A Long Battle Against an Illness With No Name

No one knows what's wrong with Rosemary Breslin.

More than 4 1/2 years ago, at age 32, her body stopped producing red blood cells . Since then, she has been forced to look at death.

She has been through blood cell transfusions, gamma globulin and steroid injections, chemotherapy and the insertion of a permanent catheter in her chest. Still, doctors can give her no answers.

"I've lived in the labyrinth of the medical system," says Breslin, a New York writer. "I've dealt with good doctors, bad doctors, hospitals, insurance companies, billing offices, other patients, my family, other families, other lives, NURSES (who deserve to be in capitals), bills, drugs, living and dying. I'm not some expert. I'm just somebody who happened to get sick, and I think I've seen and learned some things that I can share with others."

Here, she takes us to the beginning . . .

I was standing in front of a country inn waiting for my husband. A car dropped off four old ladies at the curb. They had two canes, one walker and over 300 years among them. On the small step leading to the inn's heavy front door, the first woman teetered back and forth precariously, so I ran over and held open the door until the last woman, with the walker, had entered.

"Thank you," she said.

"No problem," I replied.

"Wish I had none," she said as she shuffled along and smiled at me, the picture of health, my cheeks still rosy from a tough morning bike ride. I hesitated, then answered lightly, "Me too."

As I watched the old woman from behind, I figured it took a little loosening up of her joints and perhaps a couple of pills to get her to the inn.

It took me two separate transfusions of two pints of red blood cells, six half-gallons of intravenous gamma globulin over a three-day period, a six-pack of syringes for the road and a 12-pack of some drug that's not working but that the doctor wants to give a few more weeks just in case.

I made sure I carried my red Patient Medical Alert Card that says I have an implanted Port-a-Cath access device, and I reminded Tony, my husband, that in an emergency I needed irradiated red blood cells. None of the plain old stuff for me. All this before I even packed.

This part of my life started four years and seven months ago, when I was 32. Always healthy, I felt tired for a couple of months.

At first I didn't pay attention to it, though it got so bad I couldn't really leave the house. By then, I had diagnosed myself as having AIDS. Of course, I had no idea what the early symptoms of AIDS were, but I knew I had it.

The day after I collapsed on the way out of a burger joint--the owner ushered me out of there quickly when another customer questioned, "What did she eat?" and got me in a cab whose driver asked, "You're not gonna throw up, are you?"--I finally went to the doctor. Within five minutes of administering a blood test, the doctor said he was reasonably sure I did not have AIDS.

The doctor also told me I had no red blood cells, but he added happily, "There are no signs of leukemia." I thought, "Thanks, Bud, that's great; I hadn't even considered that one." He then told me I was about to be hospitalized for two days and given seven pints of red blood cells.

A Battery of Tests

Over many months, seven bone marrow tests and hundreds of blood tests, no doctor could figure out what was causing my disease, disorder, illness--all different terms used by different doctors. The tests helped doctors speculate that maybe I caught a virus or had a toxic reaction and that my body created an antibody to fight the invader. Doctors believe that perhaps the antibody successfully did so, but did not stop there and began attacking my healthy red blood cells.

Almost all the doctors familiar with my case have speculated that this illness may simply disappear as mysteriously as it first appeared, though as the years pass I believe this less and less.

Doctors don't know the cause of this disorder or how to cure it, and trying to figure out a way to treat it has been "a crap shoot," to quote one of the country's foremost hematologists. And check out the words I'm left to base my life on--speculate, maybe, perhaps.

No one has seen my illness before. At least none of the many doctors I have visited or contacted around the world. They've seen similar illnesses, but no, nothing quite like it. "Fascinating" is a word I've heard a lot. "Yeah, good, but what else can you tell me?" I've asked.

"Not much, but from a research standpoint this is very interesting," is an answer I've also heard more than once. One doctor returned from a convention and said, "We had a long discussion about your case." It's been a lifelong fantasy of mine to have a bunch of doctors sit around and dissect me. What did they call me? Female Patient X?

After the initial transfusion of red cells, I had two others--because they worked and because the doctors, after ruling out all other possibilities, thought this might be a freak thing that would go away. It didn't.

Then I was given massive doses of steroids, which also worked in that they stimulated production of red blood cells at first--only they made me crazy--alternately moody, tired and speedy. And, used long term, steroids like prednisone affect the liver and kidneys, among other organs, and having those vitals replaced would use up too much of my health insurance.

After a year and half, the doctor gave me the "choice" of sticking with the steroids, which were less and less effective or trying a new treatment.

In Search of a Cure

So I tried intravenous gamma globulin. Maybe that would be a cure. Five hours a day for five days straight, I sat in a room in the doctor's office known as the infusion room with a clear liquid dripping from bottles into my arm. For eight weeks afterward, my red blood cell count remained high and I felt that maybe something had finally worked.

It had and it hadn't.

After two months, my count began to drift down, but at least here was something with no side effects that worked for a fairly long period of time and did not drive me to wash whites at 2 in the morning, which was my favorite activity while on steroids . . .

When I realized the gamma globulin was not a cure, I completely folded. I could feel my insides shift and the foundation give way. I'd seen it on TV, when they show buildings being blown up. There's a moment when the building sways a little, but remains a structure, sort of fighting to stand, then crumbles in a heap. Only a building gets to stay demolished; I had to rebuild myself.

But what's the point of having something like this happen to you if you don't get to be a little dramatic once in a while? In a way, this setback helped me settle into things. My hopes had been so high that gamma globulin was a cure I was shattered when I had to accept that it was only another uncharted course of treatment. And an extraordinarily expensive one.

So I settled into a routine: Every four to six weeks, for five days straight, for five hours each day, I'd be hooked up and intravenously fed three 750 milliliter bottles per session at a cost of roughly $3,000 a day. This is what it took to keep me alive.

In conjunction with gamma globulin, the doctors decided to try more aggressive treatments. Essentially, knock this thing out of my system. Since I had responded to hormonal therapy--steroids and gamma globulin--with limited success, the doctors wanted to experiment with chemical therapy. Let them try to slip that one by you.

Hairy Ears

"Chemical?" I asked, swinging my legs over the side of the examining table. "As in chemo?"

"Don't take it that way," my doctor answered, though all I could think of was, "Am I going to lose my hair?" He continued to explain, but most of my mind blanked. Later I got the nurses to fill me in. Through pretty much random selection I started with Cytoxan, which made my joints hurt but did nothing for my blood.

I moved on to Cyclosporin, which had no side effects but also did nothing to help, and to methatrexate, which had me crawling to the bathroom and throwing up as often as 15 times a night but did show signs of working. Oh, yes, it also caused hair to grow on my ears. When I showed my ears to my stepmother she said, "We'll get them waxed."

For the three months doctors tried this drug, I would be fine on the day of treatment, violently ill the next day, mildly nauseous for the next two days, get back my strength the next day and have one good day before the next round. I also continued to get intravenous gamma globulin, only with greater and greater frequency.

Though there had been some small signs that methatrexate was working, one day it simply stopped helping. Fortunately, the dose I was on was too small to make me lose my hair, and immediately after stopping, the hair on my ears went away.

All along, I've been one step ahead of the doctors, my body telling me when things were working and when they weren't. And my body was telling me that after three years that the veins in my arms couldn't take any more needles. I've got small and weak veins, wimpy ones that hide deep under the skin.

Whether it is to take blood or for treatment, nurses have to tie the tourniquet tight, slap my arms while I pump my fist, run hot water over my arms or put hot compresses on them, all in search of a good vein. Even then, during treatment, my veins often blow out, kind of like a car tire. I knew from my friends in the infusion room that there was an alternative.

A Circle of Friends

You get pretty chummy with the crowd getting treatment. Conversations almost always starting with great delicacy.

"Whattya got?" is the usual opener.

On my very first trip to the infusion room, a little weepy but in that stoic Greta Garbo kind of way, I turned my head aside as the nurse hooked me up to bottles and poles. My eyes fastened on another nurse, who took a needle attached to an IV and stuck it in a man's chest.

'Oh my God, he gets his treatment right in his heart,' exploded in my head. Later, when I repeated this, I learned the man had a Port-a-Cath, a metal device the size of a pocket watch, which is placed under the skin, usually in the chest. A tube is threaded through a vein and connected to the device. Treatment is administered through the device by merely pricking the skin, so there is no assault on the veins.

It's pretty incredible that, while sick, I met the person most people spend their whole lives dreaming of. And married him. Maybe the person who gave me a little hell in my life decided I deserved a little heaven. I don't know, but we're having a great time.

Anyway, a little over a year ago, less than eight weeks after my wedding, I met with a surgeon who described the Port-a-Cath insertion procedure. It is relatively simple and done on an outpatient basis. He estimated the operation would take a half hour at most. It took over two hours. I was awake and aware for all of it.

A few curses during the procedure gave me a good idea that it wasn't going the way he had anticipated. After a third unsuccessful attempt to thread the catheter through a vein, to break the tension he announced, "This shouldn't be a surprise. Nobody knows what's wrong with her anyway."

Later, after finally getting the catheter through, the surgeon told me he'd performed 4,000 of these procedures with no problem. I began to wonder about karma. A serial killer, I must have been a serial killer in a past life.

A Constant Reminder

For two weeks afterward, I was really depressed. Now there was something permanent, a constant reminder all is not right with me. And all the tugging and pulling in my chest and neck had left me very sore. My neck listed to one side. I had two scars and, directly below my collar bone, this rounded lump. A thin stream traveled across my chest because the tube pushed the vein out.

Initially, I was in considerable pain, but I also used this as an excuse for a round of self pity. "I'm physically marred," I cried. "I'll never be able to wear a low cut dress," as if this were a major problem. But I sank even lower than that. If there was a reason to feel sorry for myself, I found it. "And now I have to carry around an ID card because I can set off metal detectors at airports," I whined, even though I thought this one was pretty funny.

After my minor surgery, I settled back into a fairly regular routine of monthly gamma globulin treatments made much easier by my "port," which doctors and nurses say is one of the most beautiful they've ever seen. But last March, my body decided things were going too smoothly and decided to shake them up a bit.

Gamma globulin, which had been less effective over time, stopped working almost completely, or worked just enough to let me drag along. While doctors determined the next course of action, I had a new diet of gamma globulin with a side of red blood cells.

If my illness doesn't kill me, the cure certainly will.

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