I have lived in and around Chicago all my life. I love this area but not the winters. My parents and sisters live in the city. My husband's family is mostly in the Bay City area of Michigan. We are Christians and I feel close to God but do not belong to a church at this time. I am a Pisces. My side of the family is Lithuanian.
My lifestyle in the last 15 years has progressed from engineering school geek to yuppie to typical suburbanite. However, I miss living in the very active part of Chicago and sometimes I get attacks of "suburbaphobia" when I feel like I just see too many parking lots and strip malls. My husband and I share the need to take nice vacations every year. We have been to Jamaica, Hawaii, the French Riviera, Key West, southern California, San Francisco, Yosemite and two trips to Orlando. I like beaches and historical sites or theme parks that we enjoyed with my older son.
We have an au pair to help care for the kids. We had already been doing this for a couple years before I was diagnosed, due our work hours and business travel. The au pairs have provided much loving devotion to the boys and we
will continue this as long as possible, despite our reduced income. We built a new house in the summer of 1996, so I would be closer to my job and to get more house for our payment. Our subdivision has become quite attractive. Our lack of interior decorating is a little embarrassing. Maybe I can develop some taste, with all this free time I now have. <g>
Up until the day before my second son's birth, I worked as an environmental engineer for a chemical company. I had worked as a chemical and environmental engineer for 18 years. I worked in a corporate headquarters and traveled to other sites to inspect plants, meet with government agencies and attend professional conferences. I was a hard worker, but not a workaholic.
I had PVC's for years but no other complaints beyond allergies. Then, from 1993 to 1997, I went through a long process of doctor changes and tests before diagnosed with endometriosis. I had laser surgery for that and went on hormones to induce menopause for 8 months. I did fertility drugs for 8 months, had a very sick pregnancy and had a second son. I developed CHF. I feel cursed.
After my second son was born, I never returned to pre-pregnancy health. Immediately after delivery, my heart rate went wacky. I was visited the next day by my cardiologist, who had previously treated me for PVC's. The EKG
showed arrythmia but he told me it was similar to my pre-pregnancy problems.
Once home, I lost a lot of weight and the swelling was down but the fatigue was overwhelming. Then I developed a cough and kept hearing crackling noises in my chest. My internist treated me as if I had a virus. Nothing worked and I deteriorated until I could not lie down or climb a step. Neither my internist, OB or cardiologist detected CM for the first 7 weeks. Then on my last visit to the internist, it was obvious I was in serious trouble. A chest x-ray showed an enlarged heart. I went to the cardiologist for an echo and was immediately taken to the hospital.
I was told I had severe left ventricular dysfunction and CHF due to CM. I was told my EF was 18-20%. This was no foreign idea to me. A good friend of mine had been diagnosed with CM not long ago and I knew all about the prognosis, statistics and transplant option. I was knocked flat, emotionally. I thought I would drown in sorrow over my kids' future.
The first couple of months were extremely difficult. Although I progessed well in losing congestion, the weakness and shortness of breath kept me constantly thinking of death. Of course, I never returned to work. It took several
months for my coworkers to understand what had happened. I stayed on increasing doses of Capoten and other meds. After the wicked summer months, I began to feel better. I was no longer in bed all day, I got on an antidepressant, I switched doctors and I sought help from counselors associated with the heart failure team.
My last cath and echo showed an EF of approximately 35-38%. I am not feeling fully functional. I am collecting Social Security Disability now and also from my employer. I cannot imagine working yet but it may be therapeutic someday.
Keeping up with my kids' daily development, swapping cute kid stories, reading prize winning fiction where none of the characters are stunningly beautiful, reading humorous books like Dave Barry's, going to Chicago attractions, including the small theaters and blues clubs up north
9/29/99 - My EF is now approximately 45% and I am much more active. I have dropped all heart meds except Zestril. I have been released to return to work part-time but have not found a job yet.
7/15/2000 - As of April, 2000, my EF is 55-60% and my Vo2max is 20. I have been working part-time for 8 months in addition to a lot of volunteer work. I expect to be off SSD soon. My part-time job is an official "work trial" in SSD terminology. My sons are now 9 and 3 years old. I still have live-in child care and probably will for another 2 years. I feel like I cannot put a dollar value on the benefit I get from extra rest with the child care help so I try not to think about the cost! I feel lucky every day that I can now do more than sit and watch. I am still happy with the doctors, nurses and counselors I see at Rush Hospital here in Chicago.
Madelyn, January 13, 1998
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