Hey Nan,
Your more than welcome...you and I are a lot alike, I am the same way, I have to educate myself on everything. A lot of people say I should bury my head in the sand, and say what I don't know won't hurt me, but like that article, I did that in my life once....when my son's were born,...we kept asking if they should be moved to another hospital in town, and they assured me they were fine where they were...(at the time, we had insurance that covered 100%) but we were watching Mothers come in that didn't have insurance, and they were shipped down the road. Come to find out later..I found out their were different levels of neo-natal units, and when we asked, they told us, oh, if you go there, their are so many babies, they are at such a higher risk of infection. Dummy us, having twins...we were in a hospital with ONE neonatogist, and the other hospital had two on duty 27/7..long story short, the doctor went home after administering exosyrup, which the package insert states to have a DOCTOR present for twenty minutes after, he was tired and went home right after he gave it to my son's. My some strange twist of fate, I was present, it was my first time seeing the babies, and my one son's alarm went crazy, and he was suffocating,he formed the mucus plus and was turning blue...needless to say the next cat scan showed a grade four IV brain bleed. At the time, they told us, that he could be blind, deaf, retarded, or have CP, or ALL FOUR. We were extremely blessed because the odds were so against us, but he escaped them all but one...and he has mild muscle tightness on his right side...needless to say he will never be a concert pianist or watch maker...but, it all could have been avoided. Lesson learned..never settle, find out all the INFO you can..and if you need to travel, eat beans and weenies, but find the BEST!! ANYWAY, enough of that....Nan, I wish I would have picked MAYO...When Julie got back on the phone after I spoke with Dr. Jae K. Oh, she said I could get in right away....literally within a week if I wanted. SO, the time issue is not a problem. The problem is they charged my credit card two thousand dollars for the hotel for Ty and Shane and Ned already, they told me NO REFUND...and Miracle Flights already booked the tickets, and so did my brother, and two friends and Mother. I am 13 days away, I hope I didn't make a huge mistake again.
YOU do need to find out if they did a partial pericardiectomy, or a full....Dr. Oh said that was very important to know. If you can Nan, GET all your records...I did that from my first visit at Cedar Sinai..to Mayo to Cleveland. I have every record...film...tape of everything they have done. Call Mayo and tell them you want ALL the records from your surgery, including ALL DOCTORS NOTES. You will find out things you wouldn't believe. They have to give them to you, and honestly, its just good to have, espeically when you do not live in the same city as the hospital. I have copies of every cat scan, MRI and Chest xray film from all three hospitals with every sheet in my file, doctors notes you name it, they will make copies for you. Espeically having records of your surgery, so you know everything that was done and not done while you were there. Plus its quite interesting to read, and you being an information hound like me, you will enjoy reading everything that transpired. In the records there is so much more info there. Dr. Oh told me if you only had a partial pericardiectomy that would explain the abdomen swelling, and, he did not feel that if you were as large as five months, that would not occur from constipation. Your appt for the 21st is for Mayo????? YOU are 100% correct about Dr. Schaeff, I doubt highly Dr. Lytle can beat his record in these...I doubt its even close. I loved the way Mayo was so open, and they knew the stats right off their head. When I called Lytle's office and spoke to the nurse, she said, I doubt Dr. Lytle knows right off his head how many he has done, and I said, well, I called Mayo; they knew without looking. She told me Lytle was leaving FOR VACATION AGAIN, and transfered me to Kleins office, she said he would call back,but he has yet too. Mayo communicates so much better. I think I am stuck with Cleveland, and I am bummed. I would love to go to your surgeon, BUT, the one thing I will like if it happens as Lytle said, and that is not cutting me down the middle...instead cutting under the left breast...they say he is one of the only surgeons that has perfected that. I guess we'll see. I will be the guinea pig...argggg. ALso Nan I have heard that removing the back around the AV groove area is most difficult, so if you didn't have calcification there,that might explain the partial. But find out...!! One last thing, I agree with you, on the number of cases is not being put out there...this is way too bizarre, and if you head to The Cleveland Heart Forum, there are a good number of people there as well, and how many have this that don't have computers!! I asked Dr. Oh about the mortality rate on this surgery for me; and he told me that if the calcification is adhered to my heart, it becomes a completely different more complicated surgery, and being that I am severe, they are concerened about that, but he said, "Cathy, you will surely die without surgery, your heart is already failing, at least in surgery you have a shot at life". I was told I will be in surgery from ten to eighteen hours, if I am adhered, and my MRI is not showing any fluid left between the pericardium and the myocardium. That is not good, but I will remain positive and dive right in. One last thing, how is your incisions? how long is it, and does it stick out? How far up does it go? I keep forgetting to ask about that...Cath