We walked 1.5 blocks to the hospital this morning at 5:00. There were a dozen or so other families and patients in the waiting room. Thankfully, mom was one of the first people to be called back for prep. Jim and I got to join her shortly after she was called back. We spent some time talking to the nurse, Mom asked a few more questions about what she can expect when she wakes up for the first time. The nurse was very kind and calm and assured her that they'll do everything possible to make her comfortable. As expected, mom was pretty nervous. I was too. Thankfully, Jim was his usual calm and positive self. We took a picture, and shortly after we hugged her and told her we loved her and that we'd see her soon. She's so brave, I admire her for how strong she's been through this entire process.
I have a pager in my pocket that will go off twice. It will go off once around 7 o'clock when they begin the actual procedure. The second time will be between 11-12 when they are finishing up and the surgeon is ready to talk to Jim and I. We should be able to see her for a short period of time after the surgery is over. They will only let us be with her for 15 minutes because they want her to rest.
I will make another journal update as soon as I have any new information. Thank you all for your messages, they really mean a lot to her, and her family.
It's 12:45 a.m. and I still haven't been able to fall asleep.....and I'm not even close to being sleepy. It's going to be a short night since we have to get up at 4:15. I will probably be ready for my big nap tomorrow!
I got the surgery time I requested, and I am to report to the hospital at 5:15 a.m. tomorrow.......it is looming large right about now.
It was a very rainy and gloomy day here in Cleveland, so Jim and I drove down to the lakefront and went to the Rock and Roll Hall of Fame. It was pretty interesting, and it helped pass then time until we piked up Josie at the airport. After that, we drove south and had dinner with my good friend Amy. It was so good to see her after 20 some years. Thanks for dinner and making the drive to see us Amy!
I think I gave everyone the wrong impression about Dr. Gillinov......he isn't especially young (47 or 48).....he just looks like he is about twelve.
Seriously, the guy does not look old enough to be in college much less be a heart surgeon.
Last but not least, I want to thank everyone who called, emailed and wrote in my guestbook for all the kind words, thoughts and prayers. I can't even describe what positive energy I feel because of all of you! I am so grateful to have you all in my life,and I hope you all know how much I love and appreciate you.
Jim and Josie are here keeping company and calm, and I know I couldn't do this without them. I can't imagine having to go through this alone. Thanks for being here with me you guys...I love you lots!
We met with Dr. Gillinov this morning, and I got to ask my 43 questions
( I thought of a few more last night!). He is THE nicest and most compassionate doctor I have ever met. He answered all of my questions and arrested nearly all of my biggest fears. I asked how difficult my surgery was going to be on a scale of one to ten (ten being difficult), and he said it would be about a three. Of the twenty surgeries scheduled here tomorrow, mine was going to be the easiest ( unless you are me:). He said I have a 95 to 97 % chance of having my valves repaired rather than being replaced. If I do need them replaced, I will be getting a pig or cow valve....whichever one is a better fit. I asked how many valves he REPAIRS every year, and he said three to four hundred. That made me feel really good because the average number of repairs done by cardiothoracic surgeons across the country each year is FIVE! Most of them do replacements because they don't know how to do the repairs. I will be getting just two of my three leaky valves repaired. He said the aortic valve isn't bad enough to do anything with, and it shouldn't cause any problems down the road. He said he can't guarantee my heart palpitations will go away. He said they usually do, but not always, and he has no idea why. He said he would just be making something up if I wanted an answer more than that, so I didn't make him make anything up. He eased my fears about the pain too......said they really try to stay on top of it, and they don't want my pain to ever be more than a three ( on a scale of one to ten). I will be pleasantly SHOCKED if it doesn't get worse than a three. I will be sure to let him know if it does:). All in all, it was a very reassuring visit. Dr. Gillinov's caring, compassion and confidence really make up for the fact that he looks like he is twelve.
All for now.....don't want to bore you all with too many details!
It was a long day of testing today......started at 7:15 a.m. and got back to the hotel about 6:00 p.m. I had to skip my aortic ct scan (hope they don't need that one!) because my insurance company wouldn't approve it unless my surgeon calls and talks to them personally, and from what I understand, the surgeons here don't do that unless it is absolutely necessary. Worst part was, I couldn't eat or drink ANYTHING until I had ( or didn't have ) the test, so I was really hungry and thirsty until we found out I wasn't going to have it about 12:30. I can go without food, but I need my liquids in the morning! Jim was a trooper following me around all day and sitting and waiting and not eating or drinking anything either. What can I say.....he's been great, and I'm very grateful to have him here.
I went to my TCI (to come in) appointment this afternoon and learned all about what to expect the day of surgery. They started off with a video, and ended two hours later with a visit from the anesthesiologist. They cover pretty much everything except what the surgeon is actually going to do. My appointment with him is tomorrow morning at 8:00, and I have my thirty six questions all ready for him. The staff at this clinic are pretty amazing.......actually, the whole place is pretty amazing. It is the most organized and well run facility I have ever experienced. They don't miss a beat, and they all do their jobs with compassion and a smile on their face.
Tomorrow we meet with the surgeon and find out what time the surgery will be. I have requested to be the first one in the morning, but there are no guarantees. I'm a Ziegler, and I don't have any patience, so I'm really hoping for the early bird special. After meeting with Dr. Gillinov (the surgeon), we are free for the day. Might have to check out the Rock and Roll Hall of Fame!
Josie flies in tomorrow afternoon, and we're going to go pick her up at the airport and then drive south to meet a good friend of mine from long, long ago. Back in my previous life (Idaho days), Amy and I were best buds. I haven't seen her in over twenty years, so if we don't shock each other with all of our wrinkles, we should have a GREAT time. I'm really excited to see her!
Time to try the sleep thing again.....
Josie flies in tomorrow afternoon, and we're going to go pick her up
Jim and I made it to Cleveland with only a couple wrong turns. It was a pretty uneventful 8 hours. Checked into the Intercontinental Suites hotel, and it is SO MUCH NICER than the Guesthouse Hotel we were in last time. Definitely worth a couple extra bucks.
Tests start at 7:15 a.m. Tomorrow, so I'm hoping for a goods nights sleep tonight. Haven't had one for awhile.
The grand opening is only five days away. It has been scheduled for more than 4 months, so I've had plenty of time to think about it. I don't know if you are ever ready for open heart surgery, but I think I am about as ready as I can be.
Jim and I leave for the Cleveland Clinic on Monday, so this is our last weekend at home. We're trying to get all our chores done, and then go out for a nice dinner. I'm finding all sorts of things to do that I should have done awhile ago, but I'm sure we'll get them all done.
Tomorrow we take the dogs to my sister's house. A big shout out to Heidi and her husband, Dave, for agreeing to take care of our crazy dogs for the next couple weeks. Thanks guys....we really appreciate it.
Thanks to my nephew, Todd, for loaning us his nice comfy car to drive to Cleveland too. Wasn't really looking forward to bouncing home for 8 hours in my little Prius!
Thanks to my daughter, Tanner, for bringing over my three grand daughters today. It was great to see everyone before we leave, and it definitely made my day. Can't wait to see them when I get back!
“You have three leaky heart valves, and they all need to be repaired or replaced.” Those were the first words out of the cardiologist’s mouth after I had just met him last November. I felt like he had just sucked the life out of me. I couldn’t breathe, and I couldn’t think. I had no idea there was anything wrong with my heart until a routine visit to a GI doctor a few weeks before revealed a heart murmur. He suggested an echo and from there I arrived at the cardiologist. After hearing about my valves, all I could think to say was, “Huh?”. I had really hoped I heard him wrong. But I didn’t. He went on to elaborate about my prolapsed and moderately to severely leaky mitral valve, and my moderately leaky tricuspid valve, and my mildly leaky aortic valve. “You will probably need surgery sometime in the next year.” He went on to talk about pig valves and cow valves and mechanical valves and coumadin, but I didn’t hear or grasp any of it. I was still trying to figure out how I could possibly need open heart surgery in the next year. I really did feel fine, aside from a few heart palpitations. He told me it was a “big” surgery (duh!), but they could do it minimally invasively, and I would only have a 4 or 5 inch scar. I would have to have more tests (TEE and heart cath), but he could set me up with a surgeon as soon as the tests were done. Whoa…..time for a second opinion!
To make a long story shorter, I had my tests done and got a second opinion. The second opinion said, “You’re not that bad yet. Go on and live your life and come back for another echo in 6 months.” Yeah…..that’s what I wanted to hear! But then I started thinking, what if the first guy was right? What if I really do need it done in the next year? Decided to do more research and get a third opinion, which led me to the Cleveland Clinic and another echo. The cardiologist I saw there said I was a “borderline” case and would probably need surgery in the next year or two. I decided that if I was going to have to have it done anyway, I just wanted to get it over with, so they set me up to see a surgeon the next day. I met with the surgeon, and he asked me why I wanted the surgery. (Strange question…..who WANTS to have open heart surgery???) I told him that if I was going to have to have it sooner or later, I just wanted to get it over with. I also told him the heart palpitations were driving me nuts. He said the surgery may or may not relieve the heart palpitations…..sometimes it does, and sometimes it does not. He said if I were his wife, he wouldn’t recommend surgery at this time. Back to square one! (You gotta love a surgeon who tells you NOT to have surgery!) I left Cleveland relieved, but also confused. A month later I decided that since I was going to have to have it done at some point in near future, I was just going to “git ‘er done” so I wouldn’t have to worry about it anymore. I don’t see the point of sitting around and waiting to get worse. I’m headed back to Cleveland for surgery with Dr. Gillinov on October 20th. I won’t know exactly what he is going to do until I meet with him again the day before my surgery. That’s a little unnerving, but I’ve accepted it. The Clinic said they would need to do all my pre-op testing before Dr. Gillinov could tell me anything. Makes sense.
I’ve been following the heart valve journals since last January, and I think I’ve felt every emotion expressed by everyone here. Terror, anxiety, fear, anxiety, depression, anxiety, anger, more fear and more anxiety. I have slowly accepted the fact that I am going to have my chest sawed open very soon, and I am determined to somehow make this into a positive experience. I’m not sure how I am going to do that just yet, but I am hoping it will come to me as I recover. I am very grateful to have something that is “fixable”……there are many people out there who are not so fortunate, and my leaky heart goes out to them.
This has been a spiritual journey as well as a physical and emotional one. I realize each day is a gift, and I am far more “present” than I used to be. I thank God every day for my wonderful family, friends and blessed life.