just diagnosed

[blessedbutscared]

Thank you ladies for the support! I am so glad that my sister found this website I was still in the hospital when my sister told me about it. I honestly couldn't wait to get home and check it out. It helped knowing that I wasn't going to be alone through the whole process. And I'm already feeling more hopeful. The odds the hospital gave me were a little depressing.

I'm from Valley Stream and was at a local hospital for the preterm labor and delivery. I was visiting my parents when I went to North Shore Manhasset and got diagnosed there. Thankfully my mother is a worry-wart and wonldn't let me go back to the hospitals near me. I'm new to this area of the Island (got married 2/21/09) and didn't really know the quality difference in the hospitals.

[JAMESFETT]

How interesting to learn about more PPCM mothers from Long Island, where the PCN (Peripartum Cardiomyopathy Network) has excellent heart failure and cardiomyopathy collaborators (Columbia Presbyterian and Stony Brook Heart Center). Your cardiologists are undoubtedly familiar with those resources.

JD

[blessedbutscared]

Just got back from cardio appointment. Turns out echo showed lvef 20-30% so he wants me to take baby aspirin. BP is now about 100/65. He's up'ed the coreg up to 12.5 2x ad day and switched me to benicar 10mg once a day. I'm also supposed to take lasix 2x a week now.
He also wants me not to do anything more then small amounts of housework. The hospital dr. had said I could walk as much as tolerated, but this dr. doesn't want anything. He doesn't want me really leaving the house. This was a huge shock to me since I am an athlete.
I don't know I just feel like it was a step back today. I was definatly more hopeful going into the appointment then I am now.

[JAMESFETT]

How do you feel now? What symptoms do you have? Has your weight been stable? Is the LVEF you report today (20 - 30 %) from a new echo today, or is that from the one at diagnosis? If you are feeling quite well, it is possible that your LVEF has jumped up (as often happens) from the time of the echo at first diagnosis, even though that was not so very long ago. If your LVEF has jumped up over 30 %, there are specific measures that don't need to be taken, as compared with LVEF under 30 %. Please feel free to work with your cardiologist and PPCM consultants available:

Hal Skopicki, MD, PhD, FACC
Heart Failure and Cardiomyopathy Center
Stony Brook Heart Center
Stony Brook, NY
Tel 631-444-1069
Email: hal.skopicki@stonybrook.edu

You and/or your cardiologist should also feel free to call me at 360-438-5270 or send e-mail to address shown below.

JD

[SusanD]

Originally Posted by blessedbutscared

Just got back from cardio appointment. Turns out echo showed lvef 20-30% so he wants me to take baby aspirin. BP is now about 100/65. He's up'ed the coreg up to 12.5 2x ad day and switched me to benicar 10mg once a day. I'm also supposed to take lasix 2x a week now.
He also wants me not to do anything more then small amounts of housework. The hospital dr. had said I could walk as much as tolerated, but this dr. doesn't want anything. He doesn't want me really leaving the house. This was a huge shock to me since I am an athlete.
I don't know I just feel like it was a step back today. I was definatly more hopeful going into the appointment then I am now.

It is very, very hard to go from being a fit and "in shape" young woman to being told to do next to nothing. But the instructions to rest have a purpose. I was a 30 y/o exercise physiologist/RN when I was diagnosed. Before I got pg I was swimming 3 miles a day.

It felt horrible to be told to do nothing. Remind yourself that the statistics support the fact that this is not likely to be your permanent status. Save you energy for the essentials: you and the baby. No housework, no exercise, no grocery shopping. Think of this time as just for you and your baby. Allow others to do as much as they can for you...it is OK and it is for the long-term best.

When I was diagnosed we had my MIL stay with us for a month. I did nothing but sleep, hold the baby, change some diapers, feed some bottles and then do it all over again. I did some very, very mild walking slowly up the block. As my EF climbed a smidge higher every time, I was eventually released to do a monitored cardiac rehab program...and even then I still rested every.single.afternoon. We hired a maid to do the heavy cleaning. At 6 months post diagnoses my EF was finally 45% and I was released to go back to work part-time.

It's been almost 11 years now and I look back at that time as a gift. Yes, I was scared sometimes and yes the thought of an uncertain future freaked me out...but I learned what the true meaning of family and friends was and I learned to just sit and enjoy my daughter. I was always on the go back then and while I know I would've loved my baby, I'm not quite sure I would've taken in every moment.

Focus your energy on healing, enjoy your baby and take one day at a time. We are here for you in the meantime.

[jenp]

Just wanted to say that you are NOT alone. Most of us, at some point, have thought "why did I trust that person? I know my body, and I knew something was wrong." However, we have more things to think about, and it's hard to imagine that something like this, heart failure, could be wrong with US?!?! We want to go home and be with our new child, not stuck in some ER trying to convince the MD that we are not crazy and in fact, there is something wrong.
Hang in there! It will get better. The good thing is that you, from what Dr. Fett says, live near great cardiologists. It is hard to go from working out and being active to being told that you have to do nothing. Although it stinks now, try to take advantage of this time and try to use it to your advantage to enjoy every single moment with your new baby. Try to pamper yourself a little, get more sleep, take naps, and relax (can you tell I'm still sleep deprived?) haha.
When I was diagnosed, I could never imagine my future. I refused to think about going back to school, what I would be doing next year, travel plans, etc. I was so scared. And I'm not saying it is suddenly easier, but you can work past it. The thing to remember, is that you have been diagnosed, and now, you are getting therapy for the heart failure, so it should start to improve. It will not improve over night, but hang in there. We've all been in your shoes, hearing the words "heart failure" and wanting to give up right then and there. Hang in there, and everyone here is willing to do what we can to help you through this process.

[lisamavs]

I am so sorry you have PPCM but I am glad you found this site to help support you. Dr. fett and the women here are so wonderful! Understand that you do need to just rest right now and when you can, just take care of yourself and your baby. If you can get help then try to get it. My mom moved in practically for the first 4 months, I did almost recover but had a relapse due to stopping the medications too early. Now she is back again and I am getting rest when I need it. My little guy is 9 months old and about 25 lbs already so I need help while I adjust to the rapid increase in medication making me very tired and sometimes lowers my BP a little more than I would like it.

There maybe times you feel more tired than others and you will learn how much you can do. It is almost like we have an energy reserve and if we use it all, it takes time to refill it back up. For example, we had about a foot of heavy wet snow and my husband was out of town and my mom and I had to snow blow. The machine is heavy and it took the two of us to do it. Well, honestly that was 3 days ago and I really had to rest alot afterwards and I am just now feeling better with some energy again. It also sounds like you just increased your meds so you may even feel more tired then before but that is also normal. I remember feeling scared whenever I increased my meds because I felt like I was getting worse because of feeling more tired but I was actually getting better and it was just the medicine making me feel more tired. After you adjust to the new dosage you will feel a little better again. I also have found many nights I felt more scared and I have a RX for Ambien that has helped me with sleep. I figured when I get more sleep, I seem to be able to do so much more the next day with my baby. Don't be afraid to discuss medication with your doctor to help with any anxiety you may feel with this disease. It is such a big part of this disease but often overlooked. Get help with any anxiety or depression if you feel it or if you ever feel it. You are not alone, we are here with you.

[sbruni]

[quote=blessedbutscared]Thank you ladies for the support! I am so glad that my sister found this website I was still in the hospital when my sister told me about it. I honestly couldn't wait to get home and check it out. It helped knowing that I wasn't going to be alone through the whole process. And I'm already feeling more hopeful. The odds the hospital gave me were a little depressing.

I was so glad that I had my laptop with me in the hospital, finding this site really did make me feel so much more hopeful. I had stumbled upon some other sites in my search that had old info and depressing statistics.
I also felt those same fears that I wasnt going to be around for my baby and my sons, it was a scary time. I am feeling so much better already though!
I was really looking forward to my 1st appt w/ my cardio tomorrow, but it looks like this snowstorm is going to cause it to be cancelled,