It’s 2025 - onward! Another sleepless night on the road to my son’s OHS end of Jan. Why should NYE be different? There are no words for thanking all of ...Read more
It’s 2025 - onward! Another sleepless night on the road to my son’s OHS end of Jan. Why should NYE be different? There are no words for thanking all of you, starting with Adam. Richards funny jokes, Rita’s wisdom. Adam’s videos along w your testimonials got us to Dr ill Hamamsy at Mt Sinai. understanding post surgery, what to take to hospital. I could go on. Yet i sometimes feel like I might not belong here-i am Mom, not the patient and maybe I’m just spying on you! I will never truly know what you go through. There is a commercial for St Jude hospital where the father says “The hardest thing in life is seeing your child in pain and there’s nothing you can do about it. “. Thank you for making my pain lessen and for allowing me to spy. You have all given me amazing insight, perspective and hope! Here’s to 2025!
Richard Munson My prayers and good wishes for your sons upcoming surgery and recovery. You will never be considered ... Read more
Richard Munson My prayers and good wishes for your sons upcoming surgery and recovery. You will never be considered as spying. You are his mom and you will always be no matter how old he gets. Its a special bond that exists that we dads will never have. I see it and accept it between nancy and our kids. I had it with my mother. Its a good thing.
Grace Mason I think it would be harder as a mom to go through this experience Susan. You are definitely a part of ... Read more
Grace Mason I think it would be harder as a mom to go through this experience Susan. You are definitely a part of this group of warriors, as you are a warrior in the search for the best choices for your son. Wishing you and your family all the best in your journey 💞
Adam Pick Love this. You are in great hands Susan! My thoughts and prayers are with your son, you and your medi ... Read more
Adam Pick Love this. You are in great hands Susan! My thoughts and prayers are with your son, you and your medical team. Great job finding Dr. El-Hamamsy! Happy 2025!
Rita Savelis It is often easier to be a patient than a caregiver. Take care Susan.
Rose Madura Susan, we certainly welcome you as you advocate for your son. God bless you on this journey! Please ... Read more
Rose Madura Susan, we certainly welcome you as you advocate for your son. God bless you on this journey! Please keep us updated on everything! ❤️🩹
Adam Pick @Rita - I could not agree more with you. When Robyn, my wife, had her brain surgery... I was a comple ... Read more
Adam Pick @Rita - I could not agree more with you. When Robyn, my wife, had her brain surgery... I was a complete mess. That said, I am starting to feel like we should maybe create a "Caregivers Checklist for Heart Valve Surgery" to help all the caregivers in our community. That might help relieve some of the anxiety, stress and confusion about the patient journey. What do you think?
Rose Madura Love it! I know my Richard was a nervous wreck but did a good job of trying not to show me how scare ... Read more
Rose Madura Love it! I know my Richard was a nervous wreck but did a good job of trying not to show me how scared he was.
Kimberly Eisenhut Yes, I agree with that idea! It would be a great addition so patients and caregivers have a list of t ... Read more
Kimberly Eisenhut Yes, I agree with that idea! It would be a great addition so patients and caregivers have a list of things you will need or want ahead of time as well as maybe helpful tips for the patients and caregivers about what to expect and before and after care tips.
Richard Munson Richards are never nervous. He was named after richard the lion HEARTED. Richard edwards are even tou ... Read more
Richard Munson Richards are never nervous. He was named after richard the lion HEARTED. Richard edwards are even tougher.
Ana Brusso Agree with Rose. Please keep us posted. God bless you and your son. 🙏❤️
Pamela Gregory You definitely belong here Susan! You are a great Mom to do so much research and find an amazing sur... Read more
Pamela Gregory You definitely belong here Susan! You are a great Mom to do so much research and find an amazing surgeon to fix your son. We are all here to support you in any way you need
Susan Lynn Susan - OHS is a team effort. I think it's every bit as hard on our loved ones - after all, we pat... Read more
Susan Lynn Susan - OHS is a team effort. I think it's every bit as hard on our loved ones - after all, we patients get all the good drugs! My husband and sister took it very hard, but they were my biggest cheerleaders right up to game day! You'll do the same for your son. Positive attitudes go a long way!
susan harris Thank you all for your support and comments. It means the world to us!
susan harris Adam, glad to help with caregiver help. I've been researching things like "don't tell them It will a ... Read more
susan harris Adam, glad to help with caregiver help. I've been researching things like "don't tell them It will all be alright..." but its hard to know what to say...things like that would be invaluable from folks!
question for anyone w mechanical valve and coumadin-warfarin: how do you remember to take it every day and please tell me honestly, do you forget?
Rita Savelis I take coumadin with dinner. I have it in a small pill box marked with the days of the week so I can ... Read more
Rita Savelis I take coumadin with dinner. I have it in a small pill box marked with the days of the week so I can see if I've taken the day's dose. One time I forgot and freaked out but there was no reason to. It was fine. Sometimes I take it much later than other times. Again, one is SO anxious when one starts and then one gets used to it and relaxes. There is no reason to freak out. I'm on other meds and it's "okay" if I miss them occasionally. I feel for you because I was SO nervous my first year. Now I don't think about it. I wrote a post about taking anticoagulants in my journal. I think I wrote it about 7 years ago. You can have a look at it in my journal.
Suzette Schear I have my daily pills on counter and take every morning.
Robert Miller I don't have a mechanical valve but the question seems more about taking the medicine. When I am at h ... Read more
Robert Miller I don't have a mechanical valve but the question seems more about taking the medicine. When I am at home it's not much of an issue. I have the am/pm dispenser down in the kitchen next to the air fryer and microwave. So when I get food, I see it which reminds me to take the meds. When I travel, it's a bit more difficult. I don't usually forgot it completely but I might take it a few hours later. I am told that if you miss it by more than 6h, don't take it anymore. One solution might be to set a daily reminder/alarm on your phone or some other device.
I am from: Langhorne, PA
like I might not belong here-i am Mom, not the patient and maybe I’m just spying on you! I will never truly know what you go through. There is a commercial for St Jude hospital where the father says “The hardest thing in life is seeing your child in pain and there’s nothing you can do about it. “. Thank you for making my pain lessen and for allowing me to spy. You have all given me amazing insight, perspective and hope! Here’s to 2025!