I was diagnosed with dilated cardiomyopathy in November, 1997. Three of our kids are married: David - 26, Susie - 24 and Michael - 19. Three are still at home: Anna - 15, Paul - 8 and Joshua - 6. We are going to be grandparents in October (Susie) and again in February (Michael). I am thrilled about that! I work full time as an Administrative Assistant in an AIDS lab. It is interesting but can be very stressful when grants are due.
I ignored a lot of the symptoms of my DCM for a few months, even though I felt pretty bad at the time. I just did not have time to deal with it - silly me! I had been on a liquid diet from February of 1997 until June of 1997, and also took phentermine to help me lose weight. I lost over 40 pounds but started to have chest pains when I was walking, 4 miles in an hour and 10 minutes, 4 times a week. In addition to the chest pains, I was short of breath and very dizzy. I finally went to the doctor and saw someone I did not know. That was the only way I could get an appointment right away. He listened to my heart and said that he did not hear anything (I was having irregular heartbeats at that point) but he did an EKG because I pushed it. After the EKG showed some PVCs, he decided to be on the safe side and requested a 24 hour Holter monitor test. Two weeks later, I had the Holter monitor done and never heard anything back from either the Cardiology Department or my doctor's office. I thought at that point, that it was in my head. I had also stopped all my diet medication and the liquid diet in June, and I was not feeling as bad.
A month later (late August), I got this frantic phone call from my doctor's office saying they wanted me to come in right away. For some reason, the results of the Holter monitor were put into a file and they had just found them. They wanted me to go to the cardiologist for an echo and stress test. I "flunked" both of them. In November of 1997, I was given an angiogram to see if I had any blockages that could be causing my cardiomyopathy. They found nothing, but while I was on the table, my heart started beating irregularly so they got a taste of what I was talking about. The cardiologist has never said anything about CHF. I think he did not want a hysterical woman on his hands. Anyway, he put me on 10mg of Benazepril and told me to lose weight. He gave me no restrictions on salt or anything else. He just told me not to take decongestants (I have allergies too).
I have been back to the cardiologist twice since then. I had an echo done in February, which showed a slight increase in the left side of my heart. He doubled my Benazepril to 20mg once a day and he told me to come back in August of 1999. I have been seeing my primary care physician, who has been much more aggressive in my treatment. He has gotten my Benazepril up to 40mg twice a day to bring my blood pressure down. Lately, I have had more trouble with swelling, which seems to come and go, and is worse when I have irregular heartbeats. I am tired a lot. I used to be able to come home from work on Friday night and clean house until 11PM. I can't anymore; No energy! I also don't know what my EF is. When I see the cardiologist in August, I will get copies of the reports and see what it is.
I need to keep working as long as possible since I carry the health insurance for my family. My 6 year old has eye problems and sees an ophthalmologist 4 to 6 times a year. He also has ADHD and sees a neurologist for that problem. My husband has diabetes and has a hard time keeping it under control. I like my job but wish I could cut back on my hours to 35 a week. I have told people and my boss where to get off, and have cut the stress by quite a bit over the past several months. I told them if I don't get the work from them in enough time to get it done, I am not going to stress out about it. It is their problem! I wish everyone the best that life has to offer and lots of prayers. I firmly believe in the power of prayer and the belief that Jesus can heal anything and that miracles can and do happen. I am not as sick as some of you and I pray each day for all who visit this Web site!
July 5, 2000 - My husband Jack and I became grandparents for the first time in October of 1999 (Shea Elizabeth) and again at the end of December (Kyleigh Megan)! They are both a joy and make me push myself to live a long life to watch them grow up; Grandparenting is so much fun!
I am currently taking 40mg lotensin twice a day, Zantac twice a day for my tummy, 600mg calcium twice a day, a multivitamin daily, Allegra twice a day, and Medrin as needed for migraines. My primary care doctor - who has been much more aggressive in my DMC/CHF treatment than my cardiologist - wants to add a diuretic if my blood pressure is still up in September. It has been about 128/84. He would like my blood pressure to be 110/65. I am going to also ask about adding Coreg when I go back in September.
I made a very big decision last fall. In October of 1998, my twin sister came to visit and we discussed weight loss surgery. Since she had no health problems, she said she would go first, but due to delays with her insurance company and a badly broken arm, I gave up on her and saw my primary care physician and we discussed the surgery in October of 1999. I was at 270lbs and not able to get my weight down; I was gaining each year. I was feeling very, very tired and was slowing down a lot. My primary physician thought it was something to check out with a surgeon. I saw the surgeon the beginning of November and he felt he could help me but it would have to be approved by my cardiologist.
The cardiologist scheduled me for a MUGA. I don't want to do that test again - Yuck! I passed with an EF of 43%. My EF had dropped from 63% in November of 1997. I finished up all the testing and was scheduled for surgery on December 9, 1998. I had a few complications. They called the cardiologist in at one point because of irregular heart beats. I still get these even now. I also got pneumonia very badly and was hospitalized for an additional week. My surgeon was very careful about following me up and I spent 6 days in intensive care and semi-intensive care so that I would be monitored all the time. It took me a long time to recover from the pneumonia and surgery: about 3 months.
All in all, even with the complications, this is the best thing I have done for myself! Six months later, I have lost more than 73 pounds and am feeling a lot better! I saw the cardiologist in April and he said my pulse had dropped from the mid 90s to 70. He is very pleased with my progress. I am walking a lot: 3 to 6 miles a day! I still have days when I am very tired but I force myself to walk anyway. Of course, I still have DCM/CHF but the symptoms are not as bad as they were before I lost weight. The swelling has gone down a lot in my ankles and legs, and my heart does not feel like it is coming out of my chest all the time!
This is not an answer for everyone who has a weight problem. It is a very difficult surgery and very, very hard on your body. In November or December, they will do another echo to see if it has helped reduce the size of my left ventricle. It is doubtful but I am a Christian and believe in miracles so we will see what happens in November. I firmly believe that my weight loss will extend my life by years. I felt that I was not going to live very long at the rate I was going in the fall. I feel so much better now. I am not perfect by any means but I am much better than I was before I lost the weight. I cannot stress the importance of losing excess weight enough. I still have at least 50lbs to go and it gets harder as I go along, but I am determined to lose that 50lbs.
I read the posts every day although I don't post very often. I pray for each of you every day and I thank God for this site! I had no idea what was going on with me when I was first diagnosed but with the help of Jon and The Manual, I am much more informed and can make decisions regarding my situation with a lot more intelligence!
Betty -- July 15, 1999
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. No one here is a doctor. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. This web site and all its pages copyright © 1997, 1998, 1999, 2000, 2001, 2002 Jon C.