By the time they discharged us, it was already Shabbos, but I so badly wanted to be home with my babies. Before I left, the doctor gave me the go-ahead to walk back that night. So, a little over a week after my C-section, my husband and I walked the hour back home. Boy, did I feel like a wreck.

On Sunday morning, I went to my regular general practitioner, who diagnosed me with an infection and had me repeat the blood work. Meanwhile my mother came from the States to help me out. I was excited to see her, but felt so sick! On Wednesday, I went back to the doctor because my throat felt like it had been on fire for days. The doctor took one look at my blood work results and paled. “You are really sick,” he told me. “You need to go straight to the ER.”

The hospital, again?! I had just escaped from there on Friday night! This time, my doctor urged me to go to Hadassah Ein Kerem, where they had more experience with abnormal white blood counts.

SO back to the ER we went. My toddler was so sad when we left, overwhelmed by the ordeal, and I was heartbroken for her. But that ER stay was short. The doctors didn’t know why my white blood cell count had been so low; right then in the ER, the results were within normal range. They told me that I had tonsilitis. I got medicine and was instructed to repeat the blood tests in a few days.  Phew! We were out of there again.

We had planned to make a kiddush for the baby while my mother was in Israel. But she was concerned about my health. She didn’t want to make a kiddush when I clearly wasn’t feeling well. But I was done with doctors and tests and the revolving door at the ER. I just wanted to go ahead with the kiddush on Shabbos morning.

Then came Friday night. I felt an acute pain in my back. When I touched the spot that hurt, I recognized what was happening: I had another infection coming on. It would have to be treated. But not then! I had a kiddush to make!

I was in such agony all Shabbos that we headed to the nearest Terem (urgent care) right after Shabbos.  I didn’t think I needed a whole hospital for just an infection, even if it was my second one of the week. Neither did the Terem staff. They told me that I’d caught this one in the early stages and it wouldn’t be an issue.

Ha! A few days later, the pain had only gotten worse. We went back to Terem, but they told us that this was beyond their scope. We’d have to go to the ER. Heading back to the hospital was like experiencing a nightmare that kept replaying over and over again.

This time, my white blood cell count number was at zero. Nothing. There are several types of white blood cells. The ones I was missing were called neutrophils, and they are responsible for fighting infection. The average neutrophil count for an adult is between 2,500 and 7,000 neutrophils per microliter of blood. Without any neutrophils, I was at extreme risk of infection. The doctors refused to let me leave, insisting that I needed special injections to build my neutrophil counts. I would have to be admitted to the hospital, but I hadn’t been prepared for that. My newborn was with me, but my toddler was at a neighbor, and I just wanted to deal with this crazy infection and go home. “Please,” I begged, “can’t you let me go home?”

The answer was no. The hospital insisted that I get an initial injection in the ER, and subsequent injections in the hospital ward. But somewhere along the way, their lines got crossed. The ER never gave me the injection, and the ward nurses were sure it had been done in the ER. The hospital was short-staffed because of the war, and I didn’t register as an emergency in their protocol. I had to wait a while to see an attending doctor and explain that I hadn’t received any treatment yet. He was frustrated at the lack of coordination between the ER and the general medicine ward. “You need to be proactive at getting those injections,” he told me. “It’s the whole reason that you’re here.”

But that was easier said than done. The general medicine ward was staffed mostly by male nurses who weren’t open to my nudging. Plus, I was on five different kinds of antibiotics to protect me from all the infections that might find my vulnerable body. By the end of it, I felt like I was in a worse state than I had been when I entered the hospital.

And after a full week of injections, my blood count was still zero. The injections hadn’t helped at all. Now, I was getting nervous. But the hospital decided that it was time for me to go home. They said it was clear that the injections weren’t helping. I was at risk of infection by being in the hospital, so I should go home and make sure I wasn’t exposed to anything. That meant that my toddler, who went to gan with all those kiddie germs, couldn’t be home with me. I needed to follow up with blood work and take my temperature three times a day. Any sign of fever would warrant an immediate return to the ER. To keep me safe, my husband would have to wear a mask whenever he was in the house. What kind of life would this be? And how would I escape it? I missed my toddler so much.

Before I left, my infection had gotten so bad that the doctors agreed to treat it even without my immune system in place. A doctor came to drain the infection. He told me it wouldn’t hurt, but I was shrieking in pain the whole time, and by the time he finished, my entire robe was covered with blood. He was nonplussed. As he bandaged the site, he told me, “You can either forgive me or kill me.”

I was not going to think of the ramifications of that one.

Before I left the hospital, I was visited by my father’s cousin and his wife. His wife had experienced similar symptoms 28 years before, and she insisted that I couldn’t be discharged until I had a bone marrow scan. I think the hospital thought she was my mother, but actually, since she was a longtime Israeli, she was even more assertive than my parents would have been.

Thankfully, I was unconscious for the bone marrow scan — I couldn’t deal with any more pain. At first, we were told that the results would be available within a day. The initial results did come through in a day, but the final results would take a week or longer. So we went home without knowing anything.

We didn’t have any facts yet. But believe me, my imagination was already in crisis mode. I pictured my husband alone with two young kids, convinced I didn’t have much more time.

A week after I got home, I came down with a raging fever. Was it back to the ER again?

My neighbor down the block was a doctor and a huge tzaddik. After I was discharged last time, he told me that if I ever needed to return, I should contact him. He would have me admitted to the hematology ward and contact top doctors there for me, because it was obvious that they didn’t know what to do with me in general medicine.

He kept his word, and I was admitted to the hematology ward. What a different world this was from general medicine! Here, the nurses were mostly religious women who were so kind. They were thrilled that I had my baby with me — I was nursing full- time — and vied for the privilege of helping me take care of her. “We love babies,” gushed one nurse. “We don’t get to see enough of them on our floor.”

Soon after my admission, the head of the ward came to see me. She listened to my retelling of the saga and then said to me, “I want you to know that there are some very sick people in this ward. But you are not one of them. You are not sick. Stay in your room so you don’t catch any infections. We’re going to get you well and get you home.”

She decided to start the injections again. “They might not have worked last time, but that doesn’t mean that you won’t respond to them now.” A few days into the injections, I felt so heavy and achy that I could barely stand. But the doctor was thrilled. “That’s a sign that it’s all about to kick in,” she said. “Right before the white blood cells start to regenerate, they cause a reaction like this heaviness.”

She knew her stuff. Sure enough, a few days later, my white blood count had soared from zero to way above average! At last, I was actually better, and I could finally go home for good.

But what had happened to me? What had gone so wrong?

While nothing could be conclusively proven, not six weeks after birth, the hematologist strongly felt that this whole ordeal was a reaction to the Optalgin I was given after the C-section. Optalgin is a popular over-the-counter painkiller in Israel, stronger than Tylenol and Advil. It’s pretty standard procedure that after surgery, a patient is given Optalgin, either in their original IV drip post-surgery or in the ward for pain management.

But while Optalgin is common in Israel, most Americans have never taken it — the drug isn’t FDA approved. And one of the main reasons why is because of a rare, potentially fatal side effect called agranulocytosis, in which the body’s neutrophils are destroyed by Optalgin.

When I had my first C-section in Bikur Cholim, they might not have given me Optalgin. In Hadassah, it was a standard, and nearly certain that I’d received it. The average doctor might not have made the connection between my C-section over a month before that and my blood work after, but this head hematologist said that all of the cases of agranulocytosis that she’d seen had occurred to foreign citizens who had never taken Optalgin before.

By the time I got home, my baby was six weeks old. I hadn’t seen my toddler in weeks. My neighbors were exceptional, watching her throughout my ordeal, and I had so much hakaras hatov for the nonstop, incredible chasadim that were bestowed upon me and my family. Mi k’amcha Yisrael!

It was exhilarating to know that I was out of danger, but it was also draining and terrifying to understand that this whole ordeal could have been avoided. If I had been more knowledgeable or more informed of my medical care in the hospital, I might have gotten an immediate diagnosis. It never occurred to me to ask which painkillers I was receiving or which other measures the doctors had prescribed. They were doctors. Shouldn’t they know best?

But it’s this lesson that prompts me to share my story. As a patient, you need to be proactive and involved in your own care (or have a family member or friend who can advocate for you and ask these questions, if you’re not up to it). Make sure to ask what medications you are receiving, orally or via IV. And if you feel uncomfortable taking Optalgin, request a different drug. This is also important to know as a tourist — if you walk into a pharmacy and request a painkiller for a headache, be sure to know what you’re taking.

And it isn’t just Optalgin that might be a danger. Be proactive and involved any time you undergo a medical procedure or are hospitalized. Make sure you have all the information you need. You never know when you might be the one to save your own life.

What’s with Optalgin?

Metamizole (marketed in Israel as Optalgin, manufactured by Teva Pharmaceuticals) was first produced commercially in Germany in 1922. Originally, it was available worldwide. Then, it was found that there was a risk of it causing agranulocytosis.

The drug contains the active ingredient dipyrone, which can lower the count of white blood cells to dangerous levels. Agranulocytosis is a potentially fatal condition in which the neutrophils in the white blood count fall dangerously low. Signs and symptoms of agranulocytosis include fever, chills, weakness, sore throat, sores in the mouth or throat, bleeding gums, bone pain, low blood pressure, fast heartbeat, and trouble breathing. According to the research, this condition is fatal, on average 24 percent of the time.

Because of this danger, Metamizole was withdrawn in about 30 countries. The US FDA banned its sale in 1977, following Sweden’s ban in 1974, and the UK, Japan, Australia, and most of the EU followed suit.

Estimates suggest that one in 1.5 million users of the medication will suffer from complications, with up to 10 percent of those cases resulting in death.

A European Medicines Agency report in December 2018 suggested the “potential to induce agranulocytosis may be associated with the genetic characteristics of certain populations.”

In Israel, however, the drug is available over the counter to anyone.

“This side effect seems to occur more frequently in prolonged use and in women,” says Chana Berkovits, PharmD, a US-trained pharmacist currently practicing in Israel. “It’s very rare after a one-time dose. While it’s hard for me to endorse the conclusion that adult Americans should always refuse Optalgin, if someone is uncomfortable taking it, they can ask for an alternative form of pain relief — as I myself have done in the past.”

For a woman seeking alternative pain relief after birth, Chana says that the typical alternatives are acetaminophen (which she says isn’t helpful for postpartum contractions) and ibuprofen. “Interestingly, one of the risks of regular use of ibuprofen is a GI bleed, also a serious complication,” she adds. “Incidence of this complication is significantly higher than the incidence of Optalgin-induced agranulocytosis. But it doesn’t have as high a fatality rate.”

Chana notes that every medication has its side effects — some more or less common, some more or less dangerous. “When counseling a patient about a new medication I’m not going to list every single possible side effect, I’m going to tell you about the common side effects, what to do about them, and what to look out for that could be a sign of a more serious side effect.”

“Every medication has risks,” Chana adds. “When deciding treatment the provider always has to weigh how much benefit the treatment will provide versus how much harm it can cause. An extreme example is chemotherapy — it wreaks havoc on the body but the alternative is probably death.”

Chana underscores the importance of the patient being aware of all medications received. In the event of any significant health event, one of the first questions a patient should be asked is what medications they have taken, so that the physician can determine if the medication could have caused the adverse effect. With any side effect, especially serious ones, there is a process to report it the governing body — the FDA in the US, and the Misrad Habriut in Israel. If enough reports are received, the agency will investigate to determine whether the benefits still outweigh the risks.

(Originally featured in Family First, Issue 919)