Dilated Cardiomyopathy at 33yo

  1. 0
    Hey all,
    I have been diagnosed with dilated cardiomyopathy following pregnancy. I am 33yo with 3 children. I just graduated from nursing school last May and was able to practice nursing for 6 months. I am looking for any support or info that anyone can provide. I just had my 6 month echo and my heart function has declined since first diagnosis. My EF is around 40% according to my echo. My entire heart is enlarged. My tricuspid valve has a moderate to severe "leak" and my mitral valve has a mild "leak." Leak is the term my cardio doc uses. I imagine he means insufficiency. I also have some pulmonary hypertension according to my echo and he is sending me to a pulmonologist. At the time of diagnoses I had a Left calf DVT and suspected PE with the vq scan being inconclusive of the PE but my d dimer was over 2000.

    I am asymptomatic 90% of the time. However, I have read everything that I can get my hands on and prognosis says 20-50% of patients die within 1-5 years and another 25% die within 10 years. My cardio doc says that I have mild heart failure and makes me feel like this isn't a big deal. However it feels like a way big deal to me. I thought I was going to be able to return to work. He says that I can work 8 hour shifts and he would like me to start with 3. However before my 6 month echo, he kept telling me that I could return to work whenever I wanted with no restrictions. I am feeling a little angry, confused and sad.
    Thats all for now,
    Bessie
  2. Get the Hottest Nursing Topics Straight to Your Inbox!

  3. 4,585 Views
    Find Similar Topics
  4. 9 Comments so far...

  5. 0
    Hi Bessie -

    I wish I was able to help you, but I'm afraid that's all over my head. I just thought I'd bounce this to the top of the list to see if somebody smarter than I am could see it.

    It seems like a big deal to me, too. I'll be praying for you, and sending strengthening vibes.

    Love

    Dennie
  6. 0
    Hi Dennie,
    Thanks for your prayers! And your response.
    Bessie
  7. 0
    Bessie, I just read your post. What a lot to digest, and unfortunately it seems that some info is contradictory and confusing. Any updates? Have you done any more research? Any second opinions? My sincere wishes for improvement - all the best, -- Diana
  8. 0
    Did a web search. I'm sure there is a lot more out there but I did find this:
    PROGNOSIS: POTENTIAL FOR RECOVERY
    While peripartum cardiomyopathy shares many features of other forms of non-ischemic dilated cardiomyopathy, an important distinction is that women with this disorder have a much higher rate of spontaneous recovery of left ventricular function. As many as 50% of women presenting with this disorder will normalize their ejection fraction during subsequent follow-up, (12) most within the first six months. This higher rate of spontaneous recovery compared to other forms of IDCM likely reflects differences in timing, not in pathogenesis. Patients presenting with idiopathic dilated cardiomyopathy may do so months to years after the initial myocardial injury, long after the time for spontaneous recovery has past. In contrast, for women presenting with peripartum cardiomyopathy, the timing of the initiating event is clear. As women present in the acute phase of the illness, there is a greater chance of spontaneous recovery once the hemodynamic or "inflammatory" stress of pregnancy resolves.

    Prognosis is directly correlated to recovery of left ventricular function. For those women whose LVEF normalizes during follow-up their prognosis is excellent as without the stimulus of a subsequent pregnancy the chance of development of heart failure or future LV dysfunction is minimal. For those women whose left ventricular function does not recover, prognosis remains guarded and mortality rates as high as 10-50% in some series have been reported (13,14).

    Few clinical clues exist which help predict which women will recover their LV function. Our experience suggests that LV size is an important predictor, as women presenting without significant LV dilatation appeared to have a greater chance of spontaneous recovery during follow-up. In contrast, women with marked LV dilatation at presentation appeared to have a greater likelihood of developing into a chronic cardiomyopathy. Initial NYHA class or hemodynamics do not seem to predict the likelihood of subsequent recovery. Women who remain severely functionally limited or inotrope dependent despite therapy should be evaluated for possible cardiac transplantation, however, we attempt to delay transplantation if possible for the first six months postpartum in the hopes that some recovery of LV function will allow transplant to be deferred.

    MEDICAL MANAGEMENT
    The medical management of peripartum cardiomyopathy is similar to other forms of heart failure due to systolic dysfunction with the exception that in women presenting during pregnancy, potential effects to the fetus must be considered (15,16). Therapy with angiotensin converting enzyme inhibitor are the core of therapy of women postpartum, but are contraindicated during pregnancy itself due to potential teratogenic effects ACE inhibitor use during pregnancy, particularly in the second and third trimester, has been associated with increased fetal loss and a fetopathy characterized by fetal hypotension, oligohydramnios-anuria and renal tubular dysplasia. Angiotensin receptor antagonist (ARB's) while a reasonable alternative to ACE inhibitor therapies postpartum, should be similarly avoided during pregnancy due to potential adverse effects.

    For women presenting during pregnancy with symptoms of congestion due to cardiomyopathy, a loop diuretic can be utilized generally at the lowest effective dose. A small daily dose of digoxin can be added. In terms of afterload reduction, hydralazine and nitrates can be used as an alternative. Despite the growing evidence of the effectiveness of beta receptor antagonist (beta blockers) as heart failure therapy, less is known about their effectiveness for PPCM and their use must be individualized. In terms of safety, there is a long history of the use of beta blocker therapy in treating pregnant women with hypertension without any known adverse effects to the developing fetus, and for patients on these agents prior to diagnosis, they can be safely continued.

    For patients presenting postpartum, ACE inhibitor therapy should be initiated. In those patients not tolerating ACE inhibitors due to cough, ARB's are an acceptable alternative. Symptoms of congestion should be treated with a loop diuretic and digoxin. For patients who remain symptomatic despite ACE inhibitor and diuretic therapy, beta blocker therapy can be initiated. These should be used with caution in the occasional acute patient who presents with significant systolic dysfunction without ventricular enlargement. These patients with normal LV chamber size have a markedly reduced stroke volume, and occasionally the reductions in heart rate associated with beta blocker therapy are poorly tolerated.

    Like other forms of heart failure, this syndrome can lead to thrombotic and embolic complications. Patients with evidence of a systemic embolus, or with severe left ventricular dysfunction and documented mural thrombus, anticoagulation should be considered. Warfarin therapy is contraindicated during pregnancy and for women requiring anticoagulation, heparin must be utilized. Postpartum, in patients with either a clinical embolic event or with ultrasound evident of thrombus formation, Warfarin therapy should be utilized for a period of six months. The need for chronic anticoagulation should then be reassessed depending on the state of LV recovery.

    As in other forms of non-ischemic dilated cardiomyopathy, ventricular arrhythmias can be an important clinical issue. Patients presenting with sudden death or ventricular tachycardia with hemodynamic compromise, strong consideration of an ICD is warranted due to the potential for a fatal recurrence. For patients presenting with symptomatic ventricular tachyarrhythmia which are hemodynamically well tolerated, management can be tempered somewhat by the potential transient nature of the myopathy and amiodarone therapy at 200 to 400 mg po qd is an alternative. If left ventricular function recovers, the risk of serious arrhythmic event is markedly diminished and amiodarone therapy can be discontinued. For patients with asymptomatic non-sustained ventricular tachyarrhythmia we would not initiate amiodarone therapy, but would focus on correction of metabolic abnormalities and consider the addition of a beta receptor antagonist if not already being utilized.

    ACTIVITY AND FOLLOW-UP
    Although patients are encouraged to remain as active as their functional status allows, aerobic activities and heavy lifting are discouraged for at least the first six months postpartum while assessing the degree of left ventricular recovery. Given the metabolic demands of lactation, breast feeding is strongly discouraged in more symptomatically limited patients. As pharmacologic therapy to the patient can be passed on to the child in breast milk, we also discourage breast feeding in more functional patients, though this could be considered with careful monitoring of the child.

    In terms of the reassessment of LV function, the echocardiogram should be repeated at 6 months post delivery; for those patients with persistent cardiomyopathy beta blockers should be added at this point if not already on therapy.
  9. 0
    Above from Web-MD from the Cleveland Clinic (paper presented). -- D
  10. 0
    Hey Dianah,
    Thanks for getting that article! I really appreciate your support! I have found out Ton's of information as well. There is a great website ( http://www.jonsplace.org/CHFjonsplace.htm) where I have found tremendous support and information. When I first posted life seemed bleak and limited. However I have since learned that I am not as bad off as I thought. I got caught believing that in 6 months this was all going to go away and my life would return to "normal." 50% of the people return to normal heart function within this time frame. When that didn't happen I was truly upset and angry. Well, I will just get to my new normal. I call it normal with a twist I am still a little in disbelief because I look fine and feel fine 90% of the time. Right now I am going to go into cardiac rehab which is a excersise program. If after 3 months I am doing well my md says that I can return to 12 hour shifts. He recommends 8 hours, but the unit I want to work doesn't offer 8's anymore. ;0 Plus I don't like people to tell me what I can't do. I think I am an awful patient! :roll
    Thanks,
    Bessie
    Last edit by Bessie on Sep 28, '02
  11. 0
    Thank goodness for such "awful" patients!! They are the ones who "beat the odds!" My mom, after a lifetime of heavy smoking and drinking, was dx'd two years ago with cor pulmonale and diabetes. Has quit smoking, watches her diet (does slip, as we all do, but faithfully monitors her every intake and Accuchecks - action and reaction!), doesn't use the home O2 during the day, only her machine at nite (stays in on VERY hot or smoke-filled sky days, limits exposure to masses of people, etc.). She recently called me to report she told her MD she'd made a liar out of him. "How so?" he asked. "Well, two years ago you told me I had two years to live, and here I still am!" she replied. He laughed and told her to keep on making a liar out of him!! So Bessie, KEEP ON!! Good for you! I too was encouraged by the article(s), that SOME point, things seem to reverse or improve dramatically (another medical unknown: Why does it happen that way??????). Anyway, thanks for the check-in (even tho I responded late and all) and best to you and yours! --D
  12. 0
    Did you try a cardiologist that specializes in cardiomyopathy and pulmonary hypertension. There are some around at the bigger hospitals. A cardiologist may be more helpful with the pulmonary hypertension than a pulmonary doc.
  13. 1
    Bessie,

    I am not sure about this site and want to let you know that first, I am not a nurse. I am just a survivor of peripartum cardiomyopathy. I just want to let you know that I was also 33 years old when I was diagnosed with PPCM and at the time my heart was very enlarged and my ejection fraction was under 20 percent. I am now 39 and my heart size is normal and my ejection fraction is 50%. I tell you this because I truly believe there is hope for you in your situation. I will tell you what helped me besides the medicine: lisinopril and coreg, and that was rest. I slept a lot. I read somewhere that heart problems in women directly correlate to lack of sleep and I completely believe it now. I believe that the more rest you get the better chance your heart has of repairing itself since your body is able to really work on repairing itself during sleep. I know that you have three children and that sleep is probably not easy for you to find, but whatever you do, try to find some time to sleep. I had all odds against me when I was diagnosed and was told that transplant may be the only option. If I could get better, I know that you can. Just keep having faith that you will get better and take the medicines. Avoid stress and sleep as often as you can.

    Sincerely,
    Amanda
    lkwashington likes this.


Top