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Drowning for Love

I was about 16 weeks along in my pregnancy when I started coughing. I went in to the doctor when I came down with a severe headache and couldn't get out of bed. He told me I had bronchitis after listening to my chest. He sent me home with antibiotics (a Z-pack). I took those for the 5 days and then five days later, when they still should have been working, I got stabbing sharp pains in my right side and shoulder.

I went in to the ER and the x-rays showed that I had pneumonia. They sent me home with more antibiotics, amoxicillin. Five days later, I followed up with my doctor and he said that it wasn't getting better and he thought they should have given me something stronger. He gave me more antibiotics, Keflex and a shot of antibiotics for good measure. The next day, I wasn't able to urinate. Within the next 5 days I had gained 14 pounds in water weight. I again went in to the doctors and he ordered an ultrasound of my kidneys, which I made an appointment for 2 days later.

The night before my appointment, I was so miserable and having trouble sleeping and breathing so I went into ER again. There they told me that I had Renal failure (kidney failure). They hospitalized me for a week all the while the IV's they were giving me caused me to gain another 40 pounds in water weight. They got my kidneys working again and sent me home where I thought I would die if I had to deal with that much extra weight for 4 more months.

Two days after I got home, I woke up with my hands and feet so swollen that I couldn't shut my fingers all the way or curl my toes. During that day, I also started getting winded just trying to eat. That night I again went into the ER because I was having so much trouble breathing. This time when they took x-rays, they decided to send me on life flight to a hospital about 300 miles north and told me that they were worried that I had severe Preclampsia and that the only cure was delivery and that I was too early in the pregnancy to save the baby.

I was scared that I was going to die on that flight. I was suffocating. I had to be sitting completely upright in order to feel a little satisfaction from the air I was taking in. They had to put a central IV line (it is run directly in to an artery in your neck and extends almost to the tip of the heart) in with me lying flat and they didn't have time to numb it because I was having so much trouble breathing. I did make it up to the other hospital where they put me on lasex to clear out some of the fluids of my lungs, because by the time I got there my lungs and heart were drowning in it.

They still thought that maybe things would start getting better if they could clear some fluids off. So two days after getting into ICU there, I felt a little better and was able to eat. I was hopeful that we wouldn't have to deliver. Then, later that day, I took a turn for the worse and they had to put me on a ventilator and made the decision to induce me. I delivered a beautiful 5-month-old fetus that lived for just an hour or so.

Immediately after that, all the fluids started just pouring off. I dropped 45 pounds of water weight over the next 5 days. Since then, I have racked my brain as to what could have been done differently. I tried to think of what I could have watched for so that I wouldn't have gotten so bad, but the thing that baffles us all is that I never had high blood pressure until I was about to die from all the fluids, then it jumped up to 220/105 or there abouts and they were giving me anti-seizure medication.

Even the doctors are baffled as to why I got so bad so fast. My story doesn't have a lot of hope but maybe it will give someone else some early warning signs that they may be ignoring.


Tina Roberts

intrahepatic cholestasis

In July of 2001 I lay on my bathroom floor bleeding and breast-feeding my two-week-old son, thinking that if I were to die from the post-partum hemmorhage I was having, I wanted him to know that his mother was with him in the most loving way until the very end. An emergency blood transfusion saved my life and it was not until much later that I realized that my bleeding was likely caused by a liver disease of pregnancy--intrahepatic cholestasis in which estrogen causes toxic bile to build up in the blood instead of being processed out of the body, causing severe itching to the pregnant woman and threatening the life of the unborn baby.

The itching I suffered was the most excruciating experience I've ever suffered--scratching only made it worse. My family got used to dining with me in restaurants with my feet submerged in a bucket of ice and water. I took cold baths so frequently that I stopped draining the tub. But memory is short and the pleasures of my boy long, so I had another baby, born in April of 2003. Now I knew what to expect and I went in for induction before 37 weeks gestations as most of the stillbirths occur late in pregnancy.

Unfortunately the delivery didn't progress and I ended up with a C-Section and sepsis leading to pulmonary edema. I was in the hospital so long that my second son had his bris on day of life 10! Although I almost died twice from the complications of ICP I consider myself lucky--I have two healthy boys.

Michele

Obstetric Cholestasis

My daughter was born full term at 38 weeks 5 days, spontaneous labor & vaginal birth. It was a terribly long, hard labor but other than that we had no real problems except the presence of meconium. I had no idea back then that my daughter had been in danger of preterm labor, fetal distress or even a stillbirth. I went through a 2nd ICP pregnancy just recently in 2006. The itching began around the same time, 4 months. I immediately went back to the same liver specialist & had the Ursodiol prescribed again. This time it took longer to begin working, at least a week, and then the relief only lasted a week or so.

The itching was much worse than in my first pregnancy also which I couldn't believe was possible. My doctor upped my dosage of the Ursodiol to 1200 mg a day & the itching seemed to subside. Then it would go away for a week or so & come back for a week or so. I couldn't understand why I was still having the itching and kept calling my OB & liver specialist & they said there wasn't anything else they could do. My liver doctor said we would do labwork biweekly to check my bile acid levels and if they ever got to around 40 that is when we would worry. They jumped around but were usually around 14-20.

At about 29 weeks the itching came back & this time never left. M! y doctor said I was already at the highest prescription of Ursodiol & prescribed me an antihistamine which did absolutely nothing. Creams, lotions, baths, showers, diet--nothing helped me. The itching was so bad it was actually painful--the itching itself, not just the scratching. It felt at times like a million bugs crawling on my skin & at other times it felt like millions of pins stabbing me at the same time all over my body, everywhere. Sometimes it felt like an allergic reaction to something--like an itchy sweater you just want to rip off but the itch was coming from inside me & so nothing relieved that feeling. Sometimes I felt it was burning me alive. Everything hurt--every item of clothing & shoes I owned, baths, showers, my sofa, bed sheets.

I would wear tank tops & flip flops in 40 degree weather if I had to go out because clothing that touched me was unbearable. I couldn't sleep, I really couldn't do anything but scratch even though even that didn't reall! y help & I felt as if I was going mad. I had to be taken out of work because I just couldn't do it--I couldn't sit at my desk & I couldn't keep enough clothing on to be in an office. I felt I was going mad. I even went to the emergency room one day who sent me to Labor & Delivery & I basically was just treated like I was crazy, no one had even heard of ICP. I didn't have much in the way of other symptoms--just elevated liver enzymes & bile acid levels & dark urine. But the itching--the memory of it will never fade. I know it sounds silly to say itching hurts but truly the pain was excruciating and the fact that absolutely nothing made it the slightest bit more comfortable or less painful was tormenting. I did a whole lot of screaming, crying, scratching til I bled & pulling my hair out. I wish those of you fortunate to not have this could at least fully appreciate the intensity of the itching. If we could bottle it, it would make an awesome war torture tactic--I would have done just about anything to make it stop.

My OB sent me to a High Risk OB who was very nonchalant & said all we could do was monitor the baby once a week. He again offered antihistamines which do NOTHING to help this type of itching. From what I understand, the very danger with this condition is that the bile acid levels can jump very quickly & anytime & that is what puts the baby in risk of distress & possible stillbirth so monitoring once a week really didn't relieve those fears. I was having my bile acid levels checked weekly now per my liver doctor .

My due date was January 5. The Tuesday before Thanksgiving I was told my bile acid levels had jumped from the normal range of 14 up to 89 & still the high risk ob was not concerned. He had his nurse call me, I explained my concerns to her--that my liver doctor had told me we'd be concerned if they ever to 40 & here we were at 89. I told her I feared this suddenly putting my baby in danger of fetal distress. She spoke with the doctor who just had her call! me back to tell me that "bile acid levels do not affect the baby." (This is contrary to everything I have read about this disease thus far.) I had to go the whole weekend of Thanksgiving with no comforting information from my doctor and the fear that something would go wrong with my baby. Thankfully this did concern my regular OB & she finally agreed with me that taking the risk of inducing my baby early & having him be in the NICU a couple of days would be better than any risk of a stillbirth.

We waited until the earliest she felt comfortable that his lungs would be mature & then induced this baby at 36 weeks 6 days. Everything went very smoothly and my baby was born extremely healthy, weighing in at 7 lbs. I thank God every day that he's here & that we took the chance in inducing him. I cannot fully describe the frustration, anger & fear I dealt with during this pregnancy due to all my doctors not having enough information on this horribly painful, torturing & dangerous condition. I really could have gone on forever about the way I was treated during my pregnancies but I wanted to keep it short enough that hopefully you would take the time to read it.

It angers me the lack of information that the medical profession has on this condition as well the conflicting information they provide and the lack of compassion they exhibit. Every day on Itchymoms.com I read stories from other women who are experiencing the same things--the horrible pain & perhaps even worse--the shrugging attitude from their doctors, not to mention those moms who have had babies stillborn due to this--I cannot even begin to imagine their pain, giving birth to beautiful babies and then immediately having to bury them.

Christine

intrahepatic cholestasis of pregnancy

ICP is a liver malfunction in which estrogen interferes with the liver’s ability to remove bile salts from the blood stream. The accumulation of bile salts in the blood causes itching in the mother, which can interfere with the absorption of fat-soluble vitamins and can be toxic for the developing fetus and result in stillbirth or pre-term labor.

In my recent pregnancy, I developed this condition and had labor induced to protect my child. I was very fortunate I did not develop ICP until after I had reached full term. My itching was mild and I had incredibly responsive doctors. Not everyone with ICP is so lucky. Many women must fight for the very few treatments available and must also educate their obstetricians on the condition.

As I look forward to my next pregnancy, I do so with mixed emotions. I have 60-90% chance of developing ICP with subsequent pregnancies. I am concerned and frightened about the health of my future child. I am sad that I will not again experience the unfettered delight and joy of being pregnant I experienced through most of my first pregnancy.

In my next pregnancy, I will be constantly worrying that every itch is the return of ICP bringing with it unbearable itching and threatening the life of my child. However, I still plan on having more children. Most women with ICP deliver healthy babies but at this point it is nearly impossible to identify who is most at risk for the most serious consequences of ICP - pre-term labor and stillbirth.

This condition is considered rare but many of us who have had it believe that many more women have ICP than are diagnosed. Women and doctors need to be made aware of the symptoms and the few options for treatment. In addition, more research must be done to determine the cause and develop better treatments.

Kate Meacham

CHOLESTASIS AND STILLBORNS

Itching could not be more terrible than with Intrahepatic Cholestasis of Pregnancy (ICP). You are probably thinking that itching is normal with pregnancy, right? Nothing is more frustrating than not being taken seriously when you are pregnant and having severe symptoms of itching. The itching that goes along with ICP is unlike any other type of itching. There is nothing visibly wrong, no rash, nothing, because it is all internal.

The itching is constant and takes its toll on the soon-to-be mom. There are other symptoms that few doctors pick up on. The itching leads to depression and feelings of not being taken seriously by the medical community. In reality, ICP is a very serious pregnancy condition. It is a disease of the liver and results in high percentages of stillborn babies and mothers are at risk too, if the medical community does not treat it as a serious medical condition. Approximately three to four weeks prior to having my son in March 2005, my health during pregnancy began to deteriorate very quickly.

I was a very healthy, active twenty-six year old and this was my first child. Toward the end of February I began to suffer from severe fatigue. I was still working full-time as a forensic scientist, but I could barely stand for any duration of time and was absolutely exhausted. Of course, everyone attributed it to being normal during pregnancy and since this was my first child, I didn’t know anything. Then I began to lose weight, which alerted my doctor to do an ultrasound. Everything looked fine on ultrasound.

I had absolutely no appetite for the last month of my pregnancy and it was actually more of a chore to eat. Approximately two and a half weeks prior to having my son I suffered from severe vomiting and became so dehydrated that I had to be hospitalized and given IV. At that time I was told that I had “the flu”. I recall being released from the hospital during the week on a Wednesday and then waking up that weekend with severe itching on the bottom of my feet. It was really bizarre to me because I had never had any type of itching like this before and there was nothing visibly wrong – no rash, nothing.

I called my mom who is a nurse and told her about my symptoms and she thought I should speak with the on-call physician immediately. So, I called the physician and she asked if I had used any new type of soaps, detergents, anything that I may be allergic to. I couldn’t think of anything that I had done differently. I felt really silly for even calling. She advised that I take Benadryl and that if my symptoms did not go away to call on Monday. The itching of course did not go away but became worse and I was itching everywhere from my scalp to the bottom of my feet.

I went to work on Monday and was discussing it with my co-workers. I recall one of them jokingly mentioned to me that I might have mites from being hospitalized. I felt really weird going to the doctor because there was nothing wrong with me except that I was itching all over the place. Another one of my symptoms was that I had very dark urine. I went to my doctor and told him that I had severe itching. He thought right away that I might have Intrahepatic Cholestasis of Pregnancy. I had never heard of it before nor did it run in my family.

My doctor said that as long as I was induced there shouldn’t be any problems. They would need to check my bile acid level in my blood. He said he would rush the results and that hopefully I would have the results in a week. In the meantime I should continue to take Benadryl. He said he would induce me at 37 (! ) weeks and at this point I was 36 weeks along. Because my husband and I had just moved, I did not have access yet to a computer with internet service, so I couldn’t look the disease up, but I told my mom about it and she told me that her and my dad were going to fly out to be with me.

Since no one was saying much I knew that it had to be serious. That would probably be the longest week of my life. It was an emotional roller coaster. The itching was so severe that I had scabs and scratches all over my body. It was terrible. Thinking about it makes me itch. I also had no appetite, and was depressed. The doctor finally called me the next Monday and told me that I would need to come in to the hospital and be induced because “my levels were way off the charts”. My husband and I rushed to the hospital, where I was induced and on March 1, 2005/

I gave birth to a healthy baby boy. I was told by the physicians that the itching would all go away within a couple of days and I remember it taking about two weeks for the itching to completely go away. Story over? Not so… Approximately three days after I had my son I began to feel really ill. I had severe vomiting. I went to the doctor because I was having right abdominal pain with severe vomiting. I had to go to the emergency room to receive IV because I was so dehydrated. I was then sent home and about two days later I was in severe abdominal pain.

I called the on-call physician of my OBGYN group and told her that there was something wrong so she had me admitted to the hospital where I stayed for approximately one week. I had elevated liver enzymes and an enlarged liver. I saw a gastroenterologist and was tested for liver diseases such as Hepatitis C, which all came back negative! I was finally released from the hospital, but still under the care of the gastroenterologist who continued to test me for various liver/gallbladder diseases. My liver enzymes remained elevated.

I continued to have upset stomach and a loss of appetite. I was on a very restrictive diet because my body could not handle any type of fatty food. I was also seen by liver specialists and after approximately six months I had a liver biopsy, which showed mild fat in the liver. I am rather petite, 5’2”, weighing in at about 90 pounds, so there shouldn’t be fat in my liver. My gastroenterologist thought that I might have also had fatty liver of pregnancy. I saw another liver specialist to get a second opinion and he pretty much said that ICP is not a very serious disease, that my symptoms were mild at this point, and that I probably did not have fatty liver of pregnancy because this is a more serious disease.

This was extremely upsetting to me, because this guy had absolutely no idea what I had been through, how sick I had been, and he had the audacity to tell me that my disease was not serious. To this day, almost two years later, I have had continuous elevation of liver enzymes. I have obviously done a lot of research on ICP. Overall, I think my OBGYN took the appropriate actions, but the length of time to obtain the blood test results was ridiculous considering the severity of the situation.

I also regret that I didn’t speak up about the itching or that my doctors never asked me about it earlier, because I did have earlier symptoms of itching, but it was always considered “a normal part of pregnancy”. I am very blessed to have a healthy boy. I have read numerous stories on the itchymoms.com website about ICP sufferers giving birth to stillborn babies and it breaks my heart.

Patients with ICP need to be monitored vigilantly. Doctors and nurses need to be more aware of this disease to catch the early signs and thereby reduce the number of deaths from this disease. The insensitivity of some of the liver specialists I have seen was disgusting. They do need to understand that this is a more serious disease for both mother and baby.

I strongly believe that any mother who has ICP should receive extra monitoring during pregnancy as well as follow-up care after having the baby. Furthermore, ICP has been linked to other more serious liver diseases and this should send a red flag to any physician (Ropponen et al., Hepatology 2006;43:723-728). My recovery process has been a very long one. It has been much longer than what I was told. After I had my baby, I felt terrible and instead of going to different doctors and being in and out of the hospital they should have just kept me in the hospital because of how ill I was.

I only hope that through my story other women, men, doctors, medical professionals can become educated about this disease. Medical professionals should recommend that women with ICP go to www.itchymoms.com as a support group. A lot of the information on this website is invaluable. I only wish I had known about it when I was pregnant. What every physician needs to know is that each case of ICP is going to be unique and it requires immediate attention and absolute follow-up care because lives are at stake.

Heather Sargent