32 years, Toxic Shock Syndrome.

Today is the 32nd anniversary of my journey through toxic shock syndrome. Things could have ended very differently for me. This is an except from my book, Receiving Birth, detailing that experience.

Receiving BIRTH 23 May 2, 1986 – A Friend’s Help

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I live for vacations! With some level of certainty, I think that I must have been a sea creature in a past life. Whether it is the ocean, the pool, or even my own shower, water always makes me feel good. I feel the most grounded at the beach, my toes buried in the sand.

Four years ago, Mom and Dad sought out a vacation home in Florida, and they did it right. There is a private beach for the gated community, swimming pools and a golf course. I especially loved getting up early and watching the sun rise over the water.

I had been looking forward to my trip to Hutchinson Island, Florida for months, but now it was over. I can remember when I was small and Grandma would say, “Susan, you are as brown as a berry.” Well, that was me now, as I boarded the airplane that would take me back to Pittsburgh. I hate to travel alone, and I am just not good at it. So many things could go wrong. I have never, but I could, miss my flight, forget a bag or lose my purse.

Today, I am on my own and I have a connecting flight in Philadelphia. Yuck! Normally, I would have  gone home with Kathi and her family and just pretended to be another one of her kids, letting her take care of me. I couldn’t do that this time because tomorrow, my friend, Lynn, is getting married. She has been dating her soon- to-be-husband since high school, and it will be nice to see so many faces that I have not seen in awhile.

I sit in my window seat, praying that I don’t have to disturb the woman next to me, should I have to use the restroom. The  flight attendant asks me if I would like a drink, and I say no. All day I have had a pounding headache. Maybe I am dehydrated, from hours in the sun. Sitting in the sun is my favorite pastime. Yes, I know that it is bad for me, but I can’t help it. page32image1008

The sun was bright every day, and the ocean was warm. The one thing that could have made this trip better would have been if I did not have my period. Luckily, my cramps were not very painful this month. Whoever invented the tampon gets a high five from me.

Thank God, I no longer wore pads. My period ruined many a good swimming day when I was younger, but no more. I am a huge fan of the tampon.

Speaking of tampons, I probably didn’t need one anymore since my period was nearly over. I would have to remember to remove it during my layover in Philadelphia.

The bathroom at the Philadelphia airport was  filthy. It was late at night and it was obvious that no one had cleaned it for hours. I walked in and right back out. I didn’t really need to go to the bathroom, so the tampon would just have to wait until I got home.

By the time I got home from the airport, it was nearly midnight. I was surprised when I experienced a little pain when I removed the tampon. I changed into my pajamas, washed my face, brushed my teeth and was very happy when I slid into my familiar bed.

I don’t wake until ten o’clock the next morning. Usually I am up by eight o’clock, but this morning I feel like I have the  flu. Every muscle is aching and if I thought that the headache that I had the day before was bad, it was nothing compared to the one that I have now. The sun is shining in my window, burning my eyes. I sit upright slowly because I know that I am either going to be very dizzy or I am going to want to vomit.

I squeeze my eyes shut as I feel my way to the kitchen, get a Diet Pepsi, and wash down a few aspirins.

Going to the mall for a new dress to wear to the wedding was the plan, but now I am considering wearing a dress that I already have in the closet. I drag myself to the bathroom and get into the shower. Standing in the shower, water pounding on my head, I do start to feel a little better. Afterward, with my hair still wet, I climb back in bed, a cold washcloth covering my eyes so I can sleep and get rid of my headache. Every time I sleep with a washcloth on my face, I think of Reuben Kincaid from the Partridge Family. page33image952

It is 12:30 before I wake again, and I am surprised that I am now feeling pretty good. I must have caught some type of a bug, but, hopefully, now it is gone.

The wedding starts at four o’clock and I am dressed and at the church by 3:30. It is a sunny, beautiful, spring day. Outside the church, I spot a few friends, and we go into the church together and take our seats. Lynn is my first friend to get married and I am so happy for her.

I sit in the pew, and my head reminds me that I should have taken a few more aspirins before coming here.

The ceremony is very nice and I am happy that we all decide to drive together to the reception. The groom and his groomsmen remove their jackets and we all begin dancing, drinking, and having fun. No drinks for me today, I think, as I order a ginger ale. The last thing I want to do is drink a few beers and feel even worse.

No one wants the night to end, so the after-party is upstairs in the hotel rooms of some of the out-of-town friends. At about 11:30, I have had enough. I tell my friend, Ann, that I am going to go in the other room and lie down for awhile. While it seemed like a good idea at the time for all of us to drive there in one car, I am sure wishing I could go to the parking lot and drive home to my own bed.

I am not asleep long when the pain in my stomach wakes me. Quickly, I run to the bathroom and throw up. I continue to do this for the next hour. When my friend returns to the room, she assumes that I had too much to drink and leaves me alone. Thankfully, I fall back to sleep until eight o’clock in the morning. Everyone else is also up and they decide to stop for breakfast before we go home. 

There are four of us sitting in the booth at the corner diner. The smell of the breakfast food sickens me. Everyone is feeling terrible, but theirs is alcohol-induced  flu. I tell Ann that I didn’t have anything to drink and I tell her how I have been feeling.

“Oh my God, I think that you have toxic shock syndrome,” she said. Rolling my eyes, I calmly tell her that I do not have toxic shock, I just have the flu.

“When was your last period?” she asks persistently.

“I just finished with that yesterday,” I tell her, getting annoyed. “Stop pushing your paranoia off on me. I just have the  flu.” I look down at my hands and I notice that my palms are red. They are red like they have been badly burned. Ann sees me looking and she grabs my hands. “Susan, a red rash is a symptom of toxic shock. I am not kidding you. You need to call your doctor!” Ann is getting agitated now. “Do you have a rash on that tan body of yours?”

“Ann, I have been wearing this dress for the last twenty-four hours, so other than my hands, I haven’t seen my body. When I get home, if I have a rash, I will call you, now could I please get a ginger ale?” The smell inside of the diner is making me feel ill again.

“Well, I am just trying to help you. Don’t you know the symptoms? What do you do with the warning sheet inside the box of tampons?” Ann asks, already knowing the answer.

“I throw it in the trash along with the box,” I say, making a joke. Our other two friends laugh along, but know better than to have an opinion here. They are both guys and I am surprised that they are not feeling a bit uncomfortable discussing feminine hygiene products. page35image960

“Funny, Susan, you are real funny.” Ann is pissed now.

“I’m not trying to make you mad, and I will call you when I get home if there is a problem,” I say.

Within the hour, I am getting out of Ann’s car. I turn and lean my arms against the window. “Thanks for worrying about me, Ann, but I think that I will be okay. I am just going to go into the house, get a shower, and go to bed.”

“Susan, do not go to sleep before you call your doctor. I am just trying to help. Will you call me later please?” Ann says concerned.

I start peeling off the dress as I close my apartment door behind me. I can’t wait to get in the shower, get in my sweats and then finally, get into my bed.

Naked, I step into the shower. Loving the feeling of the warm water on my tan skin, I take a deep breath and try to relax. It seems like a lot more than twenty- four hours since my last shower. God, I wish I would feel better. I reach to pick up the soap as I notice my body. Having just returned from Florida, it is very apparent where my swimsuit was covering me from the sun. The odd thing today is that where my swimsuit covered my body, the skin is bright red. Bright red like I spent the afternoon at a topless beach without sun- screen. I stand frozen as I remember what Ann told me earlier. I quickly wash and get out of the shower, wrapping my robe around my wet body.

What are the symptoms of toxic shock? I look under the sink to see if I can find the informational pamphlet in the box of tampons. Shit. There are seven tampons under the sink, no box. page36image960

Where can I get this information? Thinking quickly, I remember reading something about toxic shock in a book about women’s health that my mom gave me last Christmas. Pulling the robe tight around my body, I rush to the book shelves, my eyes searching until I  finally spot the paperback. I grab it and take it to my bed. I feel chilled so I pull on my sweats and sit on the edge of the bed. I fan through the book, and there it is. The last page, just before the index, I find it.

UPDATE: TOXIC SHOCK SYNDROME: Toxic Shock Syndrome (TSS) – a new disease that may be associated with tampon use. About 4-500 cases of a new disease have been reported within the last two years; some cases have been fatal. The disease involves a high fever, vomiting, diarrhea, headache, sore muscles; later, a very red tongue, a peeling red rash on the hands and feet and shock – a sudden drop in blood pressure that may lead to kidney failure. Ninety-six percent of the cases were in women: of these, ninety-five percent were menstruating at the time the disease occurred, and most were using tampons. Almost all of the afflicted women were found to have Staphylococcus aureus in cultures of their vaginas; a powerful toxin released by these bacteria seems to get into the body and cause the disease. At least, this is the current theory.

Pending settlement of the issue, we recommend the following suggestions for safe tampon use. Change tampons frequently; do not use them when flow is very light, or in between periods. Avoid super-absorbent tampons. Some are so absorbent that they adhere to the walls of the vagina, and when pulling them out many women notice pain. This is because the superficial layers of the vagina are also being pulled out. (The Ms. Guide to a Woman’s Health by Cynthia W. Cooke, M.D. and Susan Dworkin) page37image944

Okay, I am going to try and not panic. Yes, I did vomit. I do have a rash, a headache and sore muscles. I never get a fever, but I will take my temperature just the same. I rush to the bathroom to look at my tongue. I wipe my hand on the mirror that is still covered in steam from my shower. I stick out my tongue and it looks like I just ate a red popsicle. Oh my God, I think as I grab the thermometer and stick it under my red tongue. I go back to my bed and slide under the blanket. During the three minutes that I wait before remov- ing the thermometer, I remember that when I removed the tampon the night before, it was painful. Reading the mercury, I see that it says 102. This is so not good. Grabbing the phone book, I flip through it until I find my doctor’s number. It is Sunday, so the call is answered by the emergency service.

“What seems to be your problem today?” the operator asked.

“I think that I might have toxic shock syndrome. I have many of the symptoms and I don’t know what I should do,” I say.

“Please give me your name and number and I will have the doctor call you right back,” says the operator calmly. I give her the information and hang up.

My head is again pounding and I am beginning to think that Ann was right. I wonder if this really could be true. I can’t believe that I could really have toxic shock. I have so many of the symptoms that it is scary. I really have to get back into my bed. I grab the book and reread the symptoms. The scariest thing that the book says is that TSS can be fatal. I have no idea what I am going to do if I do have toxic shock.

The phone interrupts my thoughts. It was Dr. Dunsten. I told him my symptoms and after he asked me a few questions, he told me to call an ambulance for myself, and get to Allegheny General Hospital as soon as possible. He tells me that he will meet me in the Emergency Room. page38image1024

WHAT? Okay, maybe I do have toxic shock, but an AMBULANCE? I hang up and call Ann. I think that if I have to go to the hospital, I will call Ann and she will drive me to the Emergency Room.

Ann’s sister answers the phone and tells me that Ann is sleeping. I tell her thanks and hang up. Then I call my brother, but he, too, is not home. I call a family friend and get an answering machine. The rest of my family is still in Florida. Then I call another friend of mine, Dan.

“Hello,” he said.

Thank God, I thought. “Dan, can you take me to the hospital? I’m not feeling well and my doctor wants me to meet him at the hospital.”

“What? Of course, I’ll be right there,” Dan says, not sure what else to say.

I change my clothes, get a glass of water and get back into bed until I hear Dan knocking at the door. As I get out of bed, I grab my stomach and again rush to the bathroom to vomit.

“Are you sure you didn’t just have too much to drink at the wedding?” Dan asks through the bathroom door.

“No, only ginger ale,” I tell him as I open the door, holding a towel to my face.

We leave the apartment, he helps me get into the car, and we are off to the hospital. The sun shining through the windshield is making the stabbing pain in my head feel even worse.

Before I know it, I am on a gurney in the Emergency Room and the nurses are slapping my arms. I will learn later that the veins in my arms had turned as I went into shock, making it impossible to insert a needle to start an I.V. I could hear a nurse say that she thought that they were losing me. In my memory, I am a spectator. I am standing up high in the corner of the room, as if I am standing on a ladder, watching the two women and the doctor trying to stabilize my vital signs. page39image944

The nurse heads to the waiting room to tell Dan that he needs to call my family and get them to the hospital. When he asks her how I am doing, she tells him that the doctor was working hard to stabilize my vital signs, but that that was all she could tell him since he was not my family.

Dan would tell me later that I really scared him. He said that we were nearly at the hospital when I became unconscious. When he pulled his car into the Emergency Room lot and asked security for help, it was then that my doctor and two others went to the car to help him.

The events of the next few days are a blur to me. With the help of heavy doses of antibiotics, the poison in my blood began to leave my body. Dr. Dunsten sat on the edge of my bed one afternoon and told me what was happening within my body. He told me that if I had not been educated about the symptoms of toxic shock and I decided to just sleep it off, I would have clearly died in my bed. He told me that it was a good thing that I took the time to read the informative product warnings that came in the tampon boxes.

He continued to talk; his lips were moving, but I did not hear him. In my mind, I was replaying the conversation I had with Ann inside the diner. I had to remember to hug and thank her the next time I saw her.

It took days for my kidneys to begin to function properly again. Looking at my body was like looking at a stranger. The fluid in my body made me look like a balloon in the Macy’s Day parade. Every part of my body looked swollen. If you stuck a pin in me, you would expect me to drain gallons of water. page40image1000

Dr. Dunsten also admitted to me that I was the first case of toxic shock that he had ever seen. While driving to the hospital, he said he was  flipping through a journal trying to learn exactly the best way to help me. I owe my life to Dr. Dunsten and Ann. I would not be alive today if it was not for the two of them.

Bobby and Sherrie visited me the second day that I was in the hospital. Although we fought like crazy when we were kids, I always knew that Bobby would do anything for me. He was the big brother. As he paced back and forth in front of the window, I knew that he struggled with the feeling of helplessness.

Kathi was home from Florida that same evening and she too came for a visit. She told me that she did get in touch with my doctor. He told her that if it was not for my being so responsible for my own health by being informed about TSS that I would have died.

This puzzled Kathi. Knowing me as well as she did, she knew that I had never unfolded the information sheet and read it.

I told Kathi about the wedding and about Ann. I cried relaying this story, knowing how close I was to actually dying. I would have never been able to be married and have children. I would have missed so much of the life that I still had to live.

Recovery was long. I was plagued by side effects for months, and unknown to me, even years. More obvious were the nosebleeds and then the tiny red line that traced up my arm from blood poisoning.

There was not much data available about the long- term effects of TSS since the disease itself was so new. Many of the patients did not live through the initial symptoms of this awful disease.

 

 

 

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