for a consult with my RE before making a plan for IVF #2. 

 

@lebradford - I took Medrol for my fresh cycle.  I didn't have any side effects.  The taste was bad though, so get it down quickly.  I didn't have it for my FET cycle. 

RunCC37

@zeynsom - I am glad that I kept the appointment. I had a lot of doubt in the four months that I waited for the initial consult, but in the end I see that it was worth it to wait. After being unexplained for so long, it's nice to have something concrete to work on. Of course, now I feel completely overwhelmed and like TTC is a full time job!!! Good luck with your IVIg! I have a feeling it will go quickly for you because you'll be actively doing something every few weeks. I hope this helps to jumpstart your ovaries!!

Twinkie0612

@zeynsom Good luck with your IVIG!