John Lyons - Heart Valve Journal

My Journal

John Lyonsposted an update

3407 days ago

Janice Powell and 1 other reacted to this

2nd sneeze last night since OHS. First bout of the hiccups tonight. Must be healing because I am not screaming!

Naomi Ivker Nice! Had a sneeze today. Ow.

Janice Powell I'm still tense with sneezing or coughing and I'm 6 weeks post op I have to hold my chest so be caref ... Read more

Janice Powell I'm still tense with sneezing or coughing and I'm 6 weeks post op I have to hold my chest so be careful..

Tammy Pilcher I remember those first sneezes. Ouch! Glad you're healing, John! God bless!

Gerald Schaffer I don't want to think about it.

Mary K Oh yeah, the coughs, the laughs and the sneezes all get your attention, don't they? Happy that things ... Read more

Mary K Oh yeah, the coughs, the laughs and the sneezes all get your attention, don't they? Happy that things are less painful.

John Lyonsposted a journal

3410 days ago

2 weeks post op pacer install, 20 days post op OHS. Saw the docs last week, got permission to do light driving (I live in the boonies), healing looks great, ...Read more

2 weeks post op pacer install, 20 days post op OHS. Saw the docs last week, got permission to do light driving (I live in the boonies), healing looks great, fix looks great. Played with my pacemaker, with it off my heart drops to 42 BPM and falls out of sink with its self. Looks slightly better than it did the day they installed it (30 BPM no sink) and much better than the day after OHS (ventrical stand still, aka, it stopped). I still doubt I'll ever not be on a pacemaker, but the doc remains optimistic. Another two weeks and we will play again. Until then, chilling out. Reading, watching and making cookies.

Jean Raber John, you have such a great attitude. Enjoy the cookies!

Gerald Schaffer That's good news, hope your recovery goes on with no complications.

Tammy Pilcher Prayers for continued recovery, John. I agree with Jean that you have a great attitude! That will s ... Read more

Tammy Pilcher Prayers for continued recovery, John. I agree with Jean that you have a great attitude! That will serve you well in every aspect of your life! God bless you!

Rita Savelis You can turn your pacemaker off? That's cool. I can't do anything with mine.

John Lyonsposted an update

3420 days ago

Haven't been over here in a while. I had OHS for MVR on July 29th. Surgery went pretty well apart from a 3rd degree heart block. We waited with an external ...Read more

Haven't been over here in a while. I had OHS for MVR on July 29th. Surgery went pretty well apart from a 3rd degree heart block. We waited with an external pacemaker for 5 days in ICU for the heart block to discontinue, but it was persistent. 6 days after OHS, I had a pacer installed under my Pecks (too skinny to go on top). One more day at the hospital and I finally came home. I am still quite sore. The lack of taste going on has been disappointing for most meals and I am really not enjoying the tempruture swings. Everyday is a bit better than the last.

Tammy Pilcher John, it's so good to hear from you! I'm sorry you had a complication, but I'm glad you have your su ... Read more

Tammy Pilcher John, it's so good to hear from you! I'm sorry you had a complication, but I'm glad you have your surgery behind you now. I pray your recovery will be smooth and uneventful. God bless you!

Jeanette Davidson So sorry to hear about your issues. Now you are reading to begin your recovery! Ito have taste and te ... Read more

Jeanette Davidson So sorry to hear about your issues. Now you are reading to begin your recovery! Ito have taste and temperature issues. Hang in there . It will get better💕

Linda Whitney Everyday will be better and before you know it, you'll be back in the driver's seat! Hang in there! ... Read more

Linda Whitney Everyday will be better and before you know it, you'll be back in the driver's seat! Hang in there! Thank God it's behind you!

Bill Cherry Hang in there John, the worst is behind you.

John Lyons Thanks all. 12 days until the drivers seat in fact. Breakfast tatted way better today than yesterda ... Read more

John Lyons Thanks all. 12 days until the drivers seat in fact. Breakfast tatted way better today than yesterday. Everything has a hint of nickles.

Jean Raber John, are you sure you aren't pregnant? I remember everything tasting like nickels--perfect compariso ... Read more

Jean Raber John, are you sure you aren't pregnant? I remember everything tasting like nickels--perfect comparison--before my kid was born. Pretty common for folks to have PMs after surgery; be glad you had it installed before you went home and went into a crisis. Hope things continue to taste good.

Adam Pick Take it nice and easy John. You've been through a lot. Funny you mention the lack of taste. I've hear ... Read more

Adam Pick Take it nice and easy John. You've been through a lot. Funny you mention the lack of taste. I've heard that a bunch. I also hear that some patients can get a metallic taste in their mouth. Are you experiencing that at all? https://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/23/metal-taste-after-heart-surgery/

“Metallic Taste After Heart Valve Surgery?” Asks Robin

https://www.heart-valve-surgery.com/heart-surgery-blog/2009/10/23/metal-taste-after-heart-surgery/

I just received a set of emails from Robin about a metallic taste in her mouth after heart valve surgery. So you know, Robin is not the only patient to send me

John Lyons Its a dull metal taste that stays with everything. Even right after brushing my teeth its still ther ... Read more

John Lyons Its a dull metal taste that stays with everything. Even right after brushing my teeth its still there. Acidic foods help cut it. I never loved lemonaid so much.

Meredith Bray Taste issues and temperature changes are normal. Not sure why the taste change, but the temp ha some ... Read more

Meredith Bray Taste issues and temperature changes are normal. Not sure why the taste change, but the temp ha something to do with your heart learning to pump blood the right way. You're not the only one!
-Meredith

Janice Powell Yes this happen to me and I'm still dealing with it and I'm post op 4 weeks now,but it has getting be ... Read more

Janice Powell Yes this happen to me and I'm still dealing with it and I'm post op 4 weeks now,but it has getting better and I'm sure this will pass too just like how my feet was so tingy,stinging and cold they are almost back to normal.. I laugh when you said lemonade now you love so much.. I was the same way get better and continue to heal bless you..

Rita Savelis I haven't wanted anything sweet since surgery 5 months ago....
Is your pacemaker not visible then? I' ... Read more

Rita Savelis I haven't wanted anything sweet since surgery 5 months ago....
Is your pacemaker not visible then? I'm skinny too and mine shows a lot.

John Lyonsposted an update

3433 days ago

Jean Raber reacted to this

Eating bacon and eggs while feeling a bit of irony that I head in for heart surgery in three days. Just remembering its a valve issue though and pipes are ...Read more

Eating bacon and eggs while feeling a bit of irony that I head in for heart surgery in three days. Just remembering its a valve issue though and pipes are wide open.

Tammy Pilcher Enjoy, John! Sounds good!:-)

Jean Raber Far out!.I can't do without my egg-wegg for breakfast (cut a hole in your bread, put it in a pan with ... Read more

Jean Raber Far out!.I can't do without my egg-wegg for breakfast (cut a hole in your bread, put it in a pan with a little butter, crack the egg into the hole, cook, and flip).

John Lyons We call that one an 'egg in the well'. I love that one too.

Bob M Great, pipes are wide open!

John Lyonsposted a journal

3435 days ago

Sonny Abbasi, Mary K reacted to this

Had a nice Cardiac CT complete this morning. Got the all clear and everything looks good to cut her open. Really was a nice experience and hope it is telling ...Read more

Had a nice Cardiac CT complete this morning. Got the all clear and everything looks good to cut her open. Really was a nice experience and hope it is telling of my upcoming stay.

Tammy Pilcher Good news, John! Prayers and best wishes for surgery! God bless you!

Cheryl Batzing John, you'll do great! Will keep you in my prayers for a successful surgery and quick healing.

John Lyonsposted an update

3436 days ago

1 person reacted to this

Date set. July 29th. Insurance was not nice with the pre-op CT angiogram. Rather than go with plan B for the cardiac cath I opted to pay out of pocket for ...Read more

Date set. July 29th. Insurance was not nice with the pre-op CT angiogram. Rather than go with plan B for the cardiac cath I opted to pay out of pocket for the CT scan. 1 week from tonight I should be in Cardiac ICU. Crazy.

Jean Raber John, isn't wrangling with insurance companies when you're sick a whole bunch of fun? Besides figurin ... Read more

Jean Raber John, isn't wrangling with insurance companies when you're sick a whole bunch of fun? Besides figuring out the co-pays and out-of-pockets, Mr. Insurance Man may not be able to negotiate a lower price with the various specialists, so you get stuck with the difference. Fortunately, I've found the hospitals and clinics willing to work out payment plans for the difference. Hope this is true for you, too.

Linda Whitney We are counting down with you John, and looking forward to hearing about positive results. I know it ... Read more

Linda Whitney We are counting down with you John, and looking forward to hearing about positive results. I know it feels "real" the closer you get to July 29th, but it's amazing how "unreal" it becomes when you come out the other side and you look back.......Good luck to you! Part of your cheering section!

Tammy Pilcher Prayers for your surgery to go perfectly, John! God bless you!

Cheryl Batzing John, also praying for your July 29th surgery and recovery! I had a mitral valve repair in December a ... Read more

Cheryl Batzing John, also praying for your July 29th surgery and recovery! I had a mitral valve repair in December and now doing great. Where did you decide to have your surgery done? I 'll read back through earlier posts to see if I just wasn't paying attention. Blessings!

John Lyons Going with Bellin in Green Bay WI. Close to home with a good hospital.

John Lyonsposted an update

3471 days ago

John Noriega reacted to this

First appointment set with the cardiac surgeon. This is getting real.

Mary Myers Good luck John. We are here for you.

John Lyonsposted an update

3529 days ago

1 person reacted to this

Made my first calls to surgeons today. Just making it more 'real'. Is cardio exercise a bad idea at this point? I was messing around with doing more biking/running ...Read more

Made my first calls to surgeons today. Just making it more 'real'. Is cardio exercise a bad idea at this point? I was messing around with doing more biking/running this spring even as surgery looms.

Tammy Pilcher John, my cardiologist told me before my surgery not to do anything that made me short of breath and n ... Read more

Tammy Pilcher John, my cardiologist told me before my surgery not to do anything that made me short of breath and no heavy lifting. But I was at a critical stage of aortic stenosis with an AVA of 0.39cm2. I think you should ask your cardiologist for sure. Prayers and best wishes!

Duane Beeman They told me to shut it down. I didn't argue.

Barry Van Gemert John, I have mitral valve regurgitation like you, and my cardiologist encouraged me to continue to ex ... Read more

Barry Van Gemert John, I have mitral valve regurgitation like you, and my cardiologist encouraged me to continue to exercise. I can understand if someone has a stenosis or aneurysm you would want to avoid anything strenuous.

Dan D. I'm asymptomatic and was not told to diminish exercise before surgery.

Barry Van Gemert Dan, you have a stenosis, just like Duane and Tammy. That is not what John has.

Duane Beeman Actually, I'm just an Olympic class loafer. I was so excited when the doctor told me that I should no ... Read more

Duane Beeman Actually, I'm just an Olympic class loafer. I was so excited when the doctor told me that I should not engage in any heavy exercise or work, that I nearly wept. I have been following his instructions to the letter.

Mike Nunes John I worked out lightly up until the day of surgery, my surgeon said it was fine as long as I felt ... Read more

Mike Nunes John I worked out lightly up until the day of surgery, my surgeon said it was fine as long as I felt fine, but in moderation.

Jennifer Miller I aldo had severe mitral valve regurgitation & I asked my cardiologist about exercise before surgery. ... Read more

Jennifer Miller I aldo had severe mitral valve regurgitation & I asked my cardiologist about exercise before surgery. He said the better shape I was in prior to surgery, the better my recovery would be. My surgeon said the same thing: walk, walk, walk until surgery day.

John Noriega John...don't do anything that can affect your already bad valve! There's plenty of time after to exer ... Read more

John Noriega John...don't do anything that can affect your already bad valve! There's plenty of time after to exercise and get back into shape. I am speaking from my experience! Onward & Upward!

Jean Raber I was told that exercise was good and to walk more, though surgery may be months away for me. I have ... Read more

Jean Raber I was told that exercise was good and to walk more, though surgery may be months away for me. I have MVP, different from aortic stenosis, which my mother had. She was on bed rest until they could get her OR scheduled. I envy Duane. Hee.

John Noriega Don't do anything that may aggravate your condition! I had aortic stenosis and was told cool it with ... Read more

John Noriega Don't do anything that may aggravate your condition! I had aortic stenosis and was told cool it with the exercising and no travel to high altitudes. Kept me from poker playing in Lake Tahoe/Reno & Vegas. Saved me some $$$!
Onward & Upward!

John Lyonsposted a journal

3532 days ago

Solved part one of the insurance puzzle. I need new insurance. The plan I have here in Maine is non-transferable. So I need to shop via 'the marketplace' ...Read more

Solved part one of the insurance puzzle. I need new insurance. The plan I have here in Maine is non-transferable. So I need to shop via 'the marketplace' for new insurance. I'll spend a fair bit of time searching for hospitals and surgeons before I pick out a plan. This is one more stress than I needed.

Daniel Spurgeon At least you don't have to worry about the pre-existing condition debacle anymore. I wish you luck. ... Read more

Daniel Spurgeon At least you don't have to worry about the pre-existing condition debacle anymore. I wish you luck.

Gerald Schaffer I feel for you. Dealing with insurance is much more difficult than it should be. Good luck.

John Lyonsposted a journal

3533 days ago

HI there. I joined here to find myself a surgeon that could do some work on my Mitral valve somewhere near Wisconsin. I am 29 year old Farm hand/audio ...Read more

HI there. I joined here to find myself a surgeon that could do some work on my Mitral valve somewhere near Wisconsin. I am 29 year old Farm hand/audio guy. I work a lot and its gotten to the point that this ticker stopped keeping up with me. I've only know that I have had MVR for the past two year and have just found out that I should fix this thing sooner rather than later. It also happens to land at the same time that I am moving from Maine to Wisconsin. So that makes thing a bit more difficult. Anyone out that care to recommend a surgeon that can do bi-leaflet repair on the mitral valve?

Terry Shermeister Hi John: I live in Madison Wisconsin. My Surgeon is Dr. De Oliverio. I met with him and was extrem ... Read more

Terry Shermeister Hi John: I live in Madison Wisconsin. My Surgeon is Dr. De Oliverio. I met with him and was extremely impressed. He is Located at University Wisconsin Hospitals and Clinics, Cardiothoracic Surgery. When I went in to meet him, the Cardiac Nurse said, "Well, you really chose an outstanding surgeon." My surgery is scheduled for May 14th. Mitral Valve Repair. Let me know if there is anything I can help you with, Terry.

Barry Van Gemert Hopefully you have good health insurance, and you need to find a hospital that is in-network with it. ... Read more

Barry Van Gemert Hopefully you have good health insurance, and you need to find a hospital that is in-network with it.

John Fichera Hey John. If you close to Chicago my surgeon is great. He fixed my mitral valve using the DaVinci R ... Read more

John Fichera Hey John. If you close to Chicago my surgeon is great. He fixed my mitral valve using the DaVinci Robot. He is originally worked in Milwaukee but moved last year to University of Chicago. I was up and going within 3 weeks.

John Lyons Thanks for the responses so far everyone! Feeling better about this already.

Insurance is the next ... Read more

John Lyons Thanks for the responses so far everyone! Feeling better about this already.

Insurance is the next level of challenge. I am self employed and therefor by via Healthcare.gov. Anthem has been great to me here in Maine, but transferring to a new state is uncharted territory for me.

Terry Shermeister John it's my understanding that Anthem is in Wisconsin as well. Good luck and let us know how you pr ... Read more

Terry Shermeister John it's my understanding that Anthem is in Wisconsin as well. Good luck and let us know how you progress.

Nancy D Best of luck in your search and discovery! This IS the site for information both from the folks here ... Read more

Nancy D Best of luck in your search and discovery! This IS the site for information both from the folks here and the learning things Adam has put in place- look under Surgeon finder, and hospitals, and the learning center as well, so you have some questions for the doctors you find to care for you. I had a mitral replacement, but I am in Texas which is too far for you to commute to- glad others have recommended you a couple to look into!! Take good care!!

John Fichera You lucky you're guaranteed health covereage now. 5 or 6 years ago you would have been out on your ow ... Read more

John Fichera You lucky you're guaranteed health covereage now. 5 or 6 years ago you would have been out on your own.