kathy's Journal

I had surgery for a congenital BAV two years ago. I am one of 6 children in my family. Both parents required extensive heart studies and neither had a BAV. All my sibs have had an echo done of their heart and have been cleared. I have three grown children and have encouraged them to also get echos. Has it been the experience of those with congenital BAV that any of your children, parents or sibs also have been given this diagnosis. I find it odd that I am the only one in such a large family to have been born with this if it is in fact hereditary. Am I just a fluke of nature, I certainly would prefer that.

Two years ago today I had a AVR at University of Michigan. Thinking of my surgeon (Dr. Deeb) and feeling so very thankful for his skilled hands and team. I remember being asked by many people after surgery about how I got through it all. I said then and I still will say "its doable". As scary as it all is, its doable. I have seen loved ones suffer through much worse with other diseases or procedures and although this is quite the journey "its doable". My thoughts and prayers are with all who are facing the beginning of this journey. Have faith!

I know what they say not to do during recovery but do you really not feel like doing that \"stuff\" anyways or eventually do you feel better so that your feel like a caged animal? Just curious about it, certainly dont feel like mountain climbling right now but wondering if next week will laying around mostly get very old very fast..

Arrived home yesterday the 13th, the ride was not real fun. The backseat is very bumpy ride if the roads are not smooth. Afterwhile the further north we got the smoother the roads were for me. The surgery went well, mission accomplished, except i had a narrow opening, the anulvar(?) ring and in order to get the size valve he wanted in he needed to do some patchwork so he did and he replaced my valve with a cows valve. The recovery was bumpy, in fact the two days post op were the worst. I waited in waiting room for 21/2 hours before they took me in, my doc had car trouble and was going to be late, they took me into OR just slightly out of it. I complained that I had some pain while they were working on a line and thats the last I remember. Woke up in recovery to my worst nightmare and that was to be still intubated. My husband knew I had a fixation about this pre surgery so he knew I was freaking out. He said that I was alert for about 11/2 hours while still intubated> Luckily, I wasnt aware of that whole time, I would say about 20 minutes. My stay in ICU was great, they were very attentive. Although the first two days seemed long and honestly painful, the third day was a huge turning point for me. The pain was tolerable and I already felt onto the road to recovery. I was in ICU for 4 days, they didnt have a bed for me on the regular floor. That was fine wtih me, I ejoyed the private room. I can say completely honestly to everyone out there in the waiting room, no two surgeries or recoveries are the same. The better shape you are in going into this the better time you seem to have recovering. I say this cuz I am in horrible shape, lol seriously. A man at least 20 yrs my senior was doing leaps and bounds around me in ICU. I was teased about it, lol it was kind of funny. ONce you start to feel better its like a light switch gets turned on. For me when I need to repeat this, its just getting by those first two days. MY visiting nurse is arriving so I will continue later,,,, thank you allfor your well wishes.

Spent a good share of the night and this morning reading previous journals. Scared out of mind, keep hoping that the \"calm\" so many have referred to the day of surgery begins soon for me. lol Definately not feeling the calm right now. will have to travel 4 hours today spend the night and be hospital at 8:30 am. So ready for this to be over, the waiting is torture and yet somehow I think plays an important part in this whole process but I\'m not able to put into words just yet. My story is that I have a bicupsid valve diagnosed roughtly three months ago with the presence of a heart murmur found by my husband (pediatrician) who I asked to listen to my lungs due to a cold I was getting over. Then all heck seem to hit the fan from that moment till now. I feel fortunate that although having it since birth it is only now in my fifties making itself known. Although I can say after much retrospec that I was in denial for years. They kept asking me if I was symptomatic and I said not really. Then the surgeon said that what happens often slowly is that people put their lives in a box and over time the box keeps getting smaller and smaller. I started to cry at that point cuz thats exactly what has happened to me. I thought I was just depressed, I have been having some flutters and upsets that I just couldnt explain very well. I have been fatiqued but thought my arthritc knees were getting worse and causing me to slow down. To make a long story short I have been symptomatic for years. So here I am, finishing my first journal entry then getting ready for my trip to Ann Arbor. Scared beyond belief, trying to act all brave and \"no big deal\" for kids and husband when all I want to do is cry. I normally am not a crier, so once the flood gates open its hard to close them again, lol Better for me to not go there. Just found this site late last night. Grateful and encouraged by many of your journals. Could relate to many of your pre-surgery entries. Im in the mode next time I take a shower at home I will have had the surgery, next time I sleep in bed I will have an incision. Getting old, lol Appreciate thoughts and prayers from all you wonderful veterans. Will post my progress as soon as I can. Thanks for listening