Laurie Wood

 Peripartum Cardiomyopathy Support Network

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I am now 38 years old and have 5 year old twins. I was 33 at time of diagnosis. After 6 years of infertility my husband and I decided to try in-vitro. We got pregnant on first try with boy/girl twins and were thrilled. I had severe morning sickness until 16 weeks. At 18 weeks I got a mild case of flu. I recovered only to get the flu again at 22 weeks. By 23 weeks I was very sick. I experienced fevers of 103.5, convulsions, vomiting, fatigue, etc. I was hospitalized on Dec 31, 1999 (my big millennium celebration). On New Years' Day, my ob/gyn said "I had the flu and should go home and rest". I argued otherwise and he eventually said I could stay in the hospital one more day. I tried so hard to get pregnant I was concerned for my babies. Within 24 hours (January 3) I was moved into intermediate intensive care for difficultly breathing. 24 hours after that I was moved to ICU and diagnosed with acute respiratory distress syndrome caused by pneumonia. My pulse oxygen level was 80%. Keeping my oxygen level up was essential for the babies development. I was placed on a c-pap breathing machine and was given Ativan to help keep me calm. I was given lasix to clear my lungs. The Ativan had an adverse effect and made me confused, disorientated and agitated. The doctors debated over placing me on a ventilator. Eventually they didn't because the doctors were unsure of what the meds for a vent would do to the babies. The lasix started contractions, the concern of a premature delivery of micro-preemies was real. I managed to get better. I spent 1-week in ICU, and 2 weeks in the o/b high-risk ward recovering. I lost 20 lbs that trip to the hospital. From 26 weeks on (January 20, 2000 until March 31, 2000) I was nauseas, ran low grade fevers, had nights sweats and lost 20 more additional lbs. I was under constant watch of an infectious disease specialist, pulmonary specialist, high-risk OB/GYN, and my regulator OB/GYN. My blood work showed high SED rates along with other imbalances (platelet counts low, low hemoglobin etc.) The standard conversation at every doctor's appointment was, "hang in there, twin pregnancies are difficult". I developed numbness in my hands and was told "carpal tunnel syndrome". I fainted and was brought to the hospital in an ambulance and was told, "dehydration". Numbness and swelling developed in my feet on March 24. I had severe pain in my hands and feet. Doctors performed a vascular scan and said, "no bloodclots, just pregnancy swelling". They gave me darvocet and ambien. I took Tylenol everyday to control my fevers. On March 27, I begged to be induced. Doctors agreed my weight loss wasn't helping the babies and they should check lung development and proceed with induction if it was safe. The amnio showed strong lung development so I was induced on March 31. I delivered vaginally boy/girls twins who were healthy. God was on my side! They weighed 5.2 oz and 4.14 oz. By April 2, I could not walk. I had severe nerve pain in my hands, legs and feet. A neurologist was called in along as well as psychiatrist! They performed MRIs, CAT scans, EMGs, nerve conduction studies, spinal tap, x-rays, etc. I was diagnosed with mononeritis multiplex syndrome. A very fancy word for peripheral nerve damage. The psychiatrist wanted to give me Prozac, which I refused. The neurologist prescribed 40 mg of predisone and discharged me. I was extremely fatigued, threw up constantly, couldn't walk up stairs, couldn't even hold my babies. I lasted 3 days until I collapsed at home. My husband called 911 and I was brought back to the hospital. Fortunately my mother arrived to help out with the babies. Doctors informed my husband I was in end-stage liver failure brought on by congestive heart failure. My ejection fractions was 5-10% my heart was double in size. My kidneys were overworked and started to fail. The news was not good. I was transferred to a teaching hospital for they were looking into a double transplant option to keep me alive. We have no family in the area and my beautiful healthy babies were at home with my mother. My mother wanted to be with my husband and me. My husband was desperate for help and called the ob/gyn's office for a nurse referral. He left our babies with a complete stranger! The chief cardiologist had seen PPCM before and worked hard to get my heart going. My liver had me in grave condition and it was decided to risk a liver biopsy as part of transplant preparation. The chance of bleeding out was huge but my family decided it was best to keep all options open. I made it through the biopsy and my heart kept beating and got stronger. Gradually my liver started to rally. The nerve problems were finally diagnosed as a severe autoimmune problem called systemic vasculitis which is inflammation of the blood vessels. My autoimmune disease has left me permanently disabled in my left hand and both feet. I spent 2 weeks in ICU, 2 weeks in cardiac care and 2 weeks in rehab. I spent 1.5 years doing physical and occupational therapy to regain some use of my hand and to regain strength and balance in my legs/feet. My insurance finally stopped paying for visits and I've accepted that fact I will never be the same. Currently I'm doing ok. I have an enlarged LV and my ejection fraction is 45%. I have episodes of bradycardia were my heart rate is about 42-46 BPM. This makes me dizzy and tired. I recently visted with my cardiologist and he suggested a pacemaker. My autoimmune disease flared about 1.5 years ago and the additional meds caused some temporary liver problems. My autoimmune disease is in remission at moment. I thank my lucky stars everyday I'm still with my family.