Just was on and saw that you started a journal, but I missed it :( Oh well, found it now, praying for you and hope they are able. I see you recently had your surgery canceled, probably a good call. Hope everything goes well moving forward! you know how to find me if you have any questions or need anything.
I hope you are feeling better and can get your surgery rescheduled soon. It is really hard to wait when you know it is inevitable and all you want is for it to be over. It will happen when the time is right though, and you will do great. You are informed, prepared, have a great surgeon and strong faith.
Sorry to hear about the strep and reschedule. It's hard enough to wait for this and now to wait some more must be extra hard. We will keep you in our prayers and pray for strength while you are waiting. There is a song, "While I'm waiting" that came to my mind when I was waiting for my surgery. I hope the reschedule will be soon after so you can get back to all the things you love!
Hope you and your son feel better soon!
Thanks for the guestbook entry.....I haven't journaled in awhile, so I wasn't expecting one:).
I went to a new cardiologist last fall, and he put me on a low dose beta blocker (2.5 mg Bisoporol). It has really helped me feel better. The irregular heart beats are still there, but I just don't feel them very much. Not sure how that works, but I am grateful for the reprieve. I still feel awful when I go to altitude (skiing), and that bums me out because we hoped to retire somewhere in the mountains. I keep trying to figure out what triggers my "bad days" but it just seems so random most of the time. I know dehydration and lack of sleep will do it, but there are other times when I just can't figure it out. Do you feel anxious when your palpitations are bad? I always feel anxious and fatigued when they are bad. I'm not complaining though......I really do feel good most of the time. The surgery definitely makes you grateful for each day, and I have to say it truly is a gift in that respect. Not a gift I hope to receive again though!
You have a great surgeon, and I can assure you that the surgery won't be nearly as bad as you are imagining. The waiting is so hard! I was terrified of the pain, but that was way less than I imagined it would be. They are very good at pain management, so don't let that freak you out.
You will be in my thoughts and prayers in the days ahead. Stay strong and God bless you.
I had my mitral and tricuspid valves repaired 16 months ago, and I remember how tired I was before the surgery......I had an overwhelming urge to lie down all the time. I always thought I was just getting old, but it was actually my valves. The surgery will fix that, and I think you will be amazed at how quickly you recover. At three weeks post op, I had more energy than I did before surgery. I have always had average to low blood pressure, but since my surgery, it has become really low (usually 90/50 or lower). It doesn't bother me, but I don't know why it is low.
Godspeed and good luck.....the waiting truly is the worst part!
Greetings from another Mt. Sinai Alumna. Dr. Adams did my mitral/tricuspid valve repairs last May. I also had a complex repair, forme fruste -- I'm sure Drs. Adams and Any showed you the pictures -- and a really good result. The whole team is amazing and I know you'll be in the best possible hands (well, technically speaking, the best possible hands will be in YOU!).
Please feel free to read my journal and if you have any questions, just holler. Thinking good thoughts for a speedy end to your regurgitation and an easy recuperation.
I am 42 and am 8 days post op. Our stories are very similar except I did not know I had Barlow's syndrome until October 2012.
I had my Mitral and Tricuspid valves both repaired with Dr. Adams on Feb 26. My MV regurgitation was in the severe range. My post op echo showed both repairs were very successful. I am feeling really great here one week later at home. Walking, and even went for ice cream with my husband and daughters yesterday. You will be in fantastic hands while you are at Mount Sinai. The first couple of days are tough, but each day there is so much improvement, with the bonus of what you have to look forward to when your heart is working correctly!
Feel free to check out my journal and let me know if I can answer any questions for you.
Blessings to you Amanda!