My daughter is 12 yrs old. She has congenital fiber type disproportion myopathy. dec 4th she was put in the hospital , she has dialated cardiomyopathy 2nd congestive heart faluire, her ejection fraction was 8% , 3 months later its 19%. Along with her 4 meds she has to take, she now also has to take a baby asprin daily. Is she more prone to have blood clots in her heart due to cadriomyopathy? We are still trying to figure out if the cftdm is the cause of the cardiomyopathy , everything we have read up on says it most likely is. Any input would be great.
thank you , jaime
Hello Jamie and welcome to ou site. As my own daughter just got discharged from the hospital tonight and the few hours it took to drive home, I'm alittle car sick; I will answer all of your questions on here tomorrow. My daughter also suffers from CHF, secondary to Coronary Artery Disease which is a result of her transplant.
Helo again Jamie. I am going to try and answer some of your questions on here. Systolic cardiomyopathy is the form of cardiomyopathy your daughter is suffering from. In this form of heart disease, the walls of the heart are too thin and so the blood never really leaves the chambers; the blood just kind of sloshes around which can cause blood clots to develop, if they leave the heart chambers and spread through the body they can end up in the lungs or the brain. Obviously, that isn't good so she has been placed on ASA to prevent her blood from clotting too much. So the answer to your question is simply: yes. I am ot sure what you mean when you ask if the "cftdm is the cause for the cardiomyopathy". can you explain what the cftdm is? If you are referring to the disaray of muscle fibers than that is what takes place naturally in the main forms of cardiomyopathy: Dilated (where the walls are too thin) Hypertrophic (where the walls are too thick) which is where you REALLY see this form of disaray, as well as in the Restrictive forms of cardiomyopathy. Most Dilated forms of cardiomyopathy are a direct result of a virus which attacks the heart muscle, unlike the hypertrophic forms of the disease where genetics plays a much larger role in the disease. Sometimes, rarely, is sporadic. An EF% of 8 is very low, the norm is between 50 and 70%. The fact that her EF% are now up to 19% sounds like she is getting benefit from the drugs she is now taking. Has she been evaluated by a transplant team? She should be seen by a good pediatric cardiologist hopefully at a good University Hospital where there is a children's hospital associated with it. I hope your daughter continues to improve with time. It can be so hard on children and teens, especially, who suffer from the serious forms of heart disease known as the cardiomyopathies. Please feel free to come back here on the forums to vent your frustrations and fears. A lot of us have walked in shoes similar to the ones you wear. Take care, Hugs.
Hi ! Thank for commenting back. Like i said my baby is 12yrs old , along with whats going on now .. she also has cp and is developmentally delayed, shes pretty much non-verbal and cognitively about 3. She deffinitely has dilated cardiomyopathy. The congenital fiber type disporpotion is a type of musle disease that she was born with it. It is very rare and in even rarer cases it weekins the heart musle causing dilated cardiomyopathy. I understand about 99% of everything that is going on with her, i just was uninformed about blood clots.:). Anyway i guess my next question would be about transplants, what would qualify or disqualify someone, what are the risks, how is recovery???? We are going to st. pete on the 22nd to find out more of what the future holds for us.. in the mean time its nice to hear from people that have gone through this.
Thank you lotts
Hello again, Jaime. Unfortunately you are in a very difficult position with your baby having CP. One of the main reasons for a person to have a transplant is so their quality of life improves; it is NOT there to extend life as so many think. You are still classified as being terminally ill even with a transplant. I am not sure how the transplant team will deal with your daughter's evaluation process; no one ever knows, but you must prepare yourself for the news they will deliver either way. Transplantation is NOT a cure for the heart disease your daughter suffers from; it is not a cure for any of the cardiomyopathies;it only extends (hopefully) life to give families more time with their sick loved one. There are certainly risks involved with transplantation; some people can live for many years, some never leave the hospital alive. The drug schedule can be overwhelming; miss 2 doses of the antirejection drugs and it's given IV form. Biopsies are done often, for many it is every six months for years. Some luckier patients, they can manage a biopsy once a year. Because you are on antirejection drugs, your immune system is lowered and a simple cold can land you right back in the hospital, especially if you haven't had your new heart for very long. Cancers can crop up as well. A few years after my daughter received her new heart, she came down with a cold, ended up in the hospital for 10 days having every test in the book, including a bone marrow biopsy because they thought she had cancer! ALL patients develop coronary artery disease by the time they have had their new hearts for about 5 years; how fast it develops from that point on, depends on the individual. Once coronary artery disease sets in, things are very bad for the patient and they basically need to go back onto the transplant list and hope another heart arrives for them in time. Sometimes they will be turned down for retransplant and at that point have about a year or two to live. Your daughter has given you a strength that few mothers will ever know; hold onto that thought. I send you my best wishes and remind you that this forum is for your benefit. Let us know how things are going for you. (Where is St. Pete?)
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