Looking for help

[codapop]

I am new to this forum and have questions if you can please help. I don't know much about my condition other than that I was diagnosed with PPCM in January after the birth of my fourth child on Dec. 16th. I felt an irregular heartbeat in the hospital and brought it to the attention of the nurse. They did an EKG- normal. I brought it up upon discharge and the doc checked and heard the irregular beats so I then went to my regular doctor about 1 week later. The EKG was then abnormal and so he sent me to a cardiologist. Echo showed the left ventricle was mildly dilated and EF 45%. I think I had about 20,000 PVC's- a lot. I was put on Toprol XL 25mg. THen my regular doctor put upped it to 50mg when he said I still had a lot of PVC's. That is my current dose. My heart seems to beat normall most of the time, I had one episode recently where I felt real tired and checked my pulse and it was doing all kinds of crazy things. I just went to bed and prayed! At my last visit one week ago I had a follow up echo and it was still 45% with no improvement. They also saw what he said might be a hole in the top of the heart that did not close at birth?? and so he is going to do a bubble test in January to see. He said the only problem with that is if I were to get a blood clot it could cause a stroke?- at that time he will do another echo and see where we are- and then see me back every 6 months.

My question is this- what can I do to improve my situation. I am working out- that is okay right? I need to lose weight and am working on that, too. Are my meds okay-any others? Any vitamins or anything? I am also nursing, too. Thank you for any input!

Kari Collins

[mikeyandBellesmommy]

I can give you my regimin I take Vasotec I used to be on coreg which is supposed to be great for us. I also take a multi vitamin and fish oil everyday. They say fish oil is good for the heart I also heard co enzyme Q10 is good as well. :)

I am overweight as well and just started weight watchers if you need a weight loss buddy, LOL!

[JAMESFETT]

Hi Kari. It is comforting to know that your EF is 45 percent, but it is a bit concerning that it has not gotten better--which it could and undoubtedly will do. Your treatment leaves room to consider other medications, since American Heart Association guidelines for heart failure include the use of both ACE-inhibitors and Beta-blockers, in addition to any diuretics needed for fluid excess. You may not have the latter. You are on a good beta-blocker (Toprol XL). The question of a "hole in the heart" needs to be addressed, perhaps it is significant, perhaps not. With an EF of 45 percent, there is less concern for an embolus, a clot of blood breaking off and going to the brain, causing a stroke. That dreaded complication is seen more often with either atrial fibrillation or EF less than 35 percent. Your doctor is astute to bring up the issue. The rhythm things you are noted may need to be looked at more closely, first to make sure you do not have atrial fibrillation, and secondly to know exactly what kind of rhythm changes you are noting. A Holter monitor may or may not be indicated, but your doctor will know. It takes time to heal, and your present course is not unusual. Thoughts and prayers for complete healing.

JD

[SarahsMom]

Hi Kari, (I spell my name the same way - that's weird),

Welcome to the site, you'll find much love and support here. My situation was much different than yours as my EF was MUCH lower. I was at 20% - 25% (they were talking heart transplants etc.,) I was completely healed 6 months later (much to the suprise of my doctors). Anyway, I just wanted to let you know what they told me to do after my diagnosis. I was put on Coreg, Lisiniprol, lasix and potassium - I would ask your doctor to switch you to Coreg (IF you're not seeing any results with Toprol - the cardiologist called Coreg the new miracle drug for heart failure. Both are very good medications - it's worth a try). I'm pregnant again and my cardiologist switched me to Toprol (more studies done on pregnant women). I was also put on a low sodium diet and EXCERSIZE--> I feel was a main contributor to my healing.

Hope the above helps! I look forward to getting to know you better.

Love,
Kari

[codapop]

Thank you for your response. Do you think it is okay to wait until January to have the bubble test done? Also, should I push for a holter monitor before then as well? What about an Ace Inhibitor- is that okay when nursing? It concerns me now, I mean I feel good, no fluid retention that I am aware of, but I just wonder why the tests keep bringing something up? I don't want to wait if something should be done now. Thanks!

Kari Collins

[JAMESFETT]

Kari, only your doctor can answer those questions, and they deserve answers now rather than 4 months from now. Theoretically at least ACE-inhibitors are not used by breast-feeding mothers because of unknown safety for the infant. From a practical standpoint it is not an absolute contraindication. I try to share information about general principles in the treatment of PPCM and what newer investigations are showing. The specifics can only be handled by your own physician who has all the information about you. I think your outlook is very favorable and your doctor is doing a fine job.

JD