This blog post is the tenth in a series about my (and now, my twin sister’s) preventative breast cancer screening journey that began in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic’s Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the fourth post is about my diagnosis with “Stage 0” DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; and the ninth post is about preparing for my twin sister’s chemotherapy appointments at Mayo Clinic, including details about her egg banking procedure. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
This post takes a bit of a detour from what we thought would be our “typical” breast cancer journey. In my last post, my twin sister had just completed installation of her port for chemotherapy and had an “extremely effective” egg retrieval procedure at a fertility clinic in the city.
She ended up with what we thought was a mild case of “Ovarian Hyperstimulation Syndrome” (OHSS) due to the fact she has polycystic ovarian syndrome/PCOS (like I do, too), but in the span of 24 hours, her case escalated from a mild to severe case of OHSS–something that only happens to 1 to 4 percent (or, as her doctor said yesterday, less than 1%) of all egg retrieval or IVF patients. Like I’ve said before, I’ve stopped really caring about statistics and numbers because the fact I–and now, my twin sister–have breast cancer at age 30 defies all statistical comprehension, but being part of less than 1% of the egg banking population that comes down with OHSS is really just INSANE.
One of my friends at church who went through breast cancer 20 years ago told me a few weeks ago that she also stopped listening to numbers and statistics because the bottom line for her is: “This is either God’s plan for my life, or it’s not.” I am here to say the exact same thing, and my sisters are too.
With that in mind, here is what my twin sister’s ovarian hyperstimulation syndrome–including two trips to the hospital in three days–has looked like. For those who don’t want to read all the way to the bottom of this 5,000+ word blog post, here’s the summary: She had an egg retrieval procedure Friday that resulted in 28 eggs going into a freezer (success!), then she started bloating, being short of breath, and became nauseated. She was admitted to the ER downtown Monday, and was admitted to the hospital Wednesday, overnight, into Thursday. She has had 3 aspirations of her abdomen and lungs in 3 days, gained 10 pounds in less than a week, and is supposed to start chemotherapy next week. Her ovaries are currently 4 times their normal size.
Ovarian Hyperstimulation Syndrome (OHSS) begins: Friday
My sister had her egg retrieval procedure Friday. It was a success. They retrieved 33 eggs. 28 of those were mature and went into a freezer! Those will be used in the future, when her husband and she are cleared to start having a family. The eggs will be thawed as part of a traditional IVF procedure.
Even though she was warned that she might be at risk for OHSS due to her PCOS, she was sent home without medication to inhibit OHSS due to the “low risk” of that occurring (1 to 4 percent of all patients have that happen). She was also sent home without any prescription painkillers (like Vicodin). She went home and slept most of the day on Friday, and felt extremely bloated most of the day. She was told she’d experience that, plus some cramping that “should” be alleviated with extra strength Tylenol. She watched movies including Chef and Legally Blonde to pass the time.
Overnight Friday, she woke up every hour and stared at the clock until it was time to take more Tylenol because she was in so much pain from her bloating. She woke up Saturday morning and wasn’t feeling well enough to leave her couch. She still had extreme bloating in her abdomen. She had to cancel a coffee date because she could hardly walk. She was also kind of nauseated and couldn’t catch her breath especially after she walked to the bathroom.
Ovarian Hyperstimulation Syndrome (OHSS) gets worse: Saturday
She laid around feeling miserable all day Saturday (pictured above). By Saturday evening, she was still super bloated and in pain. She had to skip our dad’s birthday dinner at PF Chang’s because she couldn’t stand up straight. She had to stay laying down, propped up, to make it through the pain. We brought her a heating pad which helped a bit. But she still was in a lot of pain.
Finally around 6:30pm Saturday, she sucked up her pride and called her fertility doctor to talk through the symptoms: shortness of breath, extreme bloating, swelling of the abdomen, pelvic pain, headache, slight nausea (but no vomiting), and difficulty sleeping. Essentially, the doctor told her she didn’t think my sister had OHSS–she just thought she was experiencing some severe side effects from the procedure because they’d retrieved so many eggs. 33 eggs is 3 times more than women going in for an egg retrieval procedure get!, as the average woman gets 8 to 12 eggs per retrieval with good response to medication.
Her doctor recommended my sister go in for blood work and an ultrasound the following morning to begin to monitor blood levels and to see if any additional follow-up was needed. She said if symptoms worsened overnight, to call the doctor back and they would evaluate from there. So my sister tried to sleep through the night at home on Saturday in a similar fashion to Friday–treating her pain and symptoms with Tylenol. It didn’t work very well.
Ovarian Hyperstimulation Syndrome (OHSS) gets a lot worse: Sunday
My sister woke up Sunday and decided she was feeling a lot worse than she did Saturday. In addition to being bloated and in pain, she was nauseated and was having trouble breathing. So she and her husband called in substitutes to teach their marriage class at church so they could go into the fertility clinic at 8:30am. They did blood work there and an abdominal ultrasound. The ultrasound revealed that her abdomen and pelvic area were full of fluid. Which explained the bloating and discomfort and shortness of breath. Her weight was also up to 134.5 pounds. Her baseline weight–2 weeks prior–was 128 pounds. So she was up 7 pounds in 2 days’ time, a key symptom of OHSS. Her resting heart rate was between 115 and 120 BPM. She was short of breath. She had severe abdominal and pelvic pain, still being treated with only Tylenol.
The doctor on call Sunday coordinated with the hospital across the street to get her in immediately for an aspiration procedure that would get the fluid out of her abdomen for immediate relief of her “abdominal ascites.” They also prescribed her with a prescription painkiller to help with the pain and the doctor advised she come back to the clinic the next morning to re-evaluate her blood levels.
Conveniently, the hospital across the street from the fertility clinic had availability for an “abdominal paracentesis” procedure immediately. My sister and her husband walked (or, in my sister’s case, waddled) across the street–about .3 miles–and arrived to get set up for the procedure. She got checked into the hospital, and a nurse came to get them at the registration desk. Her husband got to go back and stay and witness the procedure.
A radiologist came into the room and prepped the area to be drained with local anesthetic. The radiologist decided the approach was going to be on the right side of her abdomen, close to her liver. They showed her on an ultrasound her entire abdomen and dark black areas that were fluid that wasn’t supposed to be there. It looked like an “ocean of fluid next to her liver and kidneys,” she told me. “But I got to see my liver and kidneys. That was cool,” she said.
Then they hooked my sister up to a machine that she said looked a lot like a “high-tech futuristic shop-vac.” My sister got to watch the needle go into her side on the ultrasound screen, then the catheter following, and then a clear plastic tube about 1/2 inch in diameter that went from her right side, over her stomach, into the futuristic shop-vac suction machine on the left side of the bed.
The doctor gave my sister a warning and turned the machine on. She said it wasn’t very loud. The fluid that started coming out was pinkish-red in color and the doctor was quick to point out it was standard for OHSS patients to have fluid with a pinkish-red tinge as it’s an irritant in the abdomen which also causes the swelling. This is because my sister’s egg follicles were punctured during the egg retrieval procedure on Friday, and the hyperstimulation also caused her blood vessels to leak into her abdominal cavity.
10 minutes of suction later, a total of 650mL had been drained from her abdominal cavity, which equals roughly a wine bottle. They wheeled her out and sent her home. She got Chipotle on the way home because she was hungry, which was a good sign. But she was still nauseous and was still short of breath. So she took some catnaps and painkillers for the rest of the day.
Ovarian Hyperstimulation Syndrome (OHSS) becomes unbearable: Monday
My sister woke up on Monday ready to go in for more blood work and testing at her fertility clinic. She was still very short of breath and could hardly stand up. Her doctor called and said she was concerned about the “hematocrit” levels in her blood–which were 49.5%–far above standard, which put her at a higher risk for blood clotting. So they called her back in for more blood testing to see if her body was regulating. They also wanted to talk to her about starting some preventative blood thinners. My sister went in, got her pulse taken which was still 115 to 120 BPM, and got some more blood taken. The fertility doctor came in at this point and talked through all of her vital signs. Her pulse was high, her abdomen was severely bloated, and she weighed 135.5 pounds–which was a pound heavier than the day previous and 8 pounds higher than what she’d weighed 3 days earlier.
I went with her to this appointment along with my mom and our baby sister and wasn’t going to leave until my twin sister was all better.
The doctor came in and said that my sister’s case of OHSS was moderate–not severe–and that the situation would resolve on its own. “Your body will absorb this fluid on its own, and I expect you to turn the corner by tomorrow,” she said.
“But my stomach is still bloated, do you want to do an ultrasound to see if there’s fluid still in there after yesterday?” my sister asked.
“No, given the amount of fluid they got yesterday, I don’t think we need to look at that area again today. Also, I would not send you 2 days in a row for parasynthesis,” the doctor said.
“I’ve been coughing when I sit up and it’s really hard to breathe. That is concerning,” my sister said.
The doctor replied, “That is to be expected given your case. Your heart is working extra hard to process this fluid out of your system and to get your body back to normal, so you’re going to be tired and a bit short of breath. This is moderate OHSS, not a severe case. It will resolve.”
But I wasn’t about to let my sister just go home with a blood thinner prescription being in the state she was in. She could hardly sit up or breathe for that matter. So I asked: “Even though she gained 10 pounds in 3 days and weighs 10 pounds more than she has in the past decade and she is super bloated and can’t really breathe, you’re sure she is just a moderate case and she doesn’t need to be admitted to hospital?”
The doctor paused for a moment and said, “This is a moderate case of OHSS. So let’s wait and see what her labs say again today.” She turned to my sister.
“If your sodium and potassium levels are changing, let’s have you stay in the hospital overnight. That’s when I’d admit you and have IV fluids for you every 8 hours for those electrolytes. If you were unable to take in fluids on your own you would need to be admitted to the hospital but you can take in fluids orally better than through an IV so I think you can come back in tomorrow for more blood work and we’ll call you with the results of your lab later this afternoon.”
Echocardiogram finds fluid in her lungs
We left the fertility clinic but I wasn’t totally happy with how that appointment had gone. I was glad that my sister had an echocardiogram scheduled for that afternoon to make sure her heart was healthy to start chemotherapy in two weeks and was curious to know what it would show about the condition of her chest.
Her echocardiogram worked out perfectly because the doctor at the echocardiogram found fluid buildup around her lungs, close to her chest cavity, and some around her heart. That explained why her heart rate was so high–between 115 and 120BPM consistently–because there was fluid nearby putting pressure on her lungs and chest cavity, causing her heart to pump harder to push it away. And that’s why she could hardly breathe–because there was fluid in her lung tissue.
The echocardiogram technician said her heart has been working so hard that it’s like she’s been running consistently for 3 days. The echocardiogram report was sent to her internist who called with the formal results two hours later.
Ovarian Hyperstimulation Syndrome (OHSS) trip to the emergency room: Monday evening
After my sister’s local internal medicine doctor who had ordered the echocardiogram got the results, she called my sister and the first words out of her mouth were:
“What the f*** is going on? I’m sitting here looking at your echocardiogram results and see you have fluid around your right lung and the addendum to your echocardiogram report says your abdomen was aspirated this weekend.”
My sister hadn’t told her internist that she got egg retrieval done last week because last they chatted she was signed up for chemo in a few weeks but after she caught her doctor up on that and told her about her weekend of pain and misery and that she likely had OHSS and a bunch of symptoms, her doctor said:
“I don’t know much about OHSS, but from what I can tell based on your symptoms, this seems like a severe case. You need to get to the ER, and you probably should have been sent there over the weekend. You need a chest x-ray to check out how much fluid we’re dealing with. I’d also love to connect with your fertility doctor as she is available. I know it’s after hours so that could be tough.”
My sister put in a call to her fertility doctor about the echocardiogram results. Her internist had recommended she go to the ER for a chest x-ray. Long story short, the fertility doctor agreed with my sister’s internist and called the ER downtown to let them know my sister would be on the way for a chest x-ray and any other imaging that might be necessary to figure out if her heart was normal and if she had any blood clots.
So my baby sister and I ran over and packed my twin sister an overnight bag in case she needed to stay overnight while my twin sister took a shower and had some dinner. Then her husband took her in to the ER downtown for a chest x-ray and to figure out whether or not she might have a blood clot.
Ovarian Hyperstimulation Syndrome (OHSS) trip to the emergency room: CT scans, X-rays and aspiration
My sister and her husband checked in at the ER. My sister’s fertility doctor had called ahead to let them know she was coming. So she got her vitals right away, a nurse came to see her along with a resident MD to evaluate the situation and to ask what brought her in. She explained her symptoms and the presiding physician said she was extremely concerned about blood clotting in her lungs especially due to the fact my sister has breast cancer she was at a high risk for blood clotting. To test for that they’d need to do a CT scan with iodine-based contrast as well as an abdominal and chest ultrasound to figure out how much fluid was in the abdominal and chest cavities. This would all be followed by a chest x-ray.
The first test was a CT scan which is like a big donut. The technician explained the contrast would make her feel a warm, burning sensation followed by a metallic taste in her mouth, followed by the feeling she had just urinated herself. She put her hands above her head, laid flat on the table, and listened to the machine telling her to “breathe.” “hold.” “breathe out.” She did that 3 times, then the contrast started. At first she didn’t feel anything. But then she felt warm. And tasted metal. And felt a warm sensation like she was wetting her pants. And she actually really had to pee so she actually was worried she’d actually peed in per pants. But she hadn’t. She did say that she was kind of claustrophobic–she was in an open air donut, but she started thinking about how the tube could close in on her and she could become a scene from Final Destination, similar to my experience with my MRI biopsy last month. Haha!
The CT scan ended after 25 minutes and she was wheeled back to her exam room. The doctors got the results in 45 minutes and there were no blood clots, HOORAY! While waiting for the results of the CT scan, they got her in for an ultrasound of the abdomen and chest. They found there was little fluid in the abdomen, but there was lots of fluid in her chest, mostly on her right side. The CT and ultrasound results ruled out blood clots so they said they could move forward with aspiration of the chest cavity immediately on the right side, or they could wait and do the aspiration the next day in a radiology department. My sister opted for immediate relief in the ER so she signed a consent form and they started setting up for the procedure.
The doctor punctured between a few of her ribs to access her chest cavity. She felt it at first and asked for more pain medicine. They put additional pain meds into the IV and completed the procedure, emptying out a total of 400mL of fluid from her right chest cavity. That is approx. 13.5 ounces. She started feeling super drowsy after that procedure. She took a catnap then got taken away for her chest x-ray. This was to make sure they hadn’t punctured her lung or created any air pockets during the chest aspiration procedure.
She stood up for her chest x-ray, had her chest x-rayed, and then sat back down on her stretcher with wheels. As soon as she sat down, she said:
“I’m feeling kind of nauseous.”
The tech grabbed a puke bag and she started puking into it. This was a special bag: It was blue. And there was a plastic ring around it to keep it open. The technician said, “Let’s get you back to your room!” And he started wheeling her back to her room as she was puking. She said she was embarrassed because she was puking as she was getting wheeled back to her room past the ER checkin desk. She got back to her room and was still puking. She threw up six times and then she drank a lot of water and then she took a nap.
As she napped, the doctors monitored her heart rate which was still pretty high. But they felt fine sending her back home about an hour after her last x-ray because her lung wasn’t punctured and there were no air pockets in her lungs and her heart rate had settled at 95 BPM — still high but within a reasonable range. Her husband drove her home and she asked for Taco Bell. Which was a GREAT SIGN!!! She ate a chalupa and went to bed.
Ovarian Hyperstimulation Syndrome (OHSS) recovery (just kidding): Tuesday
My sister slept most of Tuesday and ate lots of food and drank liquids to stay hydrated. We had someone with her 24/7 because we didn’t want her symptoms to flare up again, and her husband just started a brand new job and can’t take any vacation at the moment. So that means us sisters and parents are on caregiver duty most of each day, which means we’re learning a lot about being flexible and caring for loved ones who are under the weather. We thought she would be able to go back to work within the next week–the fertility doctor said it might take a couple of weeks to fully recover but that she should be off pain meds in the next week–and she should be off blood thinners in the next week, too. There was always a chance she could come down with a blood clot or something insane, but we kept praying she would continue to feel better, no more fluid comes back into her abdomen or around her lungs, and that she’s completely healed ASAP!!!!
But then she woke up Wednesday morning and couldn’t breathe again.
Ovarian Hyperstimulation Syndrome (OHSS) sends her back into the hospital: Wednesday
I went to my twin sister’s house Wednesday morning to pick her up to drive downtown for more blood tests to check her levels. I got to her house and her husband told me she was having trouble breathing again. He said that he’d be open to her driving down to be admitted at Mayo Clinic if that’s what it would take for her to be completely healed–at this point, he said, he was done with driving back and forth for aspirations and would prefer she just be admitted to a hospital–preferably, the best hospital in the world (MAYO)–to get this taken care of. But he had to head off to work–he just started a brand new job and can’t take vacation during his orientation–so I got my sister in the car and we headed downtown.
“I’d rather be admitted to a hospital here in the city, where they know my case,” my sister said. “I love Mayo but let’s see what they say here.” (We got word 2 hours later that our doctor at Mayo Clinic would be happy to get my sister admitted in Rochester but we went with the local option instead, for convenience’s sake.)
Long story short, we got to the fertility clinic and the doctor took an ultrasound of my twin sister’s abdomen and chest. There was fluid everywhere–again.
“Are you going to admit her to the hospital?” I asked, trying to mask the panic in my voice.
“Yes. That’s what we’re heading toward,” her doctor replied.
FINALLY! I thought to myself.
Her doctor took some blood samples and called ahead to the hospital to 1) reserve her a room 2) to reserve her another lung aspiration 3) to reserve her an ultrasound of her legs to look for blood clots. We waited for an hour before a room was ready at the hospital. While we were waiting our dad arrived–he wanted to spend time with us. Then we all headed across the street.
They monitored my sister at the hospital overnight Wednesday. At this point, there were 4 doctors involved: My sister’s fertility doctor, internist, the hospital internist, and my sister’s oncologist from Mayo Clinic, who is the one in charge of figuring out whether or not my sister will be ready to undergo her first round of chemotherapy next week.
The internists all decided together that aspirating her lungs would be better the next day because if they waited one more day there was less of a chance of her lung tissue filling with fluid again–with OHSS, symptoms get better over time. but that they wanted to keep her overnight to monitor her vitals.
She got an ultrasound of her legs due to the potential of a blood clot occurring. It turns out that the ultrasound technician that did her exam had HER2+ breast cancer 5 years ago and went through chemotherapy at Mayo Clinic while she was finishing her clinicals at Mayo AT THE SAME TIME (#superwoman)!!! Not only did she do chemo at Mayo, she also had a double mastectomy (which my sister is also planning). She told my sister she would do chemo on Thursdays then go to her clinicals on Fridays, which was inspirational for my sister to hear given she’s a lawyer, loves her job, and plans to continue working through chemotherapy. 🙂 We are thanking God continually for amazing doctors, technicians, and nurses like this that we’ve encountered along this journey!!! It’s been a wild ride but encountering inspirational people and stories like this make it bearable.
Also, the test came back negative–my sister didn’t have any blood clots in her legs!!!!
Of course, we weren’t going to let her spend the night in the hospital alone! So my baby sister and I packed our things and went to spend the night with her in the hospital. My baby sister slept in a recliner and I slept on a yoga mat on the cement floor in a sleeping bag. When I woke up it felt like I’d just endured a UFC cage fight but my sister was so happy we stayed with her so it was definitely worth it.
Nurses came in throughout the night 4-5 times to check her vitals. The next morning, they did the lung tissue aspiration, and got 800CC’s of fluid.
She could breathe much better after that.
She was discharged shortly after the aspiration and she went home to rest. She was very, very, sore from the third aspiration she had in three days, but was thankful to be home where she could shower and rest for real.
Ovarian Hyperstimulation Syndrome (OHSS) recovery 2.0: Friday
Today is Friday. She’s home resting again. We are all praying her lung tissue doesn’t fill with fluid again and her ovaries start to shrink (they’re four times their regular size right now). We want her to be on the mend. It’s terrible to watch loved ones be in so much pain and discomfort. And it’s our hope this makes chemotherapy look like a cakewalk!!!
While she waits, she’s been reading Christine Caine’s Unexpected–about finding God in the unexpected circumstances of life. Here’s an inspiring excerpt that we’re all clinging to:
“So many times, when things get worse before they get better, harder before easier, darker before lighter, we doubt. We doubt God. We doubt His calling. We doubt His faithfulness. We give up. I guess He didn’t open that door. I guess He didn’t call me. I guess this isn’t His will. When did God say that it would be easy? When did He say it would be effortless? Some things that I have learned over and over again is that: Closed doors do not mean that God is not opening a way. Increased cost does not mean that God is not calling. The presence of a battle does not mean the absence of God in the war. Trials don’t mean we are out of the will of God. They often mean we are exactly in the will of God — right where we’re supposed to be, doing exactly what we’re supposed to be doing. Fighting the good fight of faith. Standing. Believing. Because he is working all things together for our good (Romans 8:28).”
The moral of the story here is 1) My sister’s fertility doctor had never seen a case of OHSS this severe and several doctors we’ve talked to since her diagnosis have never treated a patient with it before. That’s how rare it is. And it’s another example of how important it is for patients everywhere to do their research and advocate for themselves always! 2) If you think you need to go to the ER, you should go. 3) It’s important to have an internal medicine doctor you trust nearby. My sister’s internist is the one who pushed for a trip to the ER that flushed 400mL of fluid out from around her lung!!! And: 4) Even when your prayers aren’t answered, life sucks, and you and/or loved ones are hurting, God is still good.
We are learning to believe and trust this truth the hard way.
Until next time: An update about my double mastectomy with direct-to-implant reconstruction that will occur on Tuesday, December 3rd!
This blog post is the tenth in a series about my (and now, my twin sister’s) preventative breast cancer screening journey that began in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic’s Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the fourth post is about my diagnosis with “Stage 0” DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; and the ninth post is about preparing for my twin sister’s chemotherapy appointments at Mayo Clinic, including details about her egg banking procedure.