Jay's Journal

Jeff Williams  I'm at 7 months and have recently had some that may be similar. Doc believes that it's nerve issues that may or may not go away. It is disconcerting at times though. 

Matthew Malooly  I'd wager it's a nerve/musculoskeletal thing, especially with you skiing.  I got something very similar when I spent a lot of time hunkering over a stationary bike prior to surgery, and after surgery spending too much time in my chair.  I'd think especially if you're not having any other breathing or cardiac issues.  Of course the best way to be sure is to shoot a message of to your cardiologist.  I had asked mine at the time and he wasn't worried about it.  Some rest and adding a stretching routine resolved mine after a few weeks, but it would come back occasionally. 

Jay Burgess  Ok thanks, no issues breathing or anything so that makes me think just muscle/nerve. It does come and go but just kind of freaks me out a bit. I did put a message into the cardiologist. I had an echo last fall and everything was perfect. 

Klara Čičić  Dear Jay, there could be other reasons for your symptoms apart from heart. I thing your GP or cardiologist could do a thorough evaluation to see where the problem comes from (after excluding heart problems, cervical spine problems, carpal canals, thoracic spine....etc) good luck! 

Jay Burgess  I have an appointment with PA on Tuesday. Trying to see my cardiologist is pretty hard. I will update you guys with what she thinkgs. 

Robert Miller  I did have a couple of valve repairs and never had pain. However, lately, about 2 years past surgery, I sometimes do feel this strange tension around the heart. I contributed it to just muscle pains. However, it seems that at least in my case more is going on. Check with your cardiologist. Check your heart beat. I didn't think much of it but my heartbeat was/is way out there. I suspect you are fine, though. Btw, I had to give up skiing for the last 2 years as the surgeries fell right into skiing season. And 2 years ago it was THE season (so much snow).

Matthew Malooly  Hey Jay!  I too have gotten aura or ocular migraines.  I got them about twice a year before surgery, and had it like 3-4 days in  row immediately after surgery and now back to normal rate.  I get a scintillating scotoma, thankfully never with a headache.  If you look it up, the images approximating it are actually really accurate.  I've never really been able to figure out what causes it - I think it's happened largely with sleep deprivation, excessive caffeine, eye strain, stress... or some combination of those things.  After it passes I just feel a little foggy and traumetized.  I've been checked out and seen an ophthalmologist (the physician eye doctor) and he reassured me that they're within the realm of normal, and only need evaluation if they change significantly, but did say the patterns tend to repeat, but change throughout your life.

I'm almost 8 months in and feel totally and completely normal now, except for recurrent pericarditis that totally wipes me out and prevents me from even being able to try exercising for risk of flares and making the inflammation worse.  I still have a tiny pericardial effusion.  Sometimes I find that knowing these things makes my super hyperaware of every little feeling around my heart.  I can almost see things in my mind.  I think sometimes that helps, but most often, it just makes me get in my head...

Grace Mason   Congrats Jay on your 1st year anniversary!
I, too, get aura before migraine and sometimes just aura and no migraine, probably 3-5 times a year. I am surprised I have not had any post surgery because it seems common from what I have read here from other members, but it is early days. I think if you are also experiencing dizziness with headaches though, it would be a good idea to check in with your doc/cardiologist just to see what they think.

Susan Lynn  Jay - Happy Anniversary! I was a very frequent migraine sufferer before surgery and even had one in the hospital the day after my mitral valve repair. But, now that I take metoprolol succinate for my PACs, I get very few migraines throughout the year (with or without the aura). Imitrex (my migraine medication of choice) and metoprolol are both beta blockers, so I'm actually getting some 'off label' benefit from my daily dosage. I guess it has a preventative effect.
You might want to mention your headaches and dizziness to your cardiologist or PCP. All the best!

Klara Čičić  I got visual auras before the surgery every few months, but without the headache afterwards. After the surgery, I got them almost every day for a month or two, and now, a year from surgery, I got them again every month or two. Typical visual aura, zig-zag scintillating scotomas, lasting 10-20mins and now afterwards I get very mild headache

Jay Burgess  That is pretty much what I get. Sounds like it will just be something I have to live with which I can. The week long low headache thing is frustrating I’m going to try and figure that one out. I do get plenty of fluids throughout the day and make sure I sleep enough. I do have a bit of stress lately with work I do IT and we are integrating a company we acquired so that has been pretty stressful. I had them years ago too when I owned my own business IT company so maybe they are more tension headaches. I guess I can’t complain that much I’m alive after surgery. I do exercise quite a bit and each very healthy. I have an Echo scheduled in two weeks make sure everything with the heart is good. 

Rose Madura  Happy Anniversary Jay!  I've had the auras all my life it seems.  My eye doctor says it's from some sort of gel getting more liquidy as you age. I think it's related to the heart but who knows. I get headaches with mine but find if I take Tylenol as soon as the aura starts, the headache is manageable.  

Kristian M.  Hey Jay, I had extra weight because of the fluids, but with walking more and more it cleared up in a few weeks. Heart rate for me was high also the first few weeks even with metoprolol. Just takes time to readjust things, you will do fine. Hope all goes good tomorrow for your appoint.

Ana Brusso  Jay, sorry for your set backs after surgery. Know that all your issues are pretty normal for a lot of us after surgery. Also that all of it can be addressed and fixed by your medical team.  As Kristian says, with walking a little at a time to build up your endurance will help loose the extra weight. You will feel better and get better. Hang in there heart warrior 🙏❤️ Blessings 

Klara Čičić  Dear Jay I am very sorry you are dealing with this fluid. May I just suggest a little thing that may help, include more proteins to your diet. It won't solve the entire problem, but it may be that your body needs more proteins and it may help edema to go away faster... Hang in there, warrior!

Ed Eller  Jay, it's good to hear from you. I was wondering how you're progressing. It does sound like you've met a bump in the road to recovery but your medical team is on top of it. You seem to have a great attitude about it and I'm sure that'll help immensely.

Jay Burgess  They just took about 2 liters off the right this morning. I actually can walk up both flights of stairs in our house now without getting winded. I have been walking multiple times a day but I would imagine it is going to be a whole lot easier now. Also I’m vegan but for now I’m eating protein at each meal until I’m better then will go back to my regular diet. I don’t ever want another open heart surgery. I had a bit of plaque in my artery but only 30%. I reversed it from 50% and 25% in my arteries from just 6 months ago. With diet and drugs (repatha). Also they got me taking some crestor which I didn’t want to take. Got to love genetics but I think I’m finally got it figured out. No more open heart for me….. I hope. TAVR for my valve next time and lets hope I get 15 out of this one. 

Rose Madura  I didn't have much pain post op and Tylenol did the trick. However, in the first week or so, I took prescription pain medication prescribed when I left the hospital. That helped me sleep for probably 4-5 hours. Then I'd get up and go downstairs in the recliner with my travel pillow until morning. Sleep will get better for you Jay. Your body has been through so much trauma so everything is out of whack. Hang in there..

Ed Eller  Jay, your progress and positivity have been an inspiration for me. 9 days post-op you seem to be doing great!

Greg Lewis  Good to hear your doing good. I didnt sleep for a long time. Still not great. But once i could sleep on my side it got way better. I have to use cpap on my back. But, i used some sleep meds when i would get real tired, to reset. Talk to your doc. But i used ativan when i had to sleep in my chair. Knocked me out like for 10 hours. First time i used that, i was like omg i looove this stuff! Nighty night!!  Then i used tramadol. Knocked me out, but didnt do much for the pain, for me. I metabolize Codeine like nobodys business!! All pain gone, and knocks me out! I also had some Zopiclone for a bit. I know. Sounds like a walking drug store, and i was. But you gotta sleep to heal and be mentally ok. For me i had a lot of stuff playing on me mentally. If i didnt sleep for days, that wasnt good. You do what works for a bit. The pain will go away, but for now, you sleep anyway you can. I dont take anything anymore. For that anyway. When we would go away to a hotel, i would knock myself out too. But not anymore. Our friend uses CBD gummies too. But she has half THC too. She sleeps like a baby. Takes it at night, so being a bit high is ok. Do what you need to, and sleep! Good luck! Let us know how it goes. Oh ya..be careful with Tylenol. I was taking it every day, and it damaged my liver a bit. 

Patsy Stewart  Jay, they had me to take an hour long nap during the daytime. I’d usually go right to sleep and get up when the alarm went off. As for the nighttime, it was like clockwork. Every night around 2am my eyes would pop open and then I’d just lay there with my eyes closed. Try not to fight not being able to go back to sleep. Try to lay there and rest as much as you can. If you fight it, there’s no way you can make yourself go back to sleep and you’re for sure not getting any rest. Since you take Tylenol, try taking it right before you go to bed at night. The doctor told me that it would help you fall asleep. Also, cut out any form of caffeine or snacking on sugary things a few hours before bedtime……and put your phone to bed so your brain can shut down so you can go to bed.  Sleepless nights are miserable!! Hope they improve for you. 

Jay Burgess  Thanks for the good advice everyone. I do have Oxy but I would prefer not to use it. I’m going to wait to take Tylenol until I go to bed. If I end up waking up at 1am or something I will just lay there as long as possible. 

Greg Lewis  Oh ya. I also listened to sleep inducing sounds on my phone too. That helped a lot. And i agree with Patsy, the more you try , or think/worry about it, the harder it is to get to sleep. I wonder if it isnt a side effect of the anasthetic?

Jay Burgess  I ended up waking up at 1am but then changed my sleeping position and lade in bed until 4am and felt like I was somewhat sleeping. Got 5hrs and 11min of sleep. I have an Oura ring that tracks everything nicely. And my resting heart rate drop one beat. Hey it is progress. 

Ana Brusso  Jay pace yourself and listen to your body. It’s not a marathon. One day at a time. Glad you are home. God bless you 🙏❤️

Timothy Andre  Welcome home Jay! Ana has great advice, it’s a marathon and important to listen to your body. May your continued recovery be smooth and uneventful 🙏🏽 

Jay Burgess  Thanks for the advice. I will try and just pace myself a bit. Want to get this excess water off my body. I think the key it to get the heart stronger. Of course I will my DR. 

Deena Z  It helps to watch your heart rate as you walk each time.  You were in great shape going-in are and young, so you will recover faster than many of us.  The water weight comes off fairly easily.  

Greg Lewis  Good to hear you are doing good. Get some compression socks for the Edema in the ankles (if you have that). Put your feet above your heart for awhile each day. Stay out of the middle of the grocery store, as much as possible. Thats where salt is! Produce, fruit, fish. Soup..bad. soya sauce ..bad.  just some advice. Good luck!! Keep going!!

Greg Lewis  Also, if you find walking a bit hard, you can get a walker for awhile. I rented one. PLUS..the basket is just a great place to put your phone, and stuff! Haha 😁

Leslie Houseal  Sounds about right, Jay!  One day at a time, and feel free to binge LOTR - if you can't do it now, when can you?!  It's great that tylenol is doing the trick for you.  The hot/cold flashes will subside after a while - totally normal.  How's your appetite?  Don't be surprised if things don't taste good for a while, but keep eating anyway to get your strength back.

Susan Eckermann  Fantastic progress, Jay! It must feel great to be home with your family. Best wishes for continued healing.

Klara Čičić  Jay I am so sorry you are going throught this. I hope it will be like you said. Tell me please were the secondary tubes/tube also so thick and painful as those first ones? 

Rose Madura  I agree that sometimes they take the tubes out too soon. I had fluid buildup around my heart and then weeks later around my lungs. No fun! Hang in there!

Rita Savelis  Pleural effusions are very common after OHS. I had 4 of them, with 4 drainings. I always felt great after the liquid was drained (and yes there is a LOT) because suddenly ones lungs regain their capacity and one has energy and 100% oxygen again. There are many unexpected aftereffects that can occur after any surgery and especially OHS so I have empathy. I also think it's good that you can stay in the hospital longer and have these things taken care of and be reassured. Every recovery is singular. Take care and allow your body to rest and heal.

Susan Eckermann  Jay, I hope you are home or on your way home soon.  Best regards for continued progress. You are doing great!

Susan Lynn  Jay - Sometimes recovery isn't as linear as we had anticipated, but fluid is very common. Hopefully, they have your issue resolved and you're headed home! Wishing you success with your recovery!

Patsy Stewart  Thinking of you, Jay, and sending prayers your way that you soon get rid of the fluid and begin to feel better. Keep your head up. You can do this hard thing that is before you! 

Timothy Andre  Great news Jay! You are definitely in the running for quickest post after surgery Glad to hear all went well. We look forward to your updates. For now, focus on yourself and getting rest

Pamela Gregory  So glad to hear everything went so well! Take good care of yourself and thank you for posting the great news. Makes me feel optimistic 💗😀 

Rose Madura  Glad all is well. Now you can focus on your recovery. Listen to your body and take it one day at a time.