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Kelly's HuGStory

I planned my pregnancy meticulously. I was 29 years old. I had been married for just over two years. We had purchased a home the year before. Perhaps most importantly, I had just finished the most devastating year of my life. My mother was diagnosed with colon cancer in 1995. It returned in her lungs in the fall of 1996. Early in 1997, she resumed chemotherapy. In April we learned the cancer had spread to her brain. The time between that day and her ultimate death in January of 1998 was the worst I could have ever imagined. As she got sicker and sicker and became less and less the mother I had always relied upon, I became more and more like a zombie going through the motions of a supposed life. Watching someone you love die, especially die a slow, menacing, painful death, is indescribable. As she became less and less functioning, the mother-child roles reversed. My sisters and I provided for her every need. There were long afternoons spent trying to have normal every day conversations, pretending she wasn’t dying. There were days I thought it was more than I could bear. There were days when I felt that I would rather die myself than go to her home (my childhood home) to see and care for her. Her death was simultaneously the worst pain and biggest relief I have ever experienced.

I was ready for some joy in my life. I wanted to be a mother. I thought I had it all covered. I scheduled a pre-conception visit with my OB/GYN. I started taking pre-natal vitamins. I was screened for immunity to the chicken pox virus since I had never had it as a child and it can cause complications during pregnancy. I scheduled a colonoscopy. Since colon cancer is hereditary, my internist wanted to do a baseline test around age 30. My husband and I tried for 4 months to conceive. In November we were successful. A pregnancy test in December proved positive. We were thrilled. I felt finally my life was turning around.

There was never any doubt in my mind that I would have morning sickness. I have never been able to take birth control pills. I tried many different brands over the years and always went off them due to the extreme nausea and vomiting they caused. Since birth control pills mimic pregnancy, I was fully prepared for morning sickness. No one however, is prepared for hyperemesis gravidarum. I started feeling nauseous on New Year’s Eve, 1998. I thought “oh well here it is. I’ve been waiting for it.” I spent that night and the next day in bed. I did the ginger ale, crackers, etc. thing. By 6.5 weeks I was throwing up. My first scheduled appointment with the OB wasn’t until January 10th, or 10 weeks. I called that first week in January after 24 hours passed without keeping anything down. I went in and was immediately admitted for fluids. Little did I know that this would be the first of many visits. I went home after 8 hours with a prescription for Tigan, thinking I would be all set. I had never even considered that there would be a drug I could take for nausea. The doc even prescribed suppository form so I wouldn’t have to try and get pills down. I was confident. Even more so when an ultrasound the next day confirmed I was carrying only one baby and he/she looked fine. I thought “I can do this.”

That feeling proved short-lived. Within 24 hours I came to the realization that the Tigan did nothing. After another 24 hours, I called the OB again. This time he prescribed Reglan over the phone. I remember crying to my husband that I couldn’t possible get the tiny pills down. Liquids would always prove to be the worst for me. I remember very clearly so many times over the next few months feeling like I was dying of thirst, but at the same time being repulsed by the thought of drinking even the smallest drop of liquid. After a few days I stopped taking the Reglan. It didn’t do anything. Somehow I made it to the 10-week appointment. Well, kind of anyway. I made it to the office. The doctor took one look at me in the hallway and sent me right over to the hospital again. Another admit. Another IV. Home again within about 10 hours. This time another appointment 3 days later. At that appointment I got to hear the heartbeat for the first time. Despite how I felt physically, I remember being elated at that sound. Still, that same day a family member said to me “Now didn’t that make it all worth it?” And I recall very clearly thinking to myself “No. Maybe when the baby is here I’ll be able to say that. But right now, no. Its not enough to outweigh this constant sickness and hopeless feeling.”

I struggled to drag myself to work over the next couple of weeks. I had wanted to save my sick time so I could get paid during my maternity leave. As the days passed and I continued to feel worse and worse I had to let go of that concern. The last weekend in January was particularly bad. I was home alone all that Saturday as my husband worked. I tried repeatedly to eat. I kept telling myself I was in control and damn it, I was going to nourish my developing baby if it killed me. By that evening I though it just might. I was forced to call the OB again. Back to the hospital, this time overnight. Discharged the next morning with a prescription for Compazine. And an appointment for Monday. That day my doctor said it was time for home IV therapy. A nurse came to my home that evening to insert a pic line into my arm. That was a piece of cake compared to how I was feeling. I did a lot of thinking about pain versus nausea during those months and have come to the conclusion that I’ll take pain any day.

Home IV treatment proved daunting at first. The number of steps and things to remember seemed overwhelming. I was convinced I would forget an important alcohol wipe and give myself a blood infection. Then I was convinced I wouldn’t get all of the air out of the tubing, thereby sending a bubble to my heart and killing myself instantly. In total I would administer my own IV treatments 4 hours every day for 10.5 weeks. By the end I was a pro. The set-up and take down process took mere seconds by the end of my treatment.

Despite my crash course in nursing, February and March were to be the worst months for me. I wouldn’t have thought that was possible after January. I prayed to reach the magical 12 weeks when I convinced myself I would recover and finally be able to enjoy my pregnancy. That milestone passed with no relief. My OB said sometimes 16 weeks was the magic number. I focused on that. I cried a lot. I prayed a lot. I talked to my mother a lot. I couldn’t shake the feeling that if only she were alive, this wouldn’t be happening to me. Rationally, I knew that didn’t make sense. But she had always been able to make me feel better and my inconsolable state was intensified by her absence. My husband tried. But he was at a loss. Try as he did to hide the look of disappointment on his face as he came home yet another day to find me in the same place, wearing the same pajamas I had worn for days, crying yet again, I could still see it in his eyes. We never talked about the baby. Only about my misery and why it was not getting any better. He tried valiantly to find things I could eat. He took care of the house. But I knew this was wearing on him as well. I spent hours on our couch staring out the window. I was so jealous of my neighbors as they came and went and had normal lives. I’d see them come home with packages and was convinced I’d never again be able to do something as simple as going to a mall. I was as depressed as I’d even been and more than once begged my husband to just kill me. I remember very clearly once asking him (quite seriously) if he thought there was anyway that I could die, but be kept alive artificially until the baby could be brought to term. More than once I screamed at him that I couldn’t go on like this anymore. Those were my lowest points. When our words got ugly. “What would you like to do then?” he’d ask, daring me to say the word we were both thinking. There were days I thought about termination. It was only through the support of my husband, family, friends, and especially my doctor that I was able to keep that door closed, even if I couldn’t completely keep the thought out of my head.

My IV therapy was supposed to last 2 weeks. I saw my doctor and we agreed to try to discontinue it. Two days after the line was removed, I awoke with a horrible pain radiating from my back around to the front of my abdomen. Pain so bad I was doubled over and screaming for my husband to get me the phone and call the doctor. We went to the ER. By then, the pain had subsided. The next day I had an ultrasound to rule out a kidney stone. Nothing showed up. That Friday, at work, the pain returned, with a vengeance. I had been working at home as much as I could while my IV ran, then dragging myself into the office in the afternoons. My boss was a Godsend in the amount of flexibility she allowed me. It happened about 3:00. I was in my 14th week. At first I shut myself in my office and prayed it would go away again. I knew there was no way I could drive myself anywhere and my husband was not close by. I called my OB, who was in surgery. After an hour, the pain was getting progressively worse and I knew I had to do something. I have a very high tolerance for pain, but this was putting me to tears. I went down the hall to a friend’s office. She looked at me and screamed for someone to call an ambulance. In the ambulance I started to vomit and hyperventilate. They took me to the closest ER where I lay for the next 5 hours in agony. They gave me a shot of Demerol, which merely took the edge off and wore off very quickly. I remember writhing and sobbing in pain like a wounded animal. My husband arrived. The staff doc called my OB. She had me transferred to her hospital, close to my home. I was admitted for the weekend. The pain that began at 3:00pm lasted until 1:00am. Then it was gone and I was left with my nausea and vomiting, plus this new gift; the numbing fear of not knowing when or where that pain would over take me again.

By the time I was released, my OB, in consultation with a urologist, had determined that my near constant state of dehydration over the last few weeks had lead to the formation of very small, gravel like, kidney stones. Looking back at the kidney stone attacks, now, from the vantage point of having been through labor, give me labor any day! Kidney stones are by far the worst pain I have every felt. Some medical professionals since then have told me it is the worst physical pain experienced by humans. The decision was made to re-insert my IV and begin the home therapy again. I had a new pic line inserted the next day and it would stay there until I was 22 weeks along.

Soon after that I gave up trying to go to work at all for a period of about 3 weeks. The range of emotions I experienced was vast. Despair, depression, anger, and guilt to name a few. I felt guilty about being so incapacitated. About not being able to do anything or go anywhere and about my husband having to wait on me. I also felt guilty whenever I would cry in front of the IV nurses who came to change my dressing and check on me. I would think about their other patients, the chronically ill children and cancer patients they saw on a daily basis. I was pregnant! This was supposed to be good thing, a happy time. The anger came from feeling cheated; cheated out of my pregnancy. Cheated out of anticipating my baby. Cheated out of my health. Just cheated.

I lived for the light at the end of the tunnel. When 16 weeks passed and I was still vomiting daily, even blood sometimes when there wasn’t even any bile left in my stomach, a nurse told me sometimes 20 weeks was a turning point. I had a new target. In the meantime, the frequent ultrasounds my OB ordered to check the size of my baby gave me glimmers of hope.

What would be my last low-point happened at 20 weeks. I saw my OB and she told me she was seriously concerned about my lack of weight gain. She also confessed to me that she had never seen such a severe case of HG as mine. She was concerned as to the viability of the pregnancy and wanted me to see a high risk OB. Her words echoed through my mind. Concerned as to the viability of the pregnancy. Every cell in my body screamed no. I had not gone through all of this for nothing. I could not lose this baby. I had made it 5 months. I was more than half way there. I drove home in a fog. On a whim I drove to McDonald’s. I got home and forced myself to eat the fast food. Although I felt horribly nauseous after, I also felt triumphant; it stayed down.

My turning point would be 22 weeks. That week I saw the high risk OB and a nutritionist that specialized in HG. I hadn’t even known such a specialty existed. The doctor told my husband and me that the nutritionist was the nationally recognized expert in the field. Talking to her turned out to be very freeing. She was the first person to say to me that it was ok to eat whatever I wanted at the precise moment I wanted it. If that was potato chips and chocolate cake at 8:00am, go for it. What a concept. And from a nutritionist! She explained to me that with this condition, calories were what counted, not nutritional value. Her name is Miriam Erick. She helped me immensely and I recommend her book, “No More Morning Sickness”. The OB proved helpful too. He told me that he had never seen this condition last into the third trimester. Now I know from my own research that women do indeed suffer from HG until delivery. I myself never completely left it behind. But for the first time in a long time, I had hope.

By the time I began my third trimester, I felt like a new person. I definitely turned a corner. I was drinking a liter of first lemonade and then water (ice cold only!) a day on my own. This was a HUGE breakthrough for me since liquids had always been my biggest problem. And I took the nutritionist’s advice and ate whatever appealed to me at the time. My IV came out for good and I was able to return to work full-time. I ended up working right up until the day before my daughter was born. Although I never fully recovered (I had bouts of nausea and continued to vomit periodically until delivery), it was like a whole new world to me. My husband and I were actually able to begin preparing for the baby. I finally began gaining weight (23 lbs total ultimately). Compared with the last 6 months, I felt great.

I made it all the way to 39.5 weeks. At my 39 week appointment I told my OB the nausea was back more ferociously than it had been in while. I wasn’t prepared for what she said next. “That’s it. Enough is enough. My medical decision is that you need to be induced. How about tomorrow?” (My OB had long ago told me that she was delivering this baby, not one of her partners, no matter what. I was to page her directly whether she was on call or not.) I was induced and went through labor for 8 hours before fetal distress and my failure to progress past 4 cm lead to a c-section. True to form, I was throwing up on the operating table (anesthesia). But as soon as the baby was out I felt better. And I was starving! But best of all I had a beautiful 8lb baby girl! Not the small baby I was prepared for.

I recovered from the c-section quickly. I refused to take Percocet for pain since it has made me nauseas in the past and I wanted no more of that. Labor and delivery were nothing compared to the preceding 9 months. I was elated from the moment of her birth. She’s 17 months old now and I still haven’t come down. Impossible as it was to see at the time, it was worth it. She is the joy of our lives.

Hyperemesis Gravidarum is pure hell. And although people can empathize, unless you’ve experienced it, it is impossible to imagine the misery it can cause. My heart goes out to those women who were driven to terminate their pregnancies because of this debilitating condition. I can completely understand what causes some women to make that decision. Support makes all the difference in the world. I am fortunate to live near a large city with many world-renowned hospitals. I was also fortunate to have an understanding husband, helpful family, and an obstetrician who made it a priority to help me deal with this very real and dangerous condition. I’ve learned from my experience with HG to never again take “feeling good” for granted. Or the supports I have in my life either.

To those of you suffering right now, I hope you can take some comfort in my story. If I can give you any advice it is to try and eat whatever you think might stay down, whenever you think it might stay down. Also eliminate noises, lights, and smells whenever possible. Breathe fresh air when you can and try medications that your doctor suggests. Its difficult not to worry about what impact they will have on the developing baby, but even if there is a chance they will give you some relief, and allow you to nourish yourself and thus your baby, its worth it. No drug helped me but I took: Tigan, Reglan, Compezine, Vistral, and Zofran (if you don’t know, Zofran is a drug commonly used for chemotherapy patients). Plus Demerol for the kidney stones. All of that and I gave birth to a healthy 8lb baby. She continues to be healthy, active and quite bright if I do say so myself! Don’t take anything however, without your doctor’s ok. Also, if your doctor is not taking your condition seriously, FIND A NEW DOCTOR.

I’d like to have another child, but I’m scared to death. I can’t imagine going through it all again, this time while caring for an active toddler. But I know I will some day. Next time at least I will know what to expect. I’m not naďve enough to believe that knowledge will make a huge difference, but at least I know what I’m getting into this time. There is no doubt in my mind that I will have HG again, but my OB had promised to treat aggressively from the minute I get pregnant. I’ll hope for the best. But I’ll be prepared for the worst.

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