Randi's Posts

Hi Everyone, I got the call yesterday that my heart valve sparing surgery will be on June 20. I have a five year old son who I am very very close with. For the first 3 years of his life I was his soul caregiver I am now married and my husband (who is also known as Dad) gets enjoy the raising of our son. From what I understand the time spent in the ICU and the time in the hospital is not quite as long as if I were having the valvue replaced but if I understand things right I am still looking at 4-5 days at the least. (If I have it my way it will be three days ha ha) I am wondering if anyone has been in this position with a child as young as mine and having to make the decision wheather he comes to see me in the hospital or if my husband attempts as many distractions at home to keep him from worrying about where I am. I have told him that mommys heart is broken and the doctors need to fix it (it was the best I could think of when dealing with one so young) so he understands that I have to go to the hospital. I am more worried what long term effect it would have on him if he were to come and visit as opposed to not seeing me for 5 or more days. Anyone who has gone through this and either had their children come visit or didn't I would love any feedback your willing to share. Thanks for reading. Randi

From what I understand Kryptonite Glue is a glue that rapidly bonds with bone and can speed up recovery of the breastbone. I am wondering if anyone has used this glue or known anyone who does or if you have talked with your surgeon about using it and what his/her perspective was on it? I go to meet with my surgeon next Thursday and I would like to take whatever information I can with me regarding it. Thanks to anyone who send replies :) Randi

Hi all, I was diagnosed when I was two with Marfans syndrome. My mom also has the disease so she knew what I was going through and what to expect through most of my life. At twenty one I have my son Joe, what a perfect little person he is. In December my Fiancee (Keith) and I went for a routine check up to the cardiologist in Calgary. We are wanting to have another baby so our plan for the appointment was to discuss that and what the risks were to the baby and such. Well about half way through the appointment the doctor left for about twenty minutes. Keith being the carefree guy that he is thought nothing of it and continued to play eye spy with our son. The doctor finally came back in with two nurses. Talk about having your socks knocked off when you go there wanting to have another baby and then he tells me that I need to have a valve sparing surgery and he would be refering me to a surgeon. December was a whirl wind I made the mistake of googling oh what a bad idea that was!!!! Don't do that lol Now I am sitting here one month before my first surgeon appointment and I think I have finally been able to come to terms with what is going on. I would appreciate any advice anyone has for me in terms of the procedue, the recovery, and just generally what to expect. I don't know anyone who has gone through this that can help me and I would love to connect with someone who has. I ordered Adam's book and I am very much looking forward to it getting here. I want to thank everyone in advance for any advice you want to share with me. I also want to thank everyone who posts on here daily it has been a huge help for me to read others stories and to know that what I am feeling is normal and that it is what everyone else is going through to. Take care everyone. Randi :)