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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Scheduled for OHS 10/15. Few questions about recovery

I've read through a lot of posts and appreciate everyone's insight and willingness to share their experiences. I'm 49 and was finally diagnosed in March. I'm a cancer survivor and had a bone marrow transplant in 2000. The cath procedure failed as the ASD is in a bad spot for a device to work. I'm wondering about:

1) How many days did you stay in the hospital?

2) What did you do to manage the pain. The potential for intense pain is making me the most nervous.

3) What about when you got home? How much help did you need to perform self-care, like: showering, dressing, going up and down stairs, etc?

4) How long before you could drive?

5) What is one thing you wish you would have known ahead of time?

Thanks for your generosity,

Geri

I had ASD closure through open heart surgery at the age of 52. My case might be a bit different, because I was in major afib and quite run down by the time I had the procedure. I was in the hospital for 9 or 10 days before surgery, 5 days after. The pain was managed fairly well by hospital staff. They will most likely give you options based on your level of discomfort. This was 6 years ago in my case, so my memory is a little fuzzy on specific details. Showering and self care were a challenge. My husband was there to help me up during the day and in the middle of the night to go to the bathroom. I used a reclining chair to sleep in for 18 days once I got home and had meals provided for 2 weeks by church members. That was very helpful in my case, but you may be more capable. 6 weeks for recovery before driving, going to work part time, etc. I needed all of that time and more, but your case may be different. I wish I had known ahead of time how challenging it would be to lie flat in bed. I also wish I had known about how the surgery would affect my mood. I joined this forum about one month after I got home, because I felt depressed about the amount of time recovery was taking and I felt alone, though my family was sympathetic. Keeping in touch with people who understand how it feels can be really valuable. I hope you'll be patient with yourself and the process, regardless of what it involves or the amount of time it takes. Mine was a more difficult case, I think, so you'll hopefully have an easier time.

Mytree,

Thanks so much for your thoughtful response.

I'm glad to hear about using the reclining chair. We have one and I'll use it. Did you need help with bathing/dressing for very long? My mom will be here for a few weeks and my husband and children will help, but not sure if I need more help that for the first 3 weeks.

Geri



mtyree said:

I had ASD closure through open heart surgery at the age of 52. My case might be a bit different, because I was in major afib and quite run down by the time I had the procedure. I was in the hospital for 9 or 10 days before surgery, 5 days after. The pain was managed fairly well by hospital staff. They will most likely give you options based on your level of discomfort. This was 6 years ago in my case, so my memory is a little fuzzy on specific details. Showering and self care were a challenge. My husband was there to help me up during the day and in the middle of the night to go to the bathroom. I used a reclining chair to sleep in for 18 days once I got home and had meals provided for 2 weeks by church members. That was very helpful in my case, but you may be more capable. 6 weeks for recovery before driving, going to work part time, etc. I needed all of that time and more, but your case may be different. I wish I had known ahead of time how challenging it would be to lie flat in bed. I also wish I had known about how the surgery would affect my mood. I joined this forum about one month after I got home, because I felt depressed about the amount of time recovery was taking and I felt alone, though my family was sympathetic. Keeping in touch with people who understand how it feels can be really valuable. I hope you'll be patient with yourself and the process, regardless of what it involves or the amount of time it takes. Mine was a more difficult case, I think, so you'll hopefully have an easier time.

You should be fine with help from your family. I don't remember needing help with showers, but I did have a hard time with stamina while showering. I had pulmonary hypertension (high blood pressure in the lungs) as a result of my condition, so that may have been the reason. I needed some help with dressing, but I don't remember for how long. You may not need it. My sister washed my hair. By the way, I found the instructions from the hospital (upon release) helpful, but not at all intense enough for my situation. My guess is that levels of care needs differ so much from patient to patient that it's hard for them to cover all bases. Reading other people's recovery stories online made me feel as if mine was much harder and longer, though I wonder if those who are most active online are sometimes those who are having the easiest recovery process. The key is to just try to go with it and allow your body to heal in whatever way and time period you need. I asked so many questions before surgery that my roommate asked me to cut down, because I was making her nervous. I then had to relax a little and just trust the process more. Good to get info, though.

GF, you may have someone in your family that you can borrow a shower chair from, if you do not have a place to sit. They also may be for rent through an area facility.

My mom has used one since she broke her hip, and I see it in my future, as my days of being able to get out of the tub are limited!

I know that you are really looking forward to getting back to some semblance of normal, just please take your time, do not rush or over do! Please listen to your Doctor and especially listen to your body!

I know, I'm just like a mother hen, but I think there are many who will echo my concerns!