Sorry for not updating. It has been an extremely traumatic week for me.
As we feared, I ended up suffering from what the doctor called “moderate to severe” OHSS. I am still on leave and recovering at home. It will probably be at least another week until I can go back to work. I am only just now able to walk again, though I still struggle getting up and down the staircase at home.
OHSS is scary. Really scary. It means constantly feeling like you are gasping for air because of the fluid pushing against your lungs, it is indescribable pain that inhibits the simplest of movement, it is the inability to sleep lying down for fear you will silently suffocate and never wake up, and it is incredible bloating. I have put on 8kg of fluid in a week and it honestly looks like I am about 6 months pregnant. None of my clothing fits me.
Stupidly, the doctor told me I was fine to go back to work last week. I went back on the Wednesday armed with a heating pad and strong painkillers. I made it to lunch time before I was throwing up from pain and unable to walk. I phoned the nurses at the clinic who panicked and told me to get myself to the emergency room at the hospital as soon as possible because I needed to be admitted. I phoned Doug, who works across town, and he jumped in the car immediately and drove to pick me up.
While I was waiting for him to arrive I tried to phone my doctor to inform him I was coming to the hospital, but he was in surgery. I was transferred through to the on-call doctor in the maternity ward and delivery suite. When I told her my symptoms, her response was a very stern “come now darling, come now!”
By the time Doug arrived to collect me I could hardly move to get to the car. I could see the worried look on my colleagues faces as I left, and I knew they didn’t expect me back anytime soon. We raced up to the hospital, where we were intercepted by my doctor. He had finished surgery and had a break before his next surgery would begin.
He performed an internal ultrasound (yay! good to see those are still part of the process even after the eggs are picked up!) and it was shocking to actually see the amount of fluid sitting inside my body. It was like my organs were drowning in a sea of black liquid.
“Yes hmmmmm,” he said, staring at the monitor. “No wonder you are sick!”
“She needs to be admitted.” Doug said. “She’s so ill.”
“No no no,” the doctor shook his head. “We will treat Sadie as an out patient.”
“What!” Doug said angrily. “You have to be joking!”
“Trust me!” the doctor argued. “This is the best way to get her well. She needs to be in her own bed recovering. She will come up to the hospital once a day and I will scan her and make sure she is ok.”
The biggest mistake we made was once again trusting the doctor’s judgement. What I really badly needed was to have been admitted to hospital where I could have received the care I needed. What I really badly did not need was the agony of an 80 minute round trip to the hospital every day, where every bump in the road felt like I was being stabbed. And then of course there was the added problem that Doug had to go to work and I clearly couldn’t drive. My poor mother had to drive me every day and wait on me and take care of me.
My doctor also changed my IVF cycle to what they call a “freeze all”. As the name suggests, any viable embryos are frozen and no embryos are transferred until the patient is well. That was a hard blow to my already fragile emotional state. I lay in bed, unable to move, in constant pain and crying about the fact I wasn’t even going to be able to have my transfer. I knew it was absolutely the right decision to make, given the circumstances, but that didn’t make it any easier to accept.
“Don’t worry!” the doctor assured me. “You have 11 embryos and because you’re young I’m confident your embryos will be good quality, and most if not all will end up being frozen. You will have many chances to get pregnant!”
The doctor estimated there was a 60% chance we would end up completing our family (which we would ideally like to include three children) just from this one frozen batch of embryos. Doug was extremely pleased with those odds, to say the least.
I received a phone call during the week to inform me on day 3 post egg collection that we had 7 embryos remaining. The others had been too slow to develop and “dropped off”. By day 5 (the day they are normally frozen), 4 embies remained but only one had made it to blastocyst stage and it wasn’t a good quality blast. The embryologist wanted to wait 24 more hours to see if any of the others came good. All embryos need to be frozen or transferred by day 6 (they can freeze them on day 7 at the absolute latest but only do that when absolutely necessary as the quality is lessened).
As day 6 fell on a Saturday the embryologist promised someone would still call me to tell me the results, but as the clinic was technically shut (embryologists work 7 days a week but the rest of the clinic doesn’t) I wouldn’t be able to call them. It was a one-way communication system.
After another sleepless night (thanks to both OHSS and a severe amount of worry) I spent the entire day on Saturday with the phone in my hand. I kid you not I checked that phone every 2 minutes.
Have they called yet? No. Have they called yet? No. Called yet? No. Called yet? No. Called yet? No. Called yet? No.
I’m sure if I’d been able to walk very far I would have paced the length of the house until I wore through my slippers. I nearly drove Doug completely insane.
At 4.30pm Doug finally dragged me out of bed to help me have a shower, stressing that if they were going to call they would have already done so. When I came back to bed at 4.55pm guess what? I had a missed call from the embryologist! I phoned back straight away, but of course I only got the “sorry this clinic is closed” voice mail as they told me I would. I was distraught that I would have to wait another night not knowing if any of my embryos had survived. I was an emotional wreck.
Yesterday morning (Sunday) I woke up and tried phoning again, even though I knew I wasn’t going to get through. I couldn’t even believe I was having to endure an entire weekend of this mental turmoil, on top of the physical nightmare that is OHSS.
Finally in the afternoon a call came through.
“Hi Sadie,” started the cheery embryologist, clearly unaware of the nightmare I’d been living for the past two days. “We just thought you’d like to know we were able to freeze one of your embryos yesterday.”
The first thought that popped into my head was oh thank you thank you thank you they got one. My second thought was holy shit I had 34 eggs picked up and only one made it through to freeze. What the hell happened?
The embryologist explained that my embryos had all suffered from late onset fragmentation. Here’s a link to a site that explains fragmentation pretty nicely: http://www.inviafertility.com/blog/uncategorized/david-hazlett/embryo-fragmentation-what-does-it-mean-3
Essentially, a small amount of fragmentation is to be expected, but any embryo with more than 50% fragmentation is too weak to survive a freeze and subsequent thaw. In order to determine whether an embryo is right to be frozen or transferred, they’re given grades. These grades differ from country to country. My clinic grades embryos based on the following criteria:
- lastocyst development stage – expansion and hatching status
- inner cell mass quality (whether the cells are tightly or loosely packed)
- trophectoderm quality (whether the cells form a cohensive layer)
I had four embryos make it through to blastocyst stage. They were graded AA hatched (woohoo a perfect hatched embryo!), CC, CC and CD. Anything less than BB is considered unviable for freezing, though in some cases doctors will still transfer them to a patient if they’re fresh. My CC and CD embies had come to the end of the road. Life was cruel.
When I asked the embryologist exactly why all of my embryos had fragmented so badly, she said it was because I had too many collected. The words were so powerful they virtually echoed through my ears.
Too. Many. Collected.
“Really that many eggs should never have been picked up.” she said. “You’re never really going to get good quality embryos when the eggs haven’t been given enough space to develop in your ovaries.”
It was the doctor’s fault.
He was the one who had told me it was ok to go ahead with the stimming, even though we thought we might need to cancel the cycle. He was the one who had the power to stop the egg pick-up if he thought I had too many eggs. Not only was I suffering from OHSS because of his poor decision, all but one of my embryos were now dead. And to make matters worse he was forcing me to come up to the hospital every day for treatment because he simply refused to admit me! I remembered the way the clinic nurse had reacted weeks before when I’d confessed I was concerned about his level of care. We had trusted him and he had led us astray. Clearly we are not the first patients who have felt this way about him.
I went back to see him this morning for my check-up, purely because at this stage there’s no other fertility specialist who can treat me and I want to know when I can go back to work.
“How did you feel after your egg pick-up Sadie?” he asked, reviewing my file.
“Um what do you mean?” I asked, screwing up my face in confusion.
“Well were you sore after pick-up? Did you get cramps?”
“Um I have OHSS…..” I frowned. “That’s why I am here? You are treating me as an outpatient for OHSS.”
“Ohhhh yes that’s right so I am!” he laughed, like it was some kind of joke.
He had forgotten.
And then he gave me a prescription for a medication I am allergic to. An allergy which is clearly printed in red pen on the front of my medical file.
I want to cry! I don’t know what we are going to do! But I am also trying to stay positive.
We have this one perfect little embryo who has managed to survive against the odds. AA graded! When all their brothers and sisters perished, this embryo fought hard and made it all the way. It was almost like natural selection. This embryo was meant to be our child. We have nicknamed it Nemo, because it is our “one egg” haha.
It looks like at the moment we will need to go through our current doctor to undergo a frozen cycle with our little Nemo, and then hopefully we will become pregnant (touch wood). We can then look to find a new doctor when we go back for our second.
For now I just have to rest and recover. Then, once I get my period (probably in about a week) we will be able to start the cycle for the frozen embryo transfer (FET).
I guess I am in shock at how crazy this whole process has been. Surely doctors have the ability to make it more seamless, or at least less stressful for patients? Or maybe this is just how fertility treatment is for everyone.
I will update again when my FET cycle begins.