Matthew's Guestbook

Matthew Malooly  Hey Max! Sounds like maybe this was a recent diagnosis?  I remember how frightening and disorienting and depressing my diagnosis was, even at 15 when I didn't really understand the implications.  I'm sorry you have to carry this burden - we all understand.

If I recall, I was moderate to severe regurgitation from the beginning.  I never had symptoms that I noticed outside of the strong pulse effects (abdomen, headboard hitting the wall, pulse in lips and thumbs, slow heartrate, high pulse pressure...) and participated at a high level in sports the whole time, though it probably affected me somewhat.  I never had stenosis.  It was missed on all my physicals and was caught on an echo my mom got for us because of a different family cardiac history. I was first followed by a pediatric cardiologist.  I hit adult size early.  I was 6'2" 200 lbs by 8th grade and by the time I was 19 and still with pediatrics, they told me it was time for surgery as my regurgitation was moderate-severe and my heart dimension on echo had grown a lot.  I was under general activity restrictions - I was not allowed to lift over 100 lbs or participate in high contact, strenuous sports like football or wrestling, but I still probably pushed it too hard and progressed the disease somewhat.  I had a second opinion with adult cardiology and they said it wasn't time.  They attributed the changes to my continued development as just a big, barrel chested guy, and I was under watchful waiting for the next 15 years.  That whole time, my dimensions (ventricle wall, ventricle size, aortic rood diameter) creeped little by little every year, but I remained stable and asymptomatic with no stenosis.  during that time I worked a ton and had enormous stress and left a very sedentary life and gained a ton of weight.  I decided that was going to eventually kill me and I turned things around and found my athlete again and started doing strenuous cardiovascular exercise routinely with no weightlifting or straining.  That changed everything for me.  I was able to progress and train with no symptoms, and lost 80+ pounds and found a new life. 

A few years later the conversation I was waiting for eventually happened.  "it's time to start thinking about doing surgery"  It was nothing sudden, nothing emergent... but it was time.  My aortic root had finally creeped to the threshold for intervention, pulling the valve wider and making my regurgitation more severe.  Still no noted symptoms and I continued to exercise up until a few days before surgery.   Maybe I did have symptoms, but I had lived with them so long, and they had come on so slowly, that I couldn't point to anything.  And perhaps my aggressive cardio pushed things there a little earlier than it would have if I had remained sedentary, but obviously that carries it's only serious cardiac risk and I wouldn't have had it any other way. 

My provider is at UW-Health in Madison, WI, who had the capabilities to do a Ross procedure, as well as a David procedure.  However both those programs were in their infancy so I decided to investigate elsewhere as being so young, this has to last a long time.  I had second opinions at Mayo, Cleveland Clinic, and Mount Sinai.  Ultimately I went with Mount Sinai since they offered high confidence for repair, and could divert to Ross during surgery, something the others couldn't offer.  Interestingly, Cleveland Clinic said I couldn't get anything but a mechanical valve.  Ultimately Mount Sinai repaired the valve last January.  I am beyond grateful.

I was told that as long as your valve doesn't have stenosis, there's a chance it can be repaired.  It's a matter of someone who has the experience and confidence required.  There are several types of bicuspid valves. Mine was the most common, and I was told it was textbook repair eligible, so I was lucky.  From what I understand, the activity restrictions recommended in our disease state aren't so much evidence based as they are intuitive (though I could be wrong about that). Nevertheless, I think it matters a whole lot more that you maintain a healthy weight, healthy blood pressure, reduce stress, don't smoke (!!!) - you know, the basics.  What surprised me most about the management of the disease it's that it's lifelong.  I'll likely need surgery again.  I just hope to have lots of years where I can just live life and not think about it.  I think that's sort of the point.  Work with your cardiologist.  I ultimately decided that even if exercise made my disease progress just a little faster, it was worth it.  I needed to do that to live a healthy happy life, and if it made surgery come a year earlier, so be it... I was going to need it eventually anyway. 

I also understand that it's typical for people with no stenosis to be asymptomatic.  I don't know if stenosis eventually happens, but it always seems the story for most people is they start having symptoms when they're 50+ and they find a stenotic valve.  Maybe there's something fortunate about having severe enough regurgitation to find it early.  I think the only thing really shown to prevent stenosis would be to avoid taking to much calcium (tums), but intuitively things like smoking and high cholesterol would be contributors. 

Reading my surgical report, they did find some small areas of calcification (stenosis) on the surface of the valve, but they were able to scrape it off during the repair.  The big thing was there was no stiffening on echo to suggest it.

I'm so glad you caught it early.  I think so many of these get missed because it's so typical for guys our age to just never go to the doctor until there's a problem, and in a disease state like ours - if you're waiting for symptoms, damage has likely already been done. 

 I know how much this sucks, trust me.  But information is always good.  Knowing about it doesn't change anything - it was there anyway.  And knowing gives us an opportunity to have control in a situation that we didn't choose.

Let me know if I can help in any other way.  This has been a lifelong journey for me - for most of us here - and it gives the struggle more meaning when we can use our experiences to help others out.  This community did the same for me since I was a teenager.

Max Jam  Thank you so much for your message and explanation. Yeah, i was just recently diagnosed after my pcp heard a murmur. I guess im the first one in the family with this, no hx of Cardiac issues. :/. 
definitely going thru a trip of acceptance and lifestyle modifications as you did. 🙏 

Matthew Malooly  I think it depends. My understanding is a valve needs to be symmetrical in order for TAVR to work. I think it depends on what type of repair can be done on whatever type of valve you have. The benefit to me was that the Ross procedure could be done after this one.

Matthew Malooly  Hey Sue!

I can certainly understand the worry, and can't imagine if it was one of my kids going through something so nebulous and abstract.  I'll go ahead and assume you've read a lot online about it and understand some of the basics.  I think it's important to note that pericarditis in and of itself, is not a dangerous condition.  It's just awful to deal with.  Some people can get into trouble, but they tend to be the people with really severe and recurrent symptoms, over years.  Because your son and I both have a direct cause (injury to the pericardium), I'd find it stunning if this was anything more than a complexity of recovery - yet another thing to just be patient with.  And my cardiologist agrees.

Starting 5 months after surgery, I had two incidents of fever and debilitation, one after viral illness, and one after trying a little too much exercise.  Mainly for me it was fever and/or aches and chills, pain in chest when breathing deeply, shoulder/neck pain, awful worsening of pain when first laying down, woody sensation in chest.  Both times the feverishness lasted a whole week.  I didn't know it was pericarditis until I had the second flare and the symptoms were so eerily similar.   The first time they were worried about a bacteremia and I was admitted to the hospital with antibiotics overnight.  I still feel like my body overall is in a state of insult, six months after the first episode.  A little too much activity and things get "funky" - I don't know how else to explain it.  Little weird aches... tiredness.  I attribute it to pericarditis as being the last thing that's really still healing for me.  I haven't tested it much to see if I'd still have a big flare like that yet, but I did have Covid for the first time on Christmas, and a massive exertion going to a Packers game last weekend... both with aggressive symptoms from exhaustion and chills and stuff from Covid, but no symptoms of pericarditis whatsoever, so I'm hopeful.

From what I understand, most people have pericarditis early after surgery, and briefly.  I was one of the less common cases where it has stuck around.  I was surprised and concerned because it seemed to start so late in the recovery.  It's reassuring for me too, to hear I'm not the only one.

I'll assume he's already followed up with cardiology and they have him on high dose NSAIDS and probably colchicine?  If not, that would be priority number 1.  It really has made a big difference for me.  I've been on both for 6 months, and still am, with a cardiology follow up in the next few weeks.

If he'd end up being one of the extremely rare cases with lots of severe flares or long duration, rest assured there are other treatments that are really good too.  It's certainly a disappointment and a frustration, but if I had to pick a complication, I maybe would pick this one.  Just tell him to take it easy, and take it as an excuse to be lazy :-).  I'm really disappointed I'm not where I thought I'd be at this point.  I lost years of athletic gains and exercise as a healthy coping mechanism - the mental side has been the hardest part.  It wasn't until that first flare that I finally understood what everyone was always saying about taking recovery one day at a time.

I'm happy to talk more!

J Alexander Lassally  Thanks for sharing. Which shoulder - or both? I was diagnosed with "unspecified pericarditis" on day 2 of my hospital stay (based on ECG readings) and was given colchicine for the 14 days. 

I was just piqued by the shoulder bit because I had a terrible time with my right shoulder and attributed it to just surgical positioning and not the pericarditis.  Now, thankfully it is mostly better. 

Also have avoided flat beds so far... Thanks again 

Matthew Malooly  Heyo.  For me it was my left.  Starting near my neck and moving out to my arm over the week.  From what I understand, all that pain is referred, so where you get it depends on what part of the pericardium is the issue.  I think you can have either arm, both, or neither.  Makes it so much easier to diagnose... just kidding

Patricia Miller  Sue Lee- I am so sorry your son is dealing w/ this now.  He has been through a lot.  Teenagers are so resilient and his recovery will get back on track.
I developed pericarditis a couple months after my robotic mitral valve repair and was treated w/ 3 months of Colchicine.  It's the same med that treats Gout.  I tolerated the med just fine and the pericarditis symptoms resolved after a month or two.  My chest pain was more on the mild side.  No fevers or headaches.  CRP normalized after few wks of Colchicine.
I hope your son is feeling better soon.

Sue Lee  Thanks all for the feedback. Still waiting on blood cultures but looks like pericarditis. They are starting colchicine and keeping him a few days until labs improve. 

Matthew Malooly  Thanks for the update Sue.  You'll be in my prayers.  Let me know if there was anything else I could help with.  Hopefully a few weeks and this is behind him!

Sue Lee  How soon after the colchicine did you feel better? Did they track your labs after discharge? We have elevated Troponin and CRP. Hopefully cultures come back negative. 

Sue Lee  It sounds like you’re on 6 month treatment bc it happened 2x. I hope that solves it permanently for you! 

Matthew Malooly  Yeah I hope so too.  I had elevated CRP, ESR, WBC, and troponin.  All were fairly mild elevations, but persisted.  I didn't stay long enough for them to track when they returned to normal.  Every time I had labs done I was in an acute phase so they were elevated, same pattern every time.  They did blood cultures every  time I came too.  Even the second time - even though we knew what it was, the fever lasted for 4-5 days so we just wanted to be sure.  The first time I wasn't on any treatment but took ibuprofen on my own for the pain, and it lasted 7-8 days.  The second time was worse, but I started colchicine and high dose aspirin three times daily right away and was back to mostly normal in a week.  I was discouraged it wasn't helping until I stopped the NSAID for a day and it got way worse, so it definitely helps.  Typical first course treatment is colchicine and NSAIDS for 3 months.  They kept mine going because I still felt "funky" once in a while and was otherwise tolerating the meds just fine.

Matthew Malooly  One of the things that helped me with the pain, especially when sleeping, was gabapentin.  It's a controlled substance, so they won't give it freely and generously, but it's not and opioid whatsoever, and isn't habit forming in that kind of way.  It wasn't controlled actually at all until the last few years.  It specifically helps with nerve type pain and is often used in things like Shingles and diabetic neuropathic pain.  It just took some of the edge off.  A wedge pillow in bed helped too so I could sleep a little more upright.

Sue Lee  Sorry to hear you had so much pain. Hopefully that’s gone now. Have you managed to resume exercise yet and get back to your fitter self? 

Matthew Malooly  No not yet.  I'm still trying to ramp up, but when I overdo it... which doesn't feel like overdoing it... I end up feeling funky with lots of palpitations.   I have a follow up echo and cardiology in the next few weeks for the year anniversary so hopefully that will give us some answers.

Sue Lee  I’m really sorry to hear this. I saw your anniversary is in a few days and hoped you were only on medication but otherwise back to normal activities. Have you checked inflammatory markers? Or done intermittent imaging to perhaps confirm the pericarditis is gone? 

Matthew Malooly  I appreciate that.  No I haven't had any labs done for several months to look at inflammatory markers.  I was planning on asking cardiology about it.  As far as imaging, you can't see pericarditis on imaging unless there's a pericardial effusion or pericardial thickening.  I have had a tiny pericardial effusion the entire time up until at least my last echo in September.  We'll see what this one shows.  I'd imagine my symptoms may be related there.

Sue Lee  Hi Matthew. Checking in to see if any update from latest Dr visit. My son is feeling better but we are a little nervous weaning the ibuprofen 

Matthew Malooly  Hi Sue. Just had my echo on Saturday.  Everything looks fine.  They still note a trivial pericardial effusion, but not sure if that's an improvement or not from "trace".  It was always a couple millimeters or less.  Since I'm a year out, I'm starting weaning off some BP meds  and I'm going to start exercising very slowly, just with 30 minutes of walking every day and just see what happens.  He's keeping me on colchicine while we wean off BP meds, and I'm going to stay on the high dose aspirin for the time being as well.  I'm getting my CRP checked tomorrow to have a baseline before I start anything also.  I'm cautiously optimistic!  Also glad to hear he's doing better.  How long has he been on ibuprofen?

Sue Lee  Hi. He’s been on colchicine and ibuprofen for nearly a month. Prior to this episode, he’d been on a low dose of Naproxen for 6 months as part of his surgeons post surgery routine. We are wondering if his pericarditis was some sort of rebound as we stopped the Naproxen or if the Naproxen was holding back the pericarditis. Or maybe something different. It’s all so unclear. 

I hope your CRP is reassuring. We are planning to check CRP as we wean the ibuprofen and likely the colchicine too. The colchicine is at least not a scary medicine. If I had to pick one for longer term, it would be that one. 

I hope you feel fine as you resume walking. Glad to hear the echo went well and I hope the valve and all else looked great 

Matthew Malooly  CRP and ESR looked great!  It's funny you mention that with the Naproxen.  I took a higher dose of Ibuprofen scheduled BID for 6 months after surgery too, just of my own accord.  This all started when I stopped taking that.  I literally wondered the same thing about some kind of "rebound" effect.  So for now, I'm keeping going on the colchicine and aspirin, and ramping up my activity to see what I can tolerate before removing any meds.

I see on your profile you went to Mount Sinai too?!

Sue Lee  Yes we were with Dr El-H at Mt Sinai. Glad to hear levels are good. Are you weaning aspirin at all? Still on a high dose? I’m anxious about being on NSAIDs for so long (7+ months now, including the Naproxen). Interesting we both have this ‘rebound’ thing, Any idea what it means? 

Matthew Malooly  So good so far, but I haven't done more than walking 30 minutes straight every day.  I'm really taking it slow.  I'm using heartrate as my guide, so I'm being extra cautious since I'm coming off BP meds at the same time.  

I was with Dr. El-H too!  I can't remember if we already knew we shared that.  Love him.  Love that team.  Particularly Leemor was amazing and so incredibly helpful!

Yeah, I've never actually heard of anything that would make me think a rebound effect coming off NSAIDS would even be possible.  It's more a thought that crossed my mind.  I think maybe for me, the NSAIDS were just controlling my slight symptoms  the whole time, and I didn't actually have a flare or any real tangible problems until I was months into recovery getting viral illnesses and trying to increase my activity.  My first flare happened after a viral illness of some sort, and the second happened a couple days after I tried my first out-of-breath exercise since surgery.  I think it was delayed maybe just because I was spending most of my time sitting in a recliner.  And I noticed the pain that happened with peri was reminiscent of the pain immediately after surgery - which only ketorolac (the injectable NSAID) touched.

Sue Lee  Hi Matthew. Just checking how you’re doing. We are approaching 3 months and weaning of colchicine, I hope. My son is slowly resuming physical activities. Fingers crossed 

Matthew Malooly  That's great to hear!  Hopefully it's a one-and-done sort of incident.  I've been able to get in a few brief workouts spaced out 3-4 days where I pushed my heartrate well into the 150s, up to 170s.   Of course with my hypervigilance I felt some funk 24-36 hours later, but nothing ever came of anything and I feel great.  Honestly the biggest thing that impacts me right now is palpitations.  They just feel way different than before surgery and I get like a punch in the gut adrenaline burst with each, so it sort of just weighs me down.  Otherwise, I'm still on aspirin and colchicine for now, since I'm tolerating both well... and I'm in the process of weaning my last blood pressure med!  After how awful those flares were, I'm not rushing anything.  I'm content taking as long as it takes to get back to full activity.  Thanks for checking in!

Sue Lee  Sounds like we are in such a similar boat. I sense my son is really nervous to wean the meds for fear of a flare up. I can’t say I blame him 

Sue Lee  Checking in to see how you’re doing. At a routine follow up, my son’s CRP was unexpectedly very high for no obvious reason, so we upped the NSAIDs (which he’d recently stopped (again).. He has pretty much been on daily NSAIDs for nearly a year now, and I’m concerned this can’t or shouldn’t be an indefinite thing. But at least he seems to feel ok. Bc of this blip, we will do follow up again in a month’s time 

Matthew Malooly  Hi Sue!  I'm glad he seems to feel ok, but sorry about the CRP.  If nothing else, it's discouraging... but ultimately CRP is a really non-specific indicator of lots of possible things so hopefully it's just an unrelated little thing from who knows what.  I'm doing pretty well. I'm still on the colchicine and Aspirin, now for over a year and I continue to tolerate it pretty well.  I increased my PPI because I was having what felt like a little gastritis the last two weeks.  Almost certain it's from unrelated stress the last few months, but I know the NSAID can contribute, and it's resolved. 
I'm still having the palpitations, and still experience like the adrenaline punch in the gut.  When they're frequent, they're pretty frustrating to endure.  I was on a holter monitor this weekend just to see if there's anything odd there, but I've been on tele before during these and there's nothing but PACs, so I don't expect to see anything.  He wanted me to exercise while it was on, so I did a 45 minute workout where I pushed pretty hard for part and let my heartrate go up to almost 190 bpm in an effort.  It felt great, and several days later, there's been absolutely no untoward effects.  I'm so very encouraged.  That was by far the most I've challenged my heart since the workouts that caused my second flare last summer.   I also can just first recently feel a sternum wire through my skin, so I'm thinking there is surgical inflammation there of some kind that is still, even 16 months out, healing up somewhat.  I'm hoping to continue working out more routinely and if everything goes ok, start to wean off the meds.  I'm no longer on any BP meds in the last few weeks, and there is a potential, just a chance, that I may be able for the first time since I was a child, to be on no meds at all!   Please let me know how he does.  I've learned that even though I feel like things are on the right track now, to expect the unexpected, and not let the discouragement that comes in those moments derail me, or get me too low.  Discouragement and complications are just a normal part of this journey.

Sue Lee  Matthew, as I prepare for upcoming scans and appointment, I’ve reread your reply several times and each time, I am reassured, encouraged, and grateful. I am so impressed and inspired by your ‘glass full’ outlook. I wish I could hug you in person. Stay well. Hug your family and know you are appreciated by me as well 

Matthew Malooly  :-)  Thank you for saying that.  I'm not naturally a glass full person.  I have to work at that hard.  Talk to myself that way alot.  It's one of the things I've grown in through this experience.  Thanks for reaching out about this.  It's been good to have someone to talk to that understands what it's like.  And it feels good if I have anything to offer at all that can help.  Let me know how things go!

Matthew Malooly  Aw thank you so much Deena.  Yes, utterly confused is a good way to put it.  I know recommendations after pericarditis for athletes is activity restriction for 3 months, so I don't plan on attempting anything for at least that long.  By that point I'll have been able to sit down with cardiology.  Did you do cardiac rehab?

Deena Z  Hey Matt, I did go through the max amount of cardio rehab.  And I am athletic so not ignorant about “working out”.  It was important for my physical recovery and emotionally.  The reason why is because i could push myself hard and knew that if I was over doing it, the wires all over me for HR, to check for afib etc were there. (i did have one episode where I almost fainted.) There are large screens were you can see how your heart is performing throughout.  I have one strong recommendation to make sure that you tell your designated physiologist when you want to go harder.  They start everyone slowly for the first several times, so expect that.  Also, they reassigned me to a more knowledgeable physiologist, because i asked a lot of questions and my first physiologist was not able to answer them often.  Make it clear what you want to get out of it.  (You can cut it short, if you are not feeling the value.)

Matthew Malooly  Thanks Ruth!  I'm on the mend.  It seems to have just been a virus.  Blood cultures were clear and echo looked good!  I'm still pretty wiped from the whole ordeal, but thankful I'm in the clear!

Matthew Malooly  Hey Daniel! Yeah I just realized too that it was 4 months. I can't believe it. It feels like about a year since that day. I've been doing exceedingly well. Work has been okay, palpitations have calmed down. But the last week I've been doing work home and the last few days I've been absolutely crippled with pain across my upper back and shoulders. I like the worst pain since I was in the hospital. So I guess that's my cue to take it slow again and just relax. But that's hard cuz there's so much to do, and I'm actually motivated to do all the things that have fallen behind over the last few months. Motivation is precious and it's frustrating that my body can't keep up with me. Well thankfully no meaningful complications. It's great to hear from you!

Matthew Malooly  Yeah it's a long story, as most of ours are.  I was convinced the Ross procedure was my best option given my age, and they have a really good (but young) Ross program at University of Wisconsin.  But then during conversations with Mayo, they said I'd be a good candidate for repair.  But I had to choose, and neither was a guarantee.  I ended up reaching out to Adam Pick, who put me in touch with Dr. El-Hamamsy. Everyone else's case quantity paled in comparison with his, and he gave me an excellent prospect of repair, with the option to do the Ross as the backup, and minimize the chances of waking up with a mechanical valve. He was able to do the repair, and save the Ross procedure for later, bridging me to the point where there is no excess risk from anticoagulation. They were able to offer a new paradigm of care, and more experience than anyone else. They were willing to take me on and they were in network thanks to my wife's insurance, so I could never refuse. I'm so grateful!

Danny Mahoney  Thanks for your reply Matthew.  I almost went with Mt Sinai or Columbia Presbyterian Hospital (Dr Issac George) but settled with Dr Patel at Lenox Hill. Mt Sinai and Lenox Hill Hospital are very close in NYC. Dr Patel utilized the daVinci robotic device for my Mitral valve repair.  Continued success on your recovery.

Matthew Malooly  Thanks Leona! Yeah I'm in the good days/bad days phase. Overall doing ok just can't wait to get back home! I'm certainly used to snow. It'll be hard for NYC to intimidate me In that regard

Leona Resch  Haha that is true! I found if I thought about how I was one week ago compared to the current week / always improved!! The good day bad day thing is so normal and I’d get discouraged until I realized it’s a marathon not a race.. it can get frustrating but you are doing great ! Listen to your body and you’ll be more and more yourself each week!!!

Matthew Malooly  Thanks! That's great advise. My pain is essentially gone and I feel good. I exercised a lot leading up to surgery (I was asymptomatic and told it was ok), and walked well over a mile in the halls yesterday and still had my breath and felt strong. But last night my heart was a bit poundy and my BP was a little high, so it was a good lesson to me about what taking it slow means.

Matthew Malooly  Mornings are a bit tough with nausea but that resolves by 10 and I get my appetite back. Just lost the pacer but no chest tube removal until tomorrow. They may actually discharge me tomorrow which totally blows my mind. My roommate was also a young guy that had surgery the day before me and left today. He's been so encouraging.

Andrew Dial  That’s great man. Things are progressing for you. What really helped me, was just taking it day by day. Glad to hear you’re doing well 

Leona Resch  Matthew hang in there ! I had that nausea from anesthesia but it slowly gets less and less each day. It’s so much better when you don’t have to eat the hospital food either! My husband made me smoothies when o got home and they errr great to get my appetite back. The first two weeks at home I only felt hungry sporadically. Now at 4 weeks , Im getting g hungry a lot and putting on some weight again! Oh no!! Lol

Greg Lewis  Hey Matthew...when you mentioned the pacer, I thought to tell you to make sure they remove the epicardial wires, and not leave them in. They do that a lot now, and it can suck! Make sure they're gone at discharge!! Trust me.

Deena Z  Matthew- yeah, you're taste buds are probably way off. I thought the prune juice given to me was cola. If I had known it was prune juice, I would have never gulped it down the way I did. But then since when do hospitals dole out cola! The ice cream was good.

Kimberly Eisenhut  GO MATTHEW!!! My 17 yr old son's name is Matthew :)
Big hugs and prayers sent to you and your beautiful family

Greg Lewis  Good luck tomorrow, Matthew!  You go in, go to sleep, they do a miracle, you wake up..easy peasy!  I should probably add...you take a poop, climb some stairs, take a walk, go home! ...lol
Good luck!!

Leona Resch  Thinking of you and wishing you the best for a successful surgery tm! I know the anxiety and waiting really suck but just keep reminding yourself that you are in an amazing place with an incredibly talented surgeon and team! Tm at this tiMe you will be on the road to recovery!!

Timothy Andre  You both are for sure in great hands. Mt. Sinai was a great experience for me and I hope it is the same for both of you. Maybe you will get to high five each other when you get to the step down unit. No racing on your walks around the halls Best of luck to you both. We all look forward to your posts when you are in recovery and feel up to it. God bless you both

Susan Lynn  Daniel and Matthew - Sending positive thoughts and prayers your way! We'll be waiting for you!!

Matthew Malooly  Thanks Sarah! I'm glad you're on the right path! I have such great support from my family that I get the luxury of focusing completely on healing up. I'm enormously nervous, but I never imagined I'd be feeling this much confidence about it. Thank you for your encouragement.

Sarah Robben  I am so happy to hear that you have family support! That will definitely help you heal! We are all rooting for you! 

Matthew Malooly  Thanks Terry! I feel so good about where I'm going. We just landed in NY 15 minutes ago. It's hard to believe the time has come. In 48 hours I'll be waking up!

Leona Resch  Matthew you will be great after surgery!! I had an avr on Dec. 20 at NY Presbyterian with Dr. Girardi and am walking close to a mile now everyday! Like you I was born with a bicuspid valve and every screening held my breath! Even though it was severely stenosed like you I had no symptoms although I do have to say I have more energy already! I kept chalking up my inability to stay awake at night past 9 pm pre- operatively to getting older- I’m 63- not that old! Lol Maybe symptoms were so subtle I wasn’t aware. 
You are in one of the best hospitals with a fantastic surgeon- I felt blessed to have several to choose from in this area! You v e got this!!! 👍👍👍

Adam Pick  It may be a cliche... But... Sharing is caring! Thanks so much for helping others through your experiences!

Matthew Malooly  Thanks Shar! Let me know if I can help answer any questions or calm any nerves! This community has been so good to me!

Matthew Malooly  Thanks so much for reaching out Deena! They're actually going to attempt a repair and a Ross as a backup. Of course the anxiety is sky high but we're just breathing through it like always. I have the utmost confidence we're headed to the right place.  How did you feel flying back? How long were you there?

Deena Z  Great, Matthew re: repair. Mt Sinai is the place for difficult repairs. I have extreme calcification on my mitral valve and many surgeons were not able to perform a repair or guarantee one. Dr. Adams at Mt Sinai said confidently he could do a repair. -- and it turned out way more calcified than the images showed.

We drove to NYC from VA. Took about 5 hours each way. Flying is probably better, because you need to stop in the car every hour to walk outside to avoid clots etc. Plus you are on meds that necessitate going to the bathroom fairly often. So, the faster you get home, the better. Other heart warriors that have flow have not had any problems that I ever read. Get a good seat on plane where you have space. You are given a heart pillow at the hospital, which is all I needed, but some heart warriors bring their own for travel. You will definitely need a wheelchair to get through airport, which also means you are first to onboard!

I was in NYC for 7.5 days. I arrived the day before the surgery for final blood work etc. and LOTS of paperwork. -- Takes at least 4 hours.

I was in the hospital for 6.5 days. About one day longer than expected -still had fluid. The day after I was discharged, we drove back to Virginia. No problems at all. I saw my cardiologist in VA soon after (8 days). Mt Sinai also recommends a visiting nurse to come to your home and check your vitals within 48 hours of arrival. I called the visiting nurses agency and did not get a call back until 4 days later and by then I felt ok. My husband checked my blood pressure and heart rate. Be sure you have a good blood pressure cuff at home. My apple watch was excellent for heart rate (pulse) measurements. -- very accurate and alerted me a couple of times when my HR was too high.

In some ways, I regret not staying longer in NYC for a post-op visit with Mt. Sinai, because I was pretty foggy while in the hospital. Post surgery time with the surgeon is very short, because the ICU docs and PAs take over. I would have liked to speak more about my surgery, when I was more alert. We left NYC, rather than stayed, because the hotel room was very small and the bed was high off the floor. It wasn't easy to get and out of. If we were in a one bedroom apt, then it would have been so much better. (plus covid was still an issue). Hope this helps!

Matthew Malooly  It does Deena, thanks so much.  As I'm sure you know, the anticipation presents a challenge.  I hear a lot of people get to the point when they've done everything they can and prepared everything and can just rest a little - and I don't feel like I've had that luxury just because of how life has been.   We have two young girls at home that we'll worry a lot about while we're gone, but we're so enormously blessed to have a wide network of loving and trustworthy support.   All that's left is to pack and go.   Sometimes I feel like a kind of hostage to this.  Nothing I can do about it, nothing left I haven't done. I suppose there is some peace in that.

I am really not looking forward to travel.  I'm 6'4" and healthy at 240. I've never met any kind of transportation that was comfortable.  I'm thinking I may have to try out first class 😀 

Klara Čičić  Dear Matthew, I can highly relate to your situation leaving your kids at home and the chaos... All I can say is - it will all go so fast, you will be on your feet quickly and all this will make you stronger! It is definitely a battle, but I hope in a few months it will all seem like it was a dream (that is how I now feel) and you will get your life back! You can do this! Keep the humor up if you can, that helped a lot for me! :))))

Cathy Byrne  Matthew.  Deena helped me get prepared for my surgery too. I also had mitral and bicuspid repairs. The Hubs and I also drove to NYC from VA. We actually stayed across the river in NJ and navigated the bus and subway. I was released a little earlier than Deena and we started home that day.  I also would be glad to share some of my experience, but Deena covered a lot of it. Good luck, and I hope it goes as scheduled.