Monday, April 22, 2024
Day 11 Fertility – Ultrasound #4
I started my day visiting Dr. Park, my OBGYN. We looked at all the follicles again through a transvaginal ultrasound and it looks like I definitely have 8 follicles on the right side that can be taken and 3 on the left side. If I’m lucky, I might get double digit eggos, but this might not necessarily translate into mature eggs that can be frozen. My follicles are all pretty much a good size now (14-25 mm) so we’ve made a plan to do my egg retrieval on Thursday morning.
After my appointment, I had to get my IVIG transfusion. IVIG stands for intravenous immunoglobulins. In a normal person, your B cells make immunoglobulins to help fight off infections. In my body, I don’t have many B cells and those B cells barely make any immunoglobulins (and if they do, we’re not sure how functional). Because of this, immunoglobulins are pooled from thousands and thousands of blood donors, processed, and infused into me. Unfortunately, their shelf life in a body is about 3 weeks to a month, so it’s something that I have to replenish regularly.
I started my first IVIG infusion when I was 13 and have been doing it every month or so for the last 23 years. In high school, that meant taking a Friday off every month to go to the infusion clinic for a day long 5 hour infusion. I’m usually pre-medicated with Benadryl and Tylenol so I get to sleep for a few hours, but it makes me feel groggy, sometimes I get a headache, and I’m pretty much pooped for the rest of the day. Nowadays, I have a wonderful home infusion nurse (shout out to Jenni) who comes to my house, starts my IV and meds, and then I get to stay at home and cuddle with Maple while I infuse. Also, shout out to Gordon who does my IVIG ALL the time when he’s with me.
In any case, I had IVIG at the hospital today which means sitting around with an IV in my arm for 5 hours.
Today will be my last day of Menopur and Follistim injections!
Tuesday, April 23, 2024
Day 12 Fertility
I did my ganirelix injection in the morning, and the big thing of today was doing my trigger shot of human choriochorionic gonadotropin (hcg) at 9:30 pm tonight. Once the trigger shot is done, retrieval is done 36 hours after.
Wednesday, April 24, 2024
Day 13 Fertility
No shots today (woot woot) but I did have to get labs in the morning to track my estrogen progesterone levels. I’m NPO after midnight so no more food or drink.
Thursday, April 25, 2024
Day 14 Fertility – retrieval day!
Egg retrieval is done at Walter Reed hospital, which is across the street from the NIH (Walter Reed is the place that the orange guy got treated a while ago I think). We had a taxi come get us at 6 am this morning and I checked into the assisted reproductive clinic (ARC) at 7am. There were 2 other gals who were doing retrieval, with one girl also getting a transplant. She’s much younger than me though (born sometime in the 2000s).
I met with Dr. Li, the fertility fellow that works closely with my OBGYN Dr. Park at the NIH. Dr. Li has been coordinating everything, and I mean everything (paperwork, clearance, taxis), on the Walter Reed side. He’s been so wonderful as I’m sure patient clearances are the last thing a fellow wants to do!
They had a hard time starting my IV (I have small veins and I was dehydrated from not eating/drinking since last night) and then they rolled me into the OR around 9am. The procedure itself is relatively quick (30 minutes) but all the prep before and after is what takes the longest. In terms of the actual procedure, I have no memory of it because they sedated me. They did say that it’s similar to a transvaginal ultrasound but there’s also a needle at the tip of the wand this time to poke your ovaries where the eggs are.
I woke up in the PACU with some pelvic pain like menstrual cramping (2/10 pain) mostly on the right side (assuming because I had more follicles on that side). The nurse did give me some fentanyl (I don’t really remember this) and I assume I fell back asleep.
After coming to my senses, I got to go home. I was able to walk out of clinic and grab a cab from Walter Reed back to the NIH. I did have some nausea from the car ride back, but it was a bit of a bumpy ride.
We got home around noon and I ate a few crackers before wanting to go lie down. This is when I started to feel TERRIBLE, and by that I mean sweating at my hands and feet but also feeling chilly when I didn’t have blankets. Pain on my pelvis, but also some stabbing feeling on my tailbone radiating towards my pelvis. I couldn’t get comfortable on my back or in fetal position or on my side. I ended up taking a Percocet (an opioid) at 3pm and was able to fall asleep but man was it rough for the rest of the day.
But as I was sleeping, the fire alarm went off. As my dad is helping me walk down the stairs, he’s mumbling “It was probably your mom. It was your mom. It has to be your mom.” Sure enough, mom set off the fire alarm. Luckily, she had just spilled oil on the stove top which created a big puff of smoke that set off the alarm.
Friday, April 26 2024
Fertility Post Op Day 1
I had a follow up appointment with Dr. Park this morning because of how much discomfort I was feeling yesterday. The main concern we have with these types of procedures is internal bleeding. Some fluid buildup is normal but we did an ultrasound to make sure there wasn’t anything that might have been missed.
I also got to hear about the final count. While I did have 11 follicles, they only retrieved 6 eggs. If I’m honest with myself, I’m a little disappointed. I always knew there would be some loss (like 80%) in terms of follicles to # eggs retrieved but I thought it would be around 80% loss so I’d have maybe 8-9 eggs. In terms of what happened to those other 5 follicles, there’s a whole host of reasons – it could be that there was no egg, the egg wasn’t mature, the egg was too mature. The other component is that in chronically ill patients, the number of mature eggs seems to be lower as compared to a healthy individual.
The good news, though, is that all 6 eggs that were retrieved were mature so those will be frozen.
I can’t help but think that there will be around 80% loss when they’re unfrozen but also, I have to remind myself that it’s entirely unhelpful to even think about all the scenarios that can happen at this point. All these percentages that science papers write about are just that, percentages. They won’t dictate an individual person’s outcome, and I’m certainly an anomaly when it comes to anything science.
Overall, I’m having a lot of feels today. A bit of disappointment for the number of eggs that I got. A bit of grief that I even have to do this or that women even have to think about these things. A lot of feelings of helplessness that even when you do all the right things in life, you still can’t control some outcomes. It’s also compounded by all the ridiculousness surrounding the overturning of Roe v. Wade, the Supreme Court arguing over EMTALA as it relates to emergency abortion, and how many organs are okay for women to lose before providing life saving healthcare. Is it even worth it to have children at a time like this? All this time I have to let all these thoughts marinate in my head. However, I will say, there is also some relief that this is over with and that I can move on to what I’m actually here for which is a transplant.
The weekend is coming and we don’t have any plans, but Gordon arrives tomorrow fairly late so we’ll probably see him on Sunday! Next week starts my pre-transplant workup so lots of appointments and labs and tests.