symptoms during recovery

[momofthree]

Dear All,

I am seeking some input/insight in this area. When you were recovering, did you still have the good/bad days with fatigue? I often have upset stomach and developed reflux after my diagnosis because for some reason I began to vomit a lot. I can sometimes still feel my heart while at other times it is as if nothing was ever wrong. I am wondering what it was like for others during recovery with their heart/body and whatever else you remember. I read the post by another about high/low bp, etc. That was good information, too. Please tell me what you think and this will help us all to know what we can perhaps expect during recovery. It is a process and sometimes I wonder what is part of healing and what is part of just being human. We go from being pregnant for 9 months and into this and I now have a hard time remembering what was normal for me before. Understand? I also had severe deconditioning of my body due to my prolonged stay in the hospital. So that is another aspect of my recovery. Your input is welcome and appreciated very much.

Sincerely and thanks,
Alison

[Becca]

To be totally honest...I felt like CRAP during my recovery. In fact, as several other women can attest too, I felt worse, while my heart was getting better! There was a time that I thought I was going down hill and begged my cardio for a new echo...and it turned out I was UP!

A lot of us also get very symptomatic around our periods. Don't know why, but even with an EF of 55, I feel really crummy at that time of the month.

It also took a lot just to get my energy back. I was on bed rest before my daughter was born for 2 months. Plus basically in bed for the 2 months following. My body just stopped wanting to function. I started cardiac rehab, and it was wonderful. I was able to feel safe getting some exercise! You might want to check it out!

I also noticed that foods that I could eat before, really made me feel crappy. Sugary stuff and lots of carbs would make me feel so shakey and yucky.

It is a slow process, but remember to take each step as a success! The first time I climbed a set of stairs (mind you it was like 6 stairs!) without having to stop after each one, I sat at the top and cried with joy!

[momofthree]

Thanks Becca. This is most helpful. Please keep such information coming ladies. It is helpful to compare some notes about common recovery issues. Appreciatively,

Alison

[SusanD]

Alison, my biggest issue during recovery was the fatigue and low bp (d/t titration of both the beta blocker and the ACE). I wanted, needed and craved a nap every day. I would lie down (MIL was watching my baby) and literally sleep a physically exhausted sleep for 3 hours. If I was out and about at the grocery store, my body would feel so heavy that I just couldn't take another step. This gradually improved and at around 7 months I could no longer even take a nap...I just wasn't tired. For me, this correlated with an EF of around 45% (up from 25-30%).

Alison, has your Dr. mentioned a cardiac rehab program for you ?

[Yvonne]

Hi Allison,
I'm now 7 months after dx and I still feel my path goes like in the mountains, big ups and big downs (physical and mental). Sometimes it feel like up hill, sometimes I really go down hill, but after every dip I feel I'm a bit further than before. First weeks after leaving the hospital I only could sit for one hour in a chair and in between I slept a lot. This improved slowly. I started some light home exercises (I'm a physio myself) and expanded every time the time I was up. One month after, I started cardiac rehab and my span of exercise improved. But I still had my very bad days, in retrospective this was often related to an increase in my betablockers (and after every increase the 'dip'time is longer). Now I can function rather normal, but I still need a nap after lunch. Sometimes I do too much and have to pay for it after (I will be very tired then and have a high heartrate and feel really uncomfortable). So it is still trial and error. Especially when I'm not feeling well it is difficult to keep faith. But when I look back I have to admit that after every dip, I will come back at the same or at a higher level than before. So it takes time and you can see your progress at best after a longer time period.

[SarahsMom]

Allison,

Hello there...I remember during my recovery I had sharp pains in my chest - heart area and I remember having shotness of breath...I'd get scared, take my blood pressure and it was LOW and my pulse was in the mid -70's.

The first 2-3 months was the hardest...after that I started to feel "human again"....hope this helps!

Kari

[tabs]

Alison,

My recovery was complicated with 2 extra hospitals stays from complications. I was very tired! I had a wheel chair for going out. I was not allowed to shop without it (meaning I did not go out much because I felt like a freak). I went for short walks always accompanied unless in the hospital. I was slowly able to move and do more.

I was first hospitalized May 1 and by the following January I was able to walk all my children to my son's school. I was also able to do most things around the house. I still needed a rest or two or three, but I was doing it!

It is now almost 5 years later and most days I take a quite time watching TV and perparing for supper. If I am fighting a cold, I end up needing naps.

Hope this helps,
Twilah

[Gerie]

Hi Alison! It's Gerie. I hope things are going well for you in Staunton. My husband was stationed at Oceana a few years ago. He is now stationed in Chesapeake at the Northwest River Annex. It's good to hear of someone so close in location. Please e-mail me when you come back down or anytime- fulk78lt@cox.net. I can only imagine how hard it can be with 3 kids.

Anyway, to answer your question... I had my ups and downs as well with fatigue. I was diagnosed right before my 1st child was born, so I had only 1 child to deal with with the PPCM. I was so thankful for the bassinet in the bedroom. I only went downstairs to eat. Gradually I got my strength and endurance back, but my EF remained 25% for a year. Just recently went up to 55%, then found out we were pregnant, and my OB thought it could be due to the pregnancy.

Were you ever referred out to a specialist out in town, rather than continue at Portsmouth? I had to get a nonavailability with my 1st child due to my having Type 2 Diabetes, but with my current pregnancy, you don't have to get them anymore. I am seeing the same high-risk doctor I saw with my first child... and I am definitely getting my tubes tied during my scheduled C-section which will occur sometime between 34 and 38 weeks. Kyla was born at 34 weeks and you couldn't tell today! :)