Joe's Journal

Gosh - it's been forever since I've visited my Journal page. After concentrating so heavily on my condition for what seemed like an eternity, some time away was definitely needed to get back to "normal" - whatever that means. My heart surgery will forever be a part of my life and although the check ins may be fewer and farther between, I hope to be a bit more consistent. I'm happy to report that almost 2 years later (1 year, almost 11 months right now), I'm doing great. I've also made the most of my second chance at life. I got married a year ago this month and just welcomed our daughter to the family this March. I joined a high intensity interval training group (though I don't push it too hard), which has helped me get more fit. All in all, as I'm pushing into my 40s later this year, I've accomplished a lot since heart surgery. I hope all of you the best as well and remember, life does go on! You got this!

Happy 3 month anniversary to me!! It's been awhile HVJ site, but I'm glad to come back and see the same positive but honest encouragement on the site that helped me out so much a few months ago. Of course, I've got a question. I went through cardiac rehab (graduate on Friday). They tell me I get up to at least 6 METs but I don't feel like I'm particularly pushing myself (i.e., haven't run, only walked, always told to keep to lower impact to stay in heart rate range, etc.). I have a vball tournament in about a month and I want to make sure I can do more. Wondering if cardiac therapy was similar for any other people around my age (late 30s)? Did it push you hard enough to really figure out what you could handle? Thanks!

I'm about 8 weeks out from BAV repair and aortic root remodeling to remove an aneurysm. In cardiac rehab for a week and a half, but it's fairly low impact (I get scolded that I push too hard on the machines). I don't feel perfect, but I feel pretty good. I haven't really pushed myself to do anything all that strenuous. Before this whole ordeal, I was playing Vball a few nights a week and traveling one weekend a month to play all day tournaments. Anyone have any advice as to when they felt like they could get back to something like a Vball tournament or more strenuous activities than just walking? I'm no super athlete and don't want to relapse, so I've been pretty conservative with activity (and lazy =). Any perspective would help. Thanks!

I haven't been back since Day 18, about 2.5 weeks. Well, it's almost been another 2.5 weeks, making it my 5 week anniversary. woo-hoo. ; ) For those of you out there wondering what 5 weeks out is like, it's a good place. I still haven't done much because I just got the OK to drive, but not the OK for cardio rehab yet. I'm not nearly as tired anymore. If visitors drop by or we meet someone out, I get through it fine, I just sometimes sneak off and take a little break when I get back home. This might just be me being lazy though -- it's hard to tell. I haven't done these 5 mile walks some of you animals talk about -- but I've been able to get around and walk as far as I've wanted, considering there aren't really sidewalks near me. Haven't attempted to go back to my beloved Vball or really try to run anywhere. Coughing still hurts like a . . . , I can't imagine a kill coming right at my sternum would be a smart move at this point. Still not back at work - but I've had a major vocal cord complication from bruising to an associated nerve. That's been keeping me back a bit from getting into the swing of things. Eating, concentration, and all that good stuff are all working well. I pop a pain pill once in a while, but it's mostly just soreness that comes and goes and the sneeze/cough/laughing pain. Transitions in and out of bed aren't my favorite and I can only really sleep on my back or half my side. I can change the channel on the television extraordinarily well. A few questions I have for those of you out there that have been where I am or raced past me: 1. When did people start cardio rehab? They're telling me 6-8 weeks after. Make sense? 2. My valve issue was a congenital and although they follow protocols and tell everyone to eat a heart healthy diet, my surgeon said it's a good idea for anyone, but no more or less for me. As I'd rather not develop another heart problem -- I figure now that I've done my bingefest after surgery to make sure I'm eating, I'll follow this cardiac diet. Anyone have any recs of books or sites that they've come across for info, meal ideas, etc.? 3. If anyone went back to a sport like Vball (which I played a few times a week before this whole ordeal) -- what did that timeline look like? 4. Of course, if anyone out there had a voice issue after surgery, I'm still looking for you. =) That's my story for now. Hit me up here or on my guestbook if I can help any of you out with questions while you go through this. I've had bumps in the road, but a pretty positive experience and am amazed at where I am mentally and physically from where I thought I'd be at this point. Happy Tuesday. Joe

So, I'm 2.5 weeks on the recovery road. I figured I'd share how I feel, what I do, and all that jazz in the event it helps out anyone else wondering about recovery. This is only my story, but there are tons others on here too, so take it for what it's worth: PAIN: I'm most surprised that I don't feel as much pain as I was expecting. The potential for pain scared the living . . . . out of me pre-op. During my hospital stay, I demanded narcotics every three hours taking the advice of so many others to keep on top of the pain, because once it comes, it's hard to get rid of it. Whatever I did while at the hospital worked because the pain was manageable throughout. I'd refuse to answer that 1-10 pain chart because I thought it was ridiculous and only had the potential to work against me. On Day #8 I was discharged and I decided to skip a pain pill and substitute regular strength tylenol. Day #9, I didn't even take the tylenol and went a whole day without any pain meds. Since then, I've taken pain meds about once or twice a day tops - either the narcotics they sent me home with or the tylenol. I feel tightness in my chest and when I try to get up or reach for things I feel soreness, but I don't have and never did feel any shooting pain or anything like I was worried about pre-op. I'd stick by the advice I took -- at the hospital politely decline to play the 1-10 pain game and just get the meds. When you're home and can relax more, figure out where you are and how to best manage it. You'll likely be surprised how manageable it is early on. See Coughing & Sneezing for a specific kind of pain. MOBILITY: I got around better than expected in the hospital and continue to do so at home. I take a 30 min walk about twice a day - although my pace isn't world recording breaking, it's still pretty slow. HR doesn't get above 115 when I'm doing so and they tell me that's fine. I've done neighborhood streets, shopping at the mall, around the house, etc. I have about 14 steps up to my bedroom and I probably do them without issue a few times a day up and a down. I shower and dress myself without any issue. I already had an adjustable bed, so getting in and out is much like it was at the hospital and I've slept in it since I returned home. It takes some effort, but doable. During the day I typically sit in the recliner I bought on advice of many others here. I laid myself flat down on the couch recently and it was a struggle to get back up. Also, if I drop something to the floor, I have to use my feet to pick it back up because I can't comfortably bend all the way down yet. COUGHING/SNEEZING: The absolute worst thing ever. I spend the majority of every day trying not to do either. Apparently, you need to cough to fend off pneumonia. So, I clutch the heart pillow, put my arms so they squeeze in my ribs and try to do these really pathetic coughs so that I'm at least not keeping it all in. Eventually, I get to a normal cough and maybe it'd be less painful if I just started off big, but all 6ft2 230 of me just can't handle it. People say this gets better, but at 2.5 weeks out, it's still a horrendous exercise for me. CONCENTRATION: I was also worried about being able to read, write, watch a movie, etc. I'm tired a lot, so I think that affects my concentration more than anything else. As long as I'm energetic, I don't have issues reading, writing or watching marathons of trash TV on Bravo. I'm sure I'm nowhere near where I was pre-op in terms of concentration and mental stamina, but my nightmares that my mind would change never came to fruition. I can't imagine I won't be just as sharp as I was so long as I get thru the exhaustion recovery period. APPETITE: The hospital food was amazingly good. I sometimes wish it would still pop up on my table. I must be a weirdo, I know. The first week home, things tasted a bit chalky, no matter what they were (i.e., even bottled water tasted like chalk). Second week home and on my regular taste has resumed without issue. I eat everything in sight just like before, though trying to be a bit healthier and a good patient. Definitely not starving though. Appetite is all in tact. I'm about 10 pounds less than I was pre-surgery, however I went down and back up about 6 pounds while home. Nothing too crazy and no swelling or anything like that. MOOD: Unfortunately, I haven't been able to talk very much if at all since my surgery. It's a long story to go into and I'm incredibly disappointed with the hospital and my care team there for not giving me better answers, but we're pushing for them still. My voice is very hoarse if non existent. Driving me crazy and scaring me as I'm a lawyer who gets by on giving advice. While the inability to easily communicate has kept me calm in some respects (I'm typically aggressive and a pain in the . . . ), it's also made recovery a somewhat lonely and frustrating experience - despite all my family and friends checking in. Take the voice struggles out of the equation and I'm sure I'd be less irritable and unhappy. All of my frustration is definitely concentrated in not being able to speak, not bad feelings about the cardio issues/surgical recovery. Recovery is not a bouquet of roses, but it's been doable from an attitude perspective - so far. ADVICE: Be patient. Listen to your care team, but know that they're not omniscient. Challenge them when necessary. Own your own health and recovery. If something doesn't make sense, demand an explanation until it does make sense to you. I can say that many of the people who have helped me and guided my medical care have been great; others have led me to pause and question. You can't expect everyone to be world class and you can't expect everyone to think you're the only patient in the world. I got comfortable really quickly with trusting that mostly everyone had good intentions for my recovery, but that intentions aren't the total story. That's my story and I'm sticking to it. Hopefully, it helps at least one of you out there feel more comfortable or set expectations. Happy to chat with anyone who has questions or just wants to shoot the . . . . over email, of course, bc I still can't speak :( Happy 4th of July!!

I'm basically ok to go home, they just need to do the aspiration test on Monday, which I see has been spellchecked to aphixiation in my other posts - along with incubation and intubation. It's not the drugs, it's my fingers. Took at least 6 walks day 5 and have my appetite. Other than me going into convulsions of pain at the faintest cough and the voice issues, I'm a-okay. Nurses think I'm nuts because I refuse blood draws from other than lab itself, but they've all tried and stick me multiple times so I had to put my foot down on that. Lovely for them to try harder, but let the next one of you be the guinea pig :) I've been prodded enough! Still have taste buds, so eating Hasnt decreased yet I lose weight which is kinda fun! Some really young guys and girls on my wing , but there aren't enough opportunity for interaction to see if they know about the site, et al. Was looking to start paying this forward a bit, so I'll try to figure something out today. Way too early, so back to bed for me. Love the heart family.

I'm basically ok to go home, they just need to do the aspiration test on Monday, which I see has been spellchecked to aphixiation in my other posts - along with incubation and intubation. It's not the drugs, it's my fingers. Took at least 6 walks day 5 and have my appetite. Other than me going into convulsions of pain at the faintest cough and the voice issues, I'm a-okay. Nurses think I'm nuts because I refuse blood draws from other than lab itself, but they've all tried and stick me multiple times so I had to put my foot down on that. Lovely for them to try harder, but let the next one of you be the guinea pig :) I've been prodded enough! Still have taste buds, so eating Hasnt decreased yet I lose weight which is kinda fun! Some really young guys and girls on my wing , but there aren't enough opportunity for interaction to see if they know about the site, et al. Was looking to start paying this forward a bit, so I'll try to figure something out today. Way too early, so back to bed for me. Love the heart family.

It's day 4 and I have but a faint voice. Details of my incubation are not clear to me yet and they're recommending a video down my throat on Monday for aphixiation, even though it'll be 5 days since the problem was noticed. Unsure if I want to go ahead with it until the details are clearer to me. My voice may be improving. Anyon else have voice issues right after surgery that ran for awhile?

It's day 4 and I have but a faint voice. Details of my incubation are not clear to me yet and they're recommending a video down my throat on Monday for aphixiation, even though it'll be 5 days since the problem was noticed. Unsure if I want to go ahead with it until the details are clearer to me. My voice may be improving. Anyon else have voice issues right after surgery that ran for awhile?

Well, no big long step by step update but that will come for those of you interested once I can type on other than my phone. In the fourth day and after a few hiccups, feeling like I'm on the road to recovery. Walking the halls. Doing stairs. Showing everyone my excrement and being told how wonderful it is (hey, they're all demanding to see it!). Oddly enough, at 37, I was the senior member of my cardiac PT\OT class today. Lots of young folk. I have lost my voice but they think it's a few week set back not a permanent thing. So, that sucks. Parents and partner and friends have been great support even though I haven't really had the concentration level or voice to get back to people yet. Waiting was definitely not the hardest part, and I'm still in a gown, but it's amazing how I turned the bend from one day to the next. Taking it slow and will catch up soon. I will say I felt completely more educated and supported than everyone else I've encountered here in the hospital. You all really did lead the way in a mature responsible way and I kept that in my mind when things were challenging. Just listen, you'll get through. Oh and do whatever u can not to cough. Ergh!!!

Update on Joe [from Chris]: Joe surprised us all yesterday by willingly getting in the car yesterday morning, hospital-bound for surgery. He was scared beyond belief and needed two "cocktails" to calm his nerves in the pre-op room (after the remaining consents were signed). He was scheduled for a 10:15am start, he got off to a much later start. He went into A-FIB before they even started (only his second reported episode), which in my mind confirmed the need for surgery. Joe came out of surgery after 2 am and was sent right up to ICU (where he is now still under sedation 12 hours later). We met with Dr. Bavaria Last night, who reported that he is very pleased with the surgery and that we can all breathe a little sigh of relief after the vent is removed. The doctor was able to repair the valve and reimplant it after fixing the aortic aneurism / root. They have Joe sedated/comfortable right now while they work on leveling his numbers. The plan is to take him off the ventilation sometime later today. The UPENN cardiac ICU nurses are rock stars; explaining and updating at every turn. Joe has a long road ahead of him but he is well under way. Thank you all for your support / concern and well wishes. He will be excited to type his own update in a day or two. Chris

I can't say it's wonderful to see my name up in lights on this website as the next to go in for surgery. It's about the last type of recognition award I was looking to receive in life, but I guess it's mine to own. I'm scared senseless and I wish I knew where to run, but I expect that I'll be carried kicking and screaming onto that operating table by my partner, my mom, dad, and grandparents (though I'd really like to see grandma with two bionic knees and hip catch me!). I just hope the surgical team knocks me out before I get too worked up or find an escape route. I can't for the life of me visualize going through with this, though I suppose that's not a prerequisite. Everyone keeps telling me to be positive, but I'm just not that guy. I'm not sulking - ok, maybe I am a bit - but I'm being realistic as this really does suck and will continue to for awhile. That being said, I've got an awesome network of support from cheering squads within my family, friends and colleagues, which has helped me understand how much I want to just get through this and go back to life (somewhat) as I knew it. So, maybe I'm not the most positive, but I'm going to try to be the most persevering and get through it -- grumpy face and all. I've written before about my love/hate relationship with the site. As much as reading all the stories helps immeasurably, it also sends me into a tailspin - even though they're mostly positive and encouraging. The sheer concentration on it makes me nuts. At the end of the day, I do peek at (fine pore over) it more than I admit and it's been an invaluable source of support, inspiration and education. I don't know Adam, but thank you for developing it and thank you for each of your participation. I'm going to go try to relax as my family comes to town and we get ready for Monday morning. I could use all the good wishes you all got and I will see you on the other side of this, probably just as grumpy if not worse about this all -- but, willing to help and support those of you going next. I don't think I could have gotten comfortable with even scheduling a date if not for all of your stories and insights. Thank you from the bottom of my structurally in need of repair heart. =)

Thought I already posted this, but maybe I didn't? In any event. I've got a week until my surgery date. Already broke out in neck to toe rash, I assume, stressing out over the whole ordeal. I'm trying to take my own advice to others and concentrate on what I can control - that's preparation, etc. When I first started reading these journals, I saw a list on someone's site of things they did or bought to prep for surgery/recovery. I wouldn't know where to find it again, so maybe we can do a refresh? Any ideas?

Heading into surgery on June 15th. Still freaked out of my mind, but hopefully someone will sedate me and drag me there to get it done. =) I'm wondering what's a typical day like when you get home the first few weeks. I read a lot about not being able to use arms, being tired, etc. Then again, people are emailing, taking pics in parks and the like - so this cant be sitting in a chair all day crying - can it? What fills up the day if you can't even use your arms? Is it hard to get around the house? Can you cook? Are steps unrealistic? How long are these walks everyone talks about? So many questions. Basically, would love to know from morning to night -- what's a practical example of how much one does while recuperating? I understand we're all different as well, but would love to hear specifics from some of u as I'm a bit confused on what to expect. Thanks!

I have such a love-hate relationship with this site. The content is amazingly helpful and all of you are incredibly supportive and positive despite knowing so little about me. That being said, it still makes me weak, upset and anxious whenever I read the posts and think about this whole ordeal that I try to avoid coming back to check. Here I am trying again, as my pre-op appt is on Tuesday 2/26 and my tentative surgery date is 6/15 - if I can bring myself to show up. I'm babbling and I'm sure I'll make it there, but I do have a few things on my mind: - My surgeon closes the bone with wires, meanwhile I hear that the newer method is with plates. Does anyone have any information on pros/cons of closure procedures? - How long have people stayed out of work? I'm an attorney at a pretty busy Fortune 500 company. While I don't have to lift things often and it's mostly me on the computer and in meetings, it's a lot of working. What should I be reasonably expecting as a return timeline? Thanks again for all your help. It definitely makes this journey seem more doable.

I'm about 25 min outside Philly and considering Penn for my AVR and aneurysm surgery with Dr Bavaraia. Wondering if anyone has any experience with the surgeon or facility. It's close to home and familiar (went to the Law School). Many have pointed me to Dr Svensson at Cleveland Clinic. Sent in full records for initial screening but his staff didn't provide an analysis with much specificity. To their credit, the screening is different than going in to see the doc in person and my expectations may have been set incorrectly about the service as I've heard nothing but praise for that group. Anyhow, also worrisome of traveling a far distance and how that may play into recovery/post op follow up. Another recent option is Dr Stewart at Mt Sinai in NYC, who we've met with too. Some days I think I know what I'm looking for in a surgeon and facility, other days I have no clue. If someone could promise me I'll be fine and repaired well rather than replaced I'd go with them, but that can't happen, so soliciting some perspectives from you all that have been through it. Thanks!

New here. Scared out of my mind. Procrastinating over Surgery date. Late 30s guy diagnosed with Bicuspid Aortic Valve and Ascending Aortic Aneurysm 1/1/15 (Happy New Year!) after a first and only bout of A-fib. No other symptoms, still feel fine. Detected on echo before discharge next day. Valve repair candidate with great odds (85% likely can be repaired), but have to figure out a plan B as well. Curious as to views on mechanical v. tissue, especially at my age. Of course, how much is this gonna, well, suck? No other way to really describe it. That's my other primary question. Help?