Hey all,

I posted this on the cardiac board also. However, my cardiomyopathy was cause by pregnancy and if any of you l&D or pp nurses have any info I would appreciate it.

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. But who is offering 8 hour shifts anymore?! 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

((((((((Bessie))))))))) I'm so sorry to hear about your health. I don't have any additional information for you, but I just wanted you to know that I'll keep you in my prayers in hopes something positive will be done for you. Keep us posted. :kiss

This is a difficult diagnosis and my prayers are with you...Is anyone talking about getting you on a list for a heart transplant if needed?

Hey there! I am a new grad but working in CCU so I do have some, everyday growing knowledge of cardiomyopathy. First of all, although an EF of 40% sounds very scary, there are many people that live at that state for years....we see folks w/ EF's of 10% everyday!!!!! I would try not to look up too many statistics. It is only going to make you upset and they seem to be wrong to me anyhow.

By the way, your cardiologist is correct that you may be able to return to work. I would take it real easy at first though which is why he is suggesting 8 hr shifts. Do not push it at first though. One shift a week w/ three children at home is a ton of stress already.

I am curious as to what meds he put you on? Also the onset of these issues? Is it at all possible that these were preexisting conditions (not the DVT or PE) but the cardiomyopathy but was just exacerbated by the pregnancy? Also, I def think you ought to get a second opinion esp since you do not seem very happy w/ your management at this point in time. I wish you the best of luck. My prayers are with you...and congratulations on your new baby!!!

Dear Bessie,

My heart goes out to you. I can only imagine how frightening your illness is, especially with 3 young children at home. I am an OB nurse, and can offer you absolutely no information about cardiomyopathy, but would like to suggest that you get a second opinion from a major referral center or teaching hospital.

A co-worker of mine experienced something very similar when her 30 year-old husband became ill and disabled with cardiomyopathy believed to have been caused by a viral infection. He was treated at Hahnemann in Philadelphia and has done remarkably well on a medical regimen, returning to work and most of his usual activities. He had been evaluated by the transplant program, but thankfully, never became ill enough to be placed on the list.

So, if you haven't already done so, please look up some programs in your area. I'm sure the posters here could recommend some good ones. God speed.

(((bessie))) just a hug of support. I am NO cardio expert here. sorry.

Thanks to everyone for your responses! I appreciate all of your support. The day I wrote my post was after my 6 month check up post diagnosis and the chances were about 50% that I would have a full and complete recovery. I didn't expect the reverse to happen. So I was a bit in shock and disbelief. But thank God for nursing school because I am sure putting my research skills to good use!

new ccu rn: Thanks for your info. I have found an awesome website called Jon's place were a lot of things have been put into perspective. Such as people who ended up in the unit at first diagnosis with ef's of 5%! OMG! It is probably more likely that I did not have this as a preexisting condition. Peripartum cardiomyopathy is caused by pregnancy in a women without previous heart disease. It can happen during pregnacy up to 6 months post partum. The cause is unknown. I guess I still have a little disbelief because I am basically asymptomatic currently. But at diagnosis I was in CHF. But I don't want to make myself symptomatic. Currently I am on Altace 5mg qd, coreg 3.125mg bid. I have added a multivitamin, tums (for calcium) and coenzyme q10. I also have a thyroid disorder which I found out about 1 month prior to the pregnancy and I take PTU 300mg bid. This pregnancy was a DOOZY. One good thing comes out of this....I WILL NOT be having any more babies! :) I love my kids but I probably would have gone crazy when the youngest got to be 1 1/2 and said "honey let's have just one more." Foolish me. :)Now with this condition that is definately contraindicated.

I live in the Atlanta area. So if anyone knows any good heart failure specialist I would be interested.

Thanks,

Bessie

mother/baby rn: transplant list has not been discussed as of yet. My cardio doc says that I am what he considers mild heart failure. So now the goal is to keep it that way! We will have to be more aggressive with my meds and increase there doses to target levels and hope for the best.

Jolie: I am glad your coworkers husband is recovering and doing well. I think I am doing well because I don't presently feel symptoms. On occasion I have shortness of breath but I kept thinking it was because I was out of shape! I am not overweight but I don't like to excercise. However, I will be taking up walking. :)

Bless your heart (literally). I am praying for you.

Lisa

I am so happy that your prognosis is good! I have seen several patients with more severe cases, thus my question! I am happy that your prognosis is such a good one! Is there a possibility that you might consider office nursing or would you miss hands on patients?

Hey all,

Thanks for your continued support!

Mother/baby rn: I have considered office nursing but I don't think I have enough experience under my belt. :) Plus I wanted to work in the hospital setting for a while. Right now I am just being stubborn and I don't want any restrictions! :) I am going to go through cardiac rehab (excersise) and when I pass I will be allowed to work 12 hour shifts. I want to decide when I don't want to work 12 hr shifts. I don't want anyone to decide for me. :) I am a pain in my docs a@#! I feel sorry for him because I am not a good patient. (translates into I question everything!)

Bessie

Bessie, you keep on questioning...you are right to. I continue in my support of you here. Pls update us when you can. Best wishes to you.