Ashley's Journal

Hi friends So it\'s been 6 weeks since I had my mitral valve repaired and things are going as well as they can. I still move at a snail\'s pace and am exhausted all the time but my incisions are starting to dull and be less painful which I am eternally grateful for. I also have been told I can stop the Coumadin today which I\'m pretty excited about: only because the twice weekly blood draws were terrible... I was running out of healthy veins and was bruising like a ripe summer fruit. Thank you, to all of you, who wrote me back with such helpful advice regarding feeling so down 2 weeks post-surgery. It might have been brain chemicals resettling, it might have been the narcotics (which is what I suspect) or it might have been the overwhelming realization of what I just put my body through. Or it could have been all those things. Strangely enough, was turned out to be the most helpful was three things: 1. getting off the narcotics (obviously), 2. leaving town for a few days and getting away from the prison that was my living room couch and finally, 3. cardiac rehab. I started cardiac rehab at week 4 and for whatever reason, it helped me turn a corner. One of the nurses there told me that it was common, with returning to exercise, coupled with meeting people who have been through similar experiences that really helps pull you through the dark times. Go to cardiac rehab! It is a humbling experience but so totally worth it. I had my 6 week post-op check up today with my cardiologist and was really moved to see that my echo was now totally normal. Just like that and I was fixed? I\'m still kind of trying to comprehend what it all means. My question for all of you regards going back to work. When did you all go back? When did you feel back to normal-- ie, could think clearly and weren\'t ready for a nap after walking up a hill? Foolishly optimistic, I had originally told my co-workers I\'d be back by week 6, which has now edged closer to week 8. Telling my cardiologist today that I was taking almost 2 hour naps after my 50 minutes of exercise at cardiac rehab prompted her to suggest I take the full 12 weeks of recovery... saying that it takes 12 weeks for everything to get back to \'normal\': swelling, regain some strength and stamina, etc. Is it just me or does 12 weeks of recovery seem like an awful long time? Thoughts on this? thanks so much in advance! xo Ashley

I can\'t believe it\'s been 2 weeks since I had heart surgery. I\'m still on the couch, tired all the time. Achy. Cranky. Sore. But definitely know how lucky I am: my mitral valve was in really really bad shape. I have a check up with my surgeon on Monday (Dr. Vaughn Starnes) and I intend to ask him what would have become of me and my heart, had this not been caught? Would I have eventually slid into heart failure? The surgery itself went well- it was a miracle apparently (according to the other surgeons I talked to) that he was able to repair my valve at all. The hospital stay wasn\'t that fun- I had an allergic reaction to the pain meds and had horrible bouts of nausea... but my family was great, as were my friends who came to visit. I was able to go home after 6 days.... And now, to be honest, starting yesterday, I\'ve been feeling down but I\'m not sure why? I know I\'m so lucky but the thought of having to be on this couch any longer makes me so frustrated... It\'s hard feeling so weak and out of control. And I feel a bit like this exhaustion will never end- which I know is unrealistic. But I still feel so foggy-- I can\'t read anything! How long does that last? is it from the anesthesia? Or the percocet? Am I depressed? Or just tired of the couch? Sorry for the venting, y\'all. Any insight appreciated. xoxo Ashley

I realized in all the journals I\'ve written, I haven\'t actually spelled out what is going to happen to me. I have mitral valve prolapse with severe regurge: my heart is also enlarged and both leaflets are dilated which makes repair substantially more \"complex,\" as all the surgeons I\'ve interviewed have told me. My chords or the strings attached to my leaflets are also apparently long and stringy: too long and too stringy. I\'m having my surgery at USC with Dr. Vaughn Starnes: he will be making an incision below my right breast and spreading my ribs to get to my heart. I am not a candidate for robotic surgery at USC (though I was when I interviewed at Cedars Sinai) and apparently Dr. Starnes no longer uses the Da Vinci robot since he maintains there are still too many \"flaws\" and patients are spending too much time on the heart lung machine. He will be cutting each of my leaflets into thirds, trimming away any excess tissue, and stitching them back together before strengthening the strings by stitching a gortex-like ring into my atrium to minimize the enlargement. All together, I should be on the heart-lung for about 50 minutes, the procedure itself should be 4 hours, with a total of 6 hours in surgery. If I need a replacement valve (tissue!) then apparently he can do the replacement from the same incision without having to open my chest. Phew! xo

It\'s Monday and it\'s my last day at work for the next 7 weeks. What a crazy thought. I feel a bit more mentally prepared then I had been-- but I don\'t feel prepared in terms of what to bring to the hospital, grocery shopping, etc. It\'s as if part of me has just figured I can\'t control the next couple of weeks so I just need to let go altogether. Which has been a release (but a major stress for my husband!) I talked to a girl, another patient of my cardiologist\'s, on Thursday night. She had had the same surgery at my age, 3 years ago, but at Cedars Sinai, robotically with Dr. Trento. She had some good pointers: to be prepared for the pain (on a scale of 1-10, it was a 10), that most of your fellow mitral repair patients might be older than you are, that you\'re going to feel pretty lousy for a while, that the fatigue is incredible.... I was pretty upset after hanging up the phone, mostly because she told me that she didn\'t return to work for 12 weeks after the surgery and I had been planning to return after 4 weeks. My cardiologist even confirmed that my plan was slightly unrealistic and said to set my expectations more around the 6-week mark. She also told me something interesting, in regards to the pain factor. Apparently the surgeon or cardiologist on staff had told her husband post-surgery that the pain was more intense for people my age (ie, 33 years old) because our nerve endings were more intact than people twice my age or more. Whether or not this is true remains to be seen but I\'m strangely not too afraid of the pain because I know it\'s controllable. (But those of you older than I, lucky you!) So that brings me back to the fear element: I know I can\'t control anything, I know that I can\'t be prepared, I know that it will be painful but manageable, I know that I\'m going to be achy and fatigued for weeks on end. Part of my fear subsided when I realized I knew all of these things, but didn\'t disappear completely. And then I decided I need to shift my thinking of looking at my heart: right now it is working so hard, what if I look at this as a chance to help it out? This thinking for the most part, has allowed me to sleep through the night so far. Tomorrow morning my husband and I head to USC for my pre-op appointment. Blood work, xrays, etc. (I have no idea if this will be a hard day-- I\'m just walking in blind.) Then touring some of historic downtown LA before meeting my family (parents, 3 younger brothers) for dinner before crashing at a hotel a few miles from the hospital. Wednesday morning I have to be there at 5:15am, with the surgery scheduled for 7:30am. Fingers crossed. I know it will go well. What do you all say on this site? See you on the other side of the mountain? Please keep me in your thoughts, I\'ll be thinking of all of you...

Hi all I went to see a therapist a few times over these last few weeks just to talk out my fears-- this heart thing is still very shiny and new to me-- and she mentioned something about Mitral Valve Prolapse Syndrome. Apparently it\'s widely acknowledged amongst the medical community? Your heart doesn\'t get enough blood to your central nervous system which results in severe depressive episodes and periods of anxiety, etc? I thought that was fascinating... all those years of feeling like my heart was going to burst out of my chest, like I\'d had 4 shots of espresso, might have been related to this heart thing after all. Any one else had a similar experience or know of this condition at all? xo Ashley btw, thank you all who have written me: I\'ve been responding to your comments but am not sure if you are seeing them!

This is just a post out to the universe... and maybe those of you about to undergo your surgery or are just recovering have experienced something similar and might have some sort of insight. Just to be clear: I have a great support network-- my family is amazing and my husband is a total rock. My best girlfriend lives 10 miles from me and has been outstanding. A few of my girlfriends back in SF reach out weekly if not daily to check in. Another girlfriend has put me in touch with her sister who went through something similar and has been immensely supportive. Yet another friend on the East Coast checks in constantly and goes so far as to take notes to relay to her family about what\'s going on with me! And what\'s been most surprising is when the acquaintances who live across the country that you don\'t talk to very often anymore, find out from other friends about what you\'re going through and try to connect. I will say that has been a silver lining to all of this: reconnecting with old friends and realizing that they genuinely care-- even if it\'s just one phone call or a text message or whatever. But it\'s the most surprising thing when the people you truly thought would be there for you, haven\'t been. Dare I use that old adage, that in times of trouble, you really discover who your friends are? I mean, I get it: life is complicated and stressful and people have a million things going on in their lives. But these people I would count as some of my best friends: they were in my wedding and in some cases, our friendships stretched back over a decade or even more. And nothing. No phone calls to check in-- no email to ask if I had set a surgery date. It\'s just bizarre and I\'m trying not to let it bother me. But it does. A family member told me that sometimes, when things like this happen to people who otherwise seem totally healthy, people/friends shut down and can\'t reach out because they are scared. Major surgeries, illnesses, etc can be reminders of our own mortalities-- so not meaning to offend, they politely excuse themselves from the room. Or the friendship. Is this true? Or have I just picked, and maintained relationships with, some pretty crappy friends? Man, life is so complicated, isn\'t it? xo

So with more thought I think that some of my fear stems from what *exactly* happens when you arrive at the hospital the morning of surgery. If anyone has any input on this, it would be most appreciated-- (especially if you happened to have your surgery done at USC?) I guess I\'m just anxious about... does someone call your name when it\'s \"your turn\" and you leave your family and walk by yourself into a prep area? Are you shown to a gurney, handed a smock and told to undress? Is family or a loved one allowed to come back with you at some point? Does the surgeon come in to say hello? I\'m supposed to be at the hospital at 5:30am-- but my surgery isn\'t slated until 7:30am: what do they do in those long, two hours? When do they start the IV? Will I be zonked out before I get into the operating room? Or will I be fully awake, pushed along a white corridor into a vast room with humming machines and a team in lab coats and head lamps? And on a totally other note: my other source of anxiety is this breathing tube. Is it terrible to wake up with one of those in your throat? Or are you too drowsy and medicated to even care? Any input, please, would be most appreciated. xo

So I booked my surgery last Thursday and really haven\'t thought much about it since. Why? I have absolutely no frigging idea. But... I was getting ready for bed last night and this overwhelming wave of fear and anxiety just washed over me out of no where. What if I\'m walking into this surgery thing thinking \"eh, no big deal\"-- the way that my surgeon seems to be approaching it-- and it ends up being a very big deal? What if I\'m not actually seeing this whole surgery experience for what it really is? I mean, they are stopping my heart. Hello?!? Even now I can\'t grasp it. But when will I? Walking into the hospital the morning of the 20th, rubbing the sleep from my eyes? Or the night before when I\'m supposedly supposed to wash myself down with the pre-surgery soaps? And why am I so bloated all of a sudden? Seriously, people-- why AM I so bloated all of a sudden? Puffy everywhere, for the last couple of weeks. My bras, tshirts, pants are all tight... I feel like that girl in Willy Wonka who chews the gum and turns into a blueberry. The surgeon at UCLA had asked me if I was experiencing any abdominal distention but didn\'t elaborate, and I didn\'t ask. Is it just fluid retention? Is this some of the fun stuff, along with gasping for breath, they don\'t really tell you happens to you when your heart isn\'t working properly? Good times. Anyway, back to the fear. I can\'t figure out what I\'m actually afraid of. The pain? The unknown, aka, being out of control? Lousy hospital food? If I could figure it out-- maybe I could ease into all of this a little more gracefully? And by gracefully, I mean walking into the USC hospital on surgery morning Grace Kelly-like: perfectly coiffed and composed. Not verging on slightly hysterical with anxious I-didn\'t-sleep-a-wink-eyes. Ok-- that\'s my 10-minute post. Now to head home, fix salmon with the husband and watch some trash-television with a girlfriend.

I\'ve scheduled my surgery. April 20th with Dr. Vaughn Starnes at USC. It was a whirlwind of frustration getting into see him, but once I got past the \"firewall\" that was his office staff, I found a very kind man who seemed ridiculously self-confident. So, 3 weeks to mitral valve repair. He said there is an 80% chance that he won\'t have to replace my valve, and he will be doing it without the DaVinci robot but manually through a small incision under my right breast. Update later!

After almost 3 weeks of phone calls, rushing paperwork across LA county during rush hour, faxes, and hunting down hospital echocardiograms, I FINALLY have gotten word that I can get in to see Dr. Vaughn Starnes at USC. \"Maybe.\" 90% chance. His coordinator is on vacation for the next 2 weeks and had promised me, before she left, that I would be on the coveted schedule for the coming week. After not hearing from her, I called his office only to be told that Wednesday, the only day that Dr. Starnes sees prospective patients, was booked solid. I\'m a pretty shy and reserved person but I\'m afraid I kind of lost it. I told them that if they couldn\'t squeeze me in on Wednesday, then I had no choice but to go with another surgeon because frankly, I was tired of getting the run-around. Was that wrong? So, sometime after 5pm on Wednesday is my tentative appointment. Or after 6:30. Maybe 7. I\'ll find out more tomorrow. In the meantime, I\'m thinking I should look into meditation. Or heavy drinking. :)

My second surgeon interview was with Dr. Trento at Cedars Sinai this past week. I took my parents and my husband with me to meet him and when we walked into his office, his desk was scattered with mechanical and tissue valves suspended in dusty plastic orbs like strange little trophies. This was second only to the view of the storm coming in over the Santa Monica mountains behind the surgeon himself. I had to remind myself to focus. Dr. Trento seemed suspicious. My echocardiogram from the month prior showed moderate to severe regurgitation-- he wanted to know what my heart did when it was stressed. Heart surgery is a serious matter, he said in so many words, and I was so young. He was on the phone, then we were rushed out, down to the 5th floor for a stress echo. Before we left, I noticed the crudely-framed prints by Picasso and Chagall on his wall. He likes art! It made him seem less serious, remote and more, well, human. If that makes any sense at all. Two hours later we were back in his office where he was quite a different person altogether. Dare I say, enthusiastic? He tinkers with a clumsy heart model on the corner of his desk and the 4 of us gather around. Both leaflets dialated, heart slightly enlarged, severe regurgitation. She needs surgery. I nod my head, yes. I know. That was Monday. And I haven\'t been able to catch my breath since. A few weeks ago, I went to get my haircut in one of the beach cities near our house and as I was changing in the salon\'s bathroom, noticed a small fish bowl. Inside was a single beta fish, barely moving except to occasionally lift it\'s lips out of the murky water to sip the air. That was/is me. Here and now. Since Christmas I\'ve had a harder and harder time breathing: worse with exertion but there all the same. My mom put it best: you want to claw your chest open, expose your lungs to the sky-- just to get enough oxygen. It\'s been 5 days since that stress test and even digging in my garden this morning left me gasping and exhausted. How much longer do I have to be in this fishbowl? And will surgery bring my breath back?

I have been battling to get an appointment with Dr. Vaughn Starnes at USC for over 2 weeks now: I\'ll hear from his coordinator at 8, 9pm some nights... my appointment being subject to my case being approved. Frustrated. I know there are patients out there that are in much dire situations than I and I have to keep reminding myself that there are some things you have to be grateful for... that I can wait the month for surgery whereas the heart transplant patient that disrupted the interview schedule this past Wednesday could not. I\'ve had two interviews now to-date: with Dr. Laks at UCLA and Dr. Trento at Cedars Sinai. Both excellent surgeons with incredible resumes. Just waiting now for that last interview with USC so I can choose a hospital, book this surgery and start recovering... and start being able to breathe again. (Literally.)