* Author Topic: PGD for NF1. #1, #2, #3 #4 #5 #6= BFN'; surrogacy #7 = BFP.  (Read 23875 times)

0 Members

Offline Carrie88

  • Gold Member
  • *****
Hello! I debated about starting a blog/video diary to document my feelings and emotions during my first cycle and I didn't do it Because i didn't want to write or say it if it was a bfn. It Sadly was, so I'm glad I decided not to do a blog and im slightly dreading doing one this time in case it's another negative. But I need to do this for my own sanity and wellbeing.

I'll start at the beginning....me: 27 and no issues! Fiance: 29 and with nf 1 which he inherited from his father. He has it very mild and you can't even tell he has it! A frustration for me about nf is it varies in severity and there's no telling how it will turn out. Part of me just wants to have a baby naturally cos my fiancé is fine so I think our baby would be. But I know that's irresponsible really and so in June 2013 I went to my Dr and asked to be referred for pgd. We went to see a genetic team in alder hey, Liverpool who said they'd refer us to guys.

Long wait , plus blood work etc but we were finally ready to start our cycle in April 2015!

I started stims on April 10th and was on 150gonal f and then the cetrotide! I went for a few scans over the 15 days I stimmed, which was expensive travelling down from Liverpool all the time. I had about 22 follies. I thought great, lots of follies and young age = good egg collection!!

It was a disappointing egg collection for me. They got 8 eggs out of me. I was devastated, I wanted at least double that. Nf was 50:50 so I needed all the eggs I could get. They assured me it was quality and not quantity and said they'd call us with the fertilisation results. Egg collection was at 830am and I was out by about 10-1030am. We didn't know how I'd feel after it so we booked a late train home so ended up walking around London all day. When we were at Euston at about 630pm I felt really poorly and ended up throwing up and with bad diarrhoea on the train home. It was horrendous, I don't know how I did it. I was crying cos every time I was sick my stomach hurt from egg collection! Made it to Chester and threw up on the platform cos the toilets were shut! I was feeling really faint so my FIL had to come pick us up, when we got home it continued so I rang the emergency number who said it was unlikely to be ohss but if it continued I'd need to go to hospital the next day to get put on a drip. I went to bed that night and woke up the next day unwell but could keep water down! We got the call that morning; all egg were mature and fertilised! We were made up!!

More waiting....6 made it to biopsy....this was a rubbish bit, waiting to see how many were affected...5 came back with nf and 1 didn't. Tried to stay positive with the whole you only need one etc but I knew it was unlikely to work.

ET - they said it defrosted perfectly, was a 5BC so not bad and it went well, back on my way home!

2ww - I ate pretty healthy. I had booked the two week wait off work. I did acupuncture, ate Brazil nuts etc. I didn't eat the pineapple core though, that sounded  weird. On day 3 of the 2ww I went to reiki and after this I got home and had bad diarrhoea and wiped and the tissue was full of blood, bright red blood. Rang guys and they said it could be a tear from the diarrhoea but I'm pretty sure it wasn't. I tested early on 8dp5dt and it was negative. I knew ,most people had positives at this point so I had prepared myself that it had failed, and lo and behold on our OTD it was a negative. Gutted was an understatement. I guess I thought cos of my age it was likely to work. I've read of woman 10 years older who had success so it was hard to not feel angry and jealous.

We had s follow up app in person cos I wanted to see them and not just speak over the phone. They said they were expecting 15 eggs out of me with that many follies, but my eggs were good quality. So for the next cycle they're keeping my Gonal f the same. They've asked me to chill out a bit, if I want a brew then have one, if I want 1 small glass of wine then have 1. They said we were unlucky having 5 affected and they're positive it's gonna work for us so to keep trying. We want to have our scans up north next time and are hopefully starting the second cycle in September! I am just waiting on AF so I can take the pill and then ring them.

So how am I feeling? Sad we have to go through it again because it's such s long drawn out process and full of hurdles. Angry at myself that  it didn't work for us when it has for older ladies and for those with the same quality embryos so I must have done something wrong. Struggling when other friends announce they're pregnant and you're happy for them but jealous it's not you :(

But slightly positive reading success stories on here cos I think we were just unlucky and there's a reason the nhs gives you 3 goes I guess!! Hopefully people will read this blog but if not it's a cathartic thing for me :) will update once I've got the start dates of cycle #2!

FertilityFriends

  • Advertisement
  • ***

    Offline Carrie88

    • Gold Member
    • *****
    Haha just as I finished typing this and went to bed, I went the toilet and red blood on the tissue and cramps so looks like AF has arrived. I'll take my pill in the morning and call guys on Monday to let them know!


    Offline Carrie88

    • Gold Member
    • *****
    I rang guys this morning and they're going to ring me back tomorrow to discuss having my scans up at Leeds instead of London! It won't save me time but it will save me a lot of money!

    Having a bit of a down day today, struggling with trying to find the strength to do a second cycle, seeing people's social media posts and people with their babies in the street is making me feel so sad cos I can't see us being successful in this. I hate the nf gene at the moment!!!

    But I have decided on my first tattoo idea! I've wanted a tattoo ever since I was a teenager but couldn't decide what to get as I wanted something meaninful!! I'm going to get 'never lose hope' either on my hip or in small writing across my stomach!! I'll wait till after out treatment but I am definitely going to get it!

    Offline Carrie88

    • Gold Member
    • *****
    Guys called today, they've booked me in to start cycle 2 on Friday 9th October (start stims). They are going to contact Leeds this week and see if they can accommodate us, if they can't it will be London! I hope I can have the scans in Leeds, my grandma lives there and said she would take me!

    Offline Carrie88

    • Gold Member
    • *****
    Wow Ive not updated this diary in over a month so let's go!

    Had a call from guys 3 weeks ago who said that Leeds had been in touch and said they were going to charge us £1085 for scans. I asked why as I know people are having their scans there for free and guys said cos Leeds must be there main clinic and Liverpool women's referred you direct to us. Naff nhs rules!! So I wasn't saving any money if I had the scans at Leeds but I didn't want to travel from Liverpool to London every time either!!! Guys could refer us upto Leeds so Leeds would be our main clinic but that was likely to delay cycle 2, which I also didn't want.

    So all our options were crap. Negatives to all of them. After a lot of crying I decided to travel up and down to London again. But I've not been in a good place regarding cycle 2. Two weeks ago I wanted to give up and just adopt but my fiancé persuaded me to carry on seem as we have two more cycles on the nhs.

    You try and stay positive and cling onto hope for the success stories second time round. But when you can't see yourself being a success story you just lose all motivation.

    I went to London last Friday for my base scan. 22 follicles on my left side and 20 on my right. The nurse said oh you'll hopefully produce lots of eggs. I said I doubt it, look at my eggs collected from cycle 1. And she did and looked really taken aback and was just like 'oh'

    So I start stims this Friday...my gonal f is chilling in the fridge ready. I hope in 3 months time I can be posting happy news but it will more than likely be negative news.

    First trip to London is next Tuesday for a blood test. They're definitely monitoring my levels this cycle which is good and I personally think my gonal f will get increased but I totally understand they don't wanna do it straight away in case I over stimulate.

    So yeah that's all there is to say really. Feeling very down and pessimistic, maybe I'll feel better once I start. Hopefully I will.

    Offline Carrie88

    • Gold Member
    • *****
    Not updated this for a while but I am on day 7 of stims and I have my first scan tomorrow.

    I had my day 5 blood test on Tuesday. I finished work at 5pm on Monday, rushed home, made tea and packed and got dropped off at Liverpool like street at 6.20pm. I got into London at 9pm and I was staying with a friend at Colliers Wood so got the tube there and then walked to her house, arrived about 945 and went straight to bed.

    Got to guys on Tuesday morning and seen dead on time for my blood test, they were testing fsh levels, estrogen and lh levels. Got a call in the afternoon just as I rolled up home to say my levels are fine and they want me to keep my gonal f the same (very surprised there).

    So my scan is tomorrow at 12.30 and I am getting the 930am train from Chester!!

    I am quite bloated, my work trousers were digging in bad today (probably doesn't help I'm fatter at the start of this cycle). I'm drinking 2L of water a day, my Brazil nuts, eggs, milk etc.

    I'm still a lot more relaxed though, I'm having 1 brew a day and hot baths during stims, which I refused to do last time!

    In terms of dealing with my friends pregnancies, some days I'm fine and some days I'm not. I think it's gonna be like that until I'm pregnant.

    Offline Carrie88

    • Gold Member
    • *****
    Good evening!!

    So yesterday was my first stim scan and it did not go smoothly. I got to guys at 12.20pm and my app was at 12.30. The girl on reception said there was an hour delay and if I wanted to go out and get a coffee and then come back I could. I said my train leaves London Euston at 2.10pm so I needed to leave here by 1.30pm. The girl put a note on the system that I had to leave by then and said if you've not been seen by 1.15 to come back.

    I don't know why guys were running an hour behind! I do account for them running late when I book my tickets home but an hour? That's pretty bad.

    Got to 1.20pm and I'd not been seen so I went to reception and the girl was lovely and went to try find a nurse but they were all scanning people!!

    I was getting very anxious as if I missed this train I'd have to pay £150 for a new ticket. I was getting all upset and texting my fiance, telling him I'd have to leave. I got called in at 1.40pm and the nurse was lovely, proper apologetic but I wasn't really in a talkative mood. I have 40 follicles overalls and she measured 5 of them cos she knew she had no time.

    I got dressed and didn't even make a new appointment, she said she'd call me later to arrange that and then I just legged it out of there! Ran to the tube and got there at 1.50pm and got on a train. I got to Euston at 2.07pm and I ran up 3 escalators and all the way to my platform with 1 minute to spare!! I got on the train st 2.09pm, the woman I was sitting next too asked if I was ok Cos I was gasping for breath.

    My chest hurt and I felt sick cos I'd not even eaten lunch!!

    Guys called me later and said I am at the exact same point as I was last cycle so I don't need to come down Monday, I can come down Wednesday for scan 2! Booked in for 930 so I'm gonna go down Tuesday after work and stay at my friends. Egg collection will either be Friday or a week on Monday!

    Starting to feel very uncomfortable and bloated but apart from this I've got no other side effects.

    Offline Carrie88

    • Gold Member
    • *****
    So I had another scan yesterday. I travelled down Tuesday night and stayed with a friend  ready for my app on Wednesday. I started to feel unwell Tuesday afternoon, muscle pains and feeling sick. Felt worse on Wednesday but powered through.

    I saw someone on Wednesday who could scan but couldn't advise as she wasn't a nurse so after she scanned me I had to go back to the waiting room. I got called in by a nurse who said they'd had to speak to the pgd consultant and he wanted me to have a blood test now as I wasn't where I was last cycle. Had my blood test and then travelled back to Euston.

    I deteriorated on the train home and got back at 3pm and went straight to bed. I had a missed call from guys and a voicemail to say my bloods are fine so to stick to the same gonal f dose. I called them back to confirm I'd received it and told them I felt like I had flu and was it safe to take paracetamol and they said yes. I said would it affect egg quality and they said no. I took two paracetamol, had some toast for tea, I'd barely drank any water all day but my throat just hurt too much to drink.

    I went to bed about 9pm as I felt rotten, my temp was 38 so a bit high, and I was awake a few times in the night sweating and in pain. I woke up at 730 to take my cetrotide as my alarm went off and paracetamol and then went back to bed, I woke up then at 11.30am and chilled in bed and then got up.

    I'm laid on the sofa in my dressing gown wondering if I've messed up this cycle. I've not drunk much water, I've barely eaten, haven't had my Brazil nuts or eggs :/ I guess only time will tell.

    Back in London tomorrow so hoping I'm better by then!

    Offline Carrie88

    • Gold Member
    • *****
    My Friday scan did not personally go well for me. They were running an hour behind again and  I find guys extremely lacking on their communication. They want me to keep on stimming (I am on day 17 now and still on 150 gonal f). They didn't say much, just said come back Monday for a scan and blood test.

    I'm frustrated and I'm tired. I have travelled down 5x in 2 weeks and balanced work as well. I had to ask for my blood test results and what they meant, they didn't tell me. They haven't told me why they're not increasing my dose or why I'm not ready yet when I triggered at day 15 last cycle. It's all incredibly frustrating and upsetting for me.

    Cycle 2 is doomed and I've not even got to egg collection. I'm 27 and stimming for 18 days. That just doesn't seem right to me.

    I'm still not feeling 100%, although loads better and so that probably isn't helping my mood. I'm catching an early train tomorrow from Chester and getting an afternoon train back. Hopefully they're not running behind an hour again. Fingers crossed tomorrow they'll say yes to egg collection!!

    Offline Carrie88

    • Gold Member
    • *****
    I'm ready for egg collection!!!

    My ovaries are so enlarged they're touching each other and my uterus had disappeared! One of my follicles is 27mm so I hope my eggs aren't overriped!!

    I triggered at 8.30pm tonight and EC is 8.30am on Wednesday!! I'm working tomorrow 9-5 and then we are getting the train down tomorrow evening.

    I have over 40 follicles so I'm hoping for more than 8 eggs this time!