Hey Guys!
Love my daily trips to this site, you all make me feel so good, and continue to give me courage to get through this!
LES!! I am sorry to hear you have going through the same thing, I have learned that constrictive pericarditis is common with people with a prior heart surgery, the good news is, it is scar tissue and not calcification from what I understand, which is easier to remove. I too was rejected from Cedar Sinai Medical Center in LA, and was referred to Cleveland. I live in Las Vegas, Nevada, so I am taking quite a trip to go there, but really feel good about Dr. Lytle, his mortality rate on this surgery so far is zero, and I feel confident in him with this surgery, especially with the fact that it is rare and very few doctors have a lot of experience. Please beware of doctors who want to do the surgery, and do not have experience. I had two doctors locally who wanted to have experience, and had not, so they were begging to do my surgery. THEY still call my house! One of the surgeon's told me, "well Cathy, if I have too, I will just roll in the ole heart lung machine", needless to say, I was out of there fast!! I met a husband and wife online two years ago, they went to an inexperienced center and to date he is the only one that has had a bad experience. They quit after two hours in, only removed parts of it, and then never came back in to see him again. BUT, I don't want to worry you...just ASK how many actual pericardiectomys they have done for constrictive pericarditis.., how bad their calcification was and so on.
DId they tell you how thick the scar tissue is?
What symptoms are you having?
Nan, if you can email [email protected], I can give Paul your email address, he is a reporter from The Las Vegas Review Journal, or, I can give you his address...I know from the first article they did on me, people tracked me down from my son's school, they had mentinoned it in the article, and I was surprised how many had no clue what to do. AS was I when this whole thing started. I still remember the doctor telling me I had constrictive pericarditis, and thinking, what the heck is that???? IF we can help one person, or make them feel like they are not alone. After I was told what I had, I came online and typed pericardiectomy, and literally one site came up, i felt lost and alone, it was horrible. Honestly, you have all given me courage to get through this!
Teri you continue to be a blessing here, and keep us all inspired! I will have my laptop with me in Cleveland, and I will show my son's where this site is and they will update you during my surgery. They will be loving things too do, since they will be sitting in a waiting room so many hours! I bought them a portable DVD player, along with my laptop, so they can watch their own movies, and of course all the portable game systems. Hopefully that will keep them occupied.
The atrial fib has finally slowed down, it let up in the middle of the night. I was completely exhaused when it was over. I felt like I ran a marathon myself!
Betsy, I hope you continue to do well, and rapidly recover...
I WISH I could MOVE up surgery.......one of the surgeon's is going out of town, that is why I couldn't get my June 6th date I asked for...so as the days slowly go by, I slowly go quietly insane....lolol...I will make it, I refuse to have it any other way!
God bless and keep on writing!!! I so look forward to all of you!
your friend,
Cathy